This site is to give HOPE to those who are suffering from Fluoroquinolone Toxicity Syndrome as a result of being poisoned by fluoroquinolone antibiotics – Cipro, Levaquin, Avelox, Floxin, etc. It contains stories of healing.
Cipro, Levaquin, Avelox and all other fluoroquinolones are dangerous drugs that can have devastating effects that cumulatively I’ll refer to as Fluoroquinolone Toxicity Syndrome or Floxing. Fluoroquinolone Toxicity Syndrome/Floxing includes damage to connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more. The damage done by fluoroquinolone antibiotics can destroy a person’s quality of life or even kill them. Certainly, there is a time and a place for drugs with dangerous side effects. If you find yourself in a septic shock induced coma, fluoroquinolones may save your life. Unfortunately, these drugs are not being reserved for life or death situations. People are being prescribed them for urinary tract infections, suspected prostate infections, upper respiratory infections, as a prophylactic for travelers’ diarrhea, ear infections, pink eye, etc. Thousands of people have suffered needlessly from the devastating effects of fluoroquinolone antibiotics, when another, safer antibiotic could have, and should have, been used.
The damage done by fluoroquinolones is largely unacknowledged by the medical establishment and an accurate diagnosis, compensation and relief are difficult to come by. There is no known cure for Fluoroquinolone Toxicity Syndrome/Floxing. However, many people continue to LIVE after being poisoned by fluroquinolones. They find healing, recovery, perseverance, compassion and hope. These are their stories.
This site is meant to give hope for healing to those who are adversely effected by fluoroquinolones. It is no way meant to disregard the pain of those who are chronically suffering from the horrifying effects of Cipro, Levaquin, Avelox or the other fluoroquinolones. There are people who don’t recover. Their stories are real and they matter. There are also people who are able to recover and I share their stories with the hope that they inspire others, or at least give hope that recovery is possible.
Here is a New York Times article about the dangers of fluoroquinolone antibiotics – http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_r=0 – more news stories, research papers and other resources can be found on the “Links and Resources” page.
Here is a Facebook group that is a great resource for those going through Fluoroquinolone Toxicity – https://www.facebook.com/groups/floxies/
Featured post – I’m floxed. Now what?
The Fluoroquinolone Toxicity Solution Ebook has helped many Floxies to recover, including Daniel, Cindy and Ruth. As a bonus, you will also receive The Floxie Food Guide – a book of diet guidelines to help you through fluoroquinolone toxicity:
I do no do social media, I have been floxed over and over since 1990 and it continues because every time I undergo general anesthesia, the anesthetic synthesizes to Fluoride which is the culprit in the Fluoroquinolones. I need research papers that prove the damage done by Fluorides. I believe the only way I can convince my new pain doctor that the damage is real and the pain it causes is real. I would appreciate any leads you may have.
Yes many end up “refloxed” due to Fluoride in one form or another, from Dentist especially
Unfortunately you won’t find much proof about that, you just need to choose alternatives
Jason, our knowledgeable friend, may I ask for advice about going to the dentist? I have an appointment mid-July and need two crowns redone. I was not aware of any interactions with the FQs the last time I was there, which was after Floxing but before I knew it. I haven’t had a bad reaction to their lidocaine or novacaine that I know of. I have already informed the office that I cannot have any Fluoride, and I plan to take in information about floxing. Is there anything else you would recommend?
fluoride alert.com.
Lee you might start with the Dear Doctor letter from Dr Todd Plumb in the resource section (as well as studies, articles, etc) and also the latest FDA warning re dangerous side effects. http://www.fda.gov/Drugs/DrugSafety/InformationbyDrugClass/ucm500325.htm
There is also a wonderful book by the late Dr Jay Cohen called “How we Can halt the Cipro and Levaquin Catastrophe: The Worst Medication Disaster in U.S. History.” The title pretty much says it all. I am past trying to convince doctors, after a dozen or so naysayers. I only see naturopaths and integrative drs at this point. Good luck.
http://www.microtherapypro.com/
Sent by my physio. The pain master electronic device for pain control. I do not know anything about it at all
I may buy one as anything is worth trying.
Fluoride is not the cause for floxing, its the 2 metabolites released from the active ingredient that are not neutralized properly by Liver enzymes that run amoc in your body becoming toxic from what the study showed that were done a few years back. It’s one result we have had anyways. Sticks to DNA at different angle mutating it differently slightly from one person to the next which causes some range of different symptoms from one person to the other. At least that was my understanding of the study.
I was severely floxed recovered about 80%, I use fluoridated toothpaste and do not have any negative effects that are observable from it.
Hi Locke
How long did it take you to get to 80% recovered from your severe floxing? I’ve been bedbound for 3 years now, with no improvement yet.
http://www.thejournal.co.uk/news/health/acclaimed-county-durham-doctor-banned-7387569
Fluoride is HUGE in the damage from fluoroquinolones. This is from Dr Jay Cohen, who spent decades researches the FLQS and wrote the book “How We Can Halt the Cipro and Levaquin Catastrophe: The Worst Medication Disaster in U.S, History. : the fluoroquinolones have a grim enough history to warrant a skull-and-crossbones label. The primary reason for this as that they have fluoride as a central part of the drug… Most likely a great deal of the toxicity of these drugs is that they contain the highly toxic poison, fluoride… Drugs with an attached fluoride can penetrate into very sensitive tissues that used to be impenetrable. The fluoroquinolones have the unique ability to penetrate your central nervous system, including your brain.
FLUORIDE in tap water cause THYROID PROBLEMS!
Hello Locke I was very interested to read your posting. Please can u advise as to what to do about this. I am unable to tolerate these signs and symptoms much longer.
My liver enzymes are elevated due to phenytoin which the neurologist says is not detrimental. However……..
x
You mentioned you were severely floxed, so I was curious- did you (or anyone else) ever have hair loss after taking Levaquin or other floxie meds??? Thanks in advance for any responses
Hi Jane, yes I had major hair loss. I am into my 20th month post flox after taking Cipro for the second time in 5 yrs. I only took 4 pills this time because I had such a horrible reaction to them. I am dealing with about 30 different issues thanks to these awful meds.
I have been floxed many times twice severely, my hair I lost aroun half the thickness on my head, it also fell out of my legs & elsewhere . it returned to full thickness on my head each time, but it took rather a long while. It was back to full thickness on my head by around 3 years out. Interestingly though, hair growth is now much sparser finer & grows much more slowly on my legs & underarms, though I’m certainly not complaining about that being female lol .
Fluoride per se is a cumulative general protoplasmic poison , it causes its most serious damage insidiously ‘ under the radar ‘, you will not generally notice its cumulative effects the damage caused to the body & brain to any great degree for quite some while , Most chronic fluoride poisoning symptoms are put down to various other things until you are damaged enough for this to be realised, that if it ever is.
It will generally be blamed on other conditions, those such as arthritis, the cognitive issues etc to ‘ getting older ‘ & so on. The fluoride in toothpaste is in fact absorbed through the mucus membranes in the mouth as you brush your teeth, & it is always interesting to observe that the warning on a toothpaste tube which states to contact poison control if your child swallows more than a pea sized amount of toothpaste relates to the SAME amount of fluoride which can be found in just ONE 8oz glass of fluoridated tap water .
it actually absolutely horrifies me when I see some of the advice given re toothpaste i.e. for people with sensitive teeth to leave the toothpaste coating the teeth & to not rinse / spit it out. (( shudder )).
I do not use fluoridated toothpaste myself, have not used it for years nor do members of my family . I would not touch it with a bargepole knowing what i do about the stuff, & luckily I also do not live in an area which has water contaminated with the hazardous toxic waste which passes for ‘ fluoride ‘, which is even more dangerous.
You would not see me for dust if they tried adding THAT to the drinking water in my part of the world.
Their are imo multiple causes for the damage we suffer including the enhancing of severity / potential scope of damage caused by the addition of fluorine, ( it enhances the bioavailability of the active ingredient/s of drugs which contain it, thus allowing it / them far easier access to places they have not been, & are just not meant to go including of course far easier crossing of the blood-brain barrier, & this is imho a major reason why we see so much neurotoxicity in the various fluorinated drugs ) .
The fluorine & its resultant metabolites is a problem in itself . The major suspicion however in relation to the damage we suffer is the QuinoLINE ring the nucleus of the drug itself, which is inherently defective, & has actually been causing serious issues with the various drugs which contain it for many many years .
Our various symptoms can in fact be seen in various patterns in various drugs way back in time, way back past the original Quinolones which of course did not have fluorine added yet also severely damaged many people, & actually this horror story goes way back further in time than that, in fact our symptoms can be seen in these various drugs causing serious problems & injury to people WAY back, all the way back to synthetic Quinine, all these drugs have the QuinoLINE nucleus in common.
There is indeed something VERY wrong with that QuinoLINE nucleus , to then add fluorine is just asking for trouble … with a capital T .
And it is not just the drugs we have to be concerned about when it comes to QuinoLINE.
http://www.sciencedirect.com/science/article/pii/S1383571814002939
http://fluoridealert.org/fan-tv/arthritis/
QUININE , note serious ‘ side effects’, more than a few being familiar to us .
https://www.drugs.com/pro/quinine-sulfate-capsules.html
Hi all,
I had floxied befor 7 month tell now i have fast heart any one can help me please i go to hospital many time the said no problem in your body just take xanax till now i have fast heart i take mag and vitamin C , D calcium d3 , A
Just i take one pill (Avelox) 500 before 7 month
Any help
Hi Faisal…first, I know it’s hard not to worry, but the fast heart rate is VERY common with this. IT is pass in time. Sadly, doctors and hospitals are very misinformed and have NO idea of the many many side effects. The xanax is probably not a good idea long term. Just once in a while is probably ok, but regular use can make the side effects worse, so try to avoid if you can. Also, very important to avoid fluoride. If your water is fluoridated, get bottled water. Eat clean—no GMOs, no gluten, organic when possible. Be especially careful of any meats that could have antibiotics in them. There are a lot of great posts hear that give advice on what has helped others. For me—it was IVs of high dose C, glutathione, phosphatidylcholine and H2O2.
thanks for your replay,
you now what is the big problem for me i feel I’m alone because I’m from arab country Jordan no one believe me thanks for the gad i found this web site now i want to stop taking xanax just i will take mag and high dos vitamin C ( really avelox change my life )
yes, these drugs are awful and life changing. The family drugs, fluoroquinolones are now thought to have KILLED 300,000 and injured up to a million. I am guessing you are not alone. There are surely others who have suffered from one of these (avelox, cipro, levaquin) They have likely been misdiagnosed as having fibromyalgia, chronic fatigue, or a number of other illnesses. If you want to try to connect with someone so you don’t feel so isolated in this you might try googling cipro toxicity + Jordan or fluoroquinolone toxicity + Jordan or the same with levaquin. avelox. Also, I don’t know anything about Jordan. Do you have naturopathic doctors there? They would be more likely to have an awareness of this. Anyhow, if you don’t…you’ve got us!
Hi faisal
Welcome.
With regard to your fast heart .
Please get your calcium levels checked . A low/high calcium level can make you feel very ill .
It is very important that the calcium level is at the right or correct level because CALCIUM is needed for the healthy functioning of every cell, every organ and system in your body. According to my neurologist anyway!!
What is your Vitamin D level? How much vitamin D do you take and how much calcium?
Please look up vitamin D toxicity.
Hi faisal You are not alone so do not worry. We are here to help you and each other.
xxx
Faisal, i have been floxed as well and I live in an arab country as well.
I knew that there had to be someone else. I imagine there are a lot of floxies in Arab countries just as here in the U.S. and everywhere else. Sadly doctors are so ill informed , they have no clue about how devastating these drugs are. And I am afraid that the not being believed is universal.
L, what makes things even worse here, is that anyone can walk into a pharmacy and buy Cipro or any other antibiotic without having a medical perscription. I see Cipro packets on the shelves of pharmacies and these are in their original packaging not refills like how it is in walgreens or cvs in the States, and guess what, there are no black boxes warnings on them whatsoever. People here believe in western medicine and think it is the best, so they take it without second thoughts. Many times, I see young women in their twenties being pushed around supermarkets in wheel chairs by husbands or maids….i always wonder if it was cirpo behind it.
That’s horrible! Although my doctor and pharmacy never warned me so not much different. I am furious that Bayer and Johnson and Johnson have put their greed over human suffering. It is unconscionable. And sadly people here have so much trust in the pharmaceutical companies, and the FDA. And if you try to educate them, they think you are exaggerating. I hope all our voices will make a difference…and very soon…and those who have done this get the justice they deserve, and our ranks don’t continue to grow.
HAD SIMILAR SIDE EFFECTS TO MY AVELOX. I PASSED OUT AFTER ONE AVELOX PILL. HEART RACE IS TACHYCARDIA AND IF MILD NO PROB. I USED 6 TABS OF AN HERBAL SUPPLEMENT AND THAT WAS OVER 3 YRS AGO. WORKS FOR ME. ALSO, GET A CARDIOLOGIST. HINT: DON’T BE SCARED, AS I LEARNED ALSO. AVOID COFFEE, ETC. EAT WELL, AND PROPERLY. -TOM from Fresno
Hi Tom I don’t now anything about this but what dya think.
http://www.microtherapypro.com/ xx
CINDY: THANKS, Don’t suffer from pain, but PERIPHERAL NEUROPATHY in hands and feet curtailing my Senior Olympics in track and field and Senior Hardball baseball world series action (MSBL) after 15 yrs. Depressing. Wish there was relief for my PN. Anybody know?
http://www.thejournal.co.uk/news/health/acclaimed-county-durham-doctor-banned-7387569
My advice would be to not take Xanax if you are already experiencing heart palpitations or fast heart rate, then see how you feel. I took Xanax for a couple weeks on and off- and all it did was create a rebound effect and actually created more intense episodes of heart racing and induced alot of anxiety that wasn’t there to begin with. This is what fools you into thinking you need it! It took a few months for the effects to get out of my system. Benzo meds, in my opinion, create a vicious cycle of anxiety and certainly would never help with getting over floxie meds. Everyone is different, however I don’t believe this med would be helpful for your heart.
Jane
I am prescribed clobazam for control of epileptic seizures. These are a benzo but especially for people with epilepsy. the side effects ate horrific. I could do with coming off them but it will take forever.
They cause depression as well as balance problems and incoordination of movement.
.
So, I’m about 4 months into this flox crap. My muscles and tendons are finally showing signs of healing, I have really good days and then bad days where I feel I’ve lost so much progress. I have been reacting very poorly to many different foods, from McDonalds (duh) to certain vegetables, etc. The reaction being, racing heartbeat, elevated pulse (100+ bpm) for hours afterward. I did a lot of research and the common element may be foods with high glutamate levels, well, that and foods that dampen the system that breaks down glutamate naturally. But either way, I see progress on that front as well.
But now, for about a month or so, I’ve had loss of smell and taste to a great degree, as well as a burning sensation on the front/tip portion of my tongue. I’ve read about that in particular and it’s common in menopause and pre-menopause (which I am) but funny how it started a month or so into being floxed.
I’m just curious if anyone else has had any of these strange residual symptoms?
I do not want to be dictatorial but … please please do not eat any take always, ready made meals or processed foodstuffs especially MacDonalds. Their food is notoriously bad for anyone with any food intolerances and for us floxies, gluten, wheat, soy, yeast, amaranth, aspartame intolerant
With regards to the burning in your tongue/mouth.
Funny -not really but you know what I mean -you should write this because for about four weeks now I have had a burning, tingling sensation in my mouth that increases after eating. It is very unpleasant. The burning of the legs etc is also increased.
I just hope that it will stop.sugar aggravates this.
I just had ab Adcal D chewable tablet and felt really ill. Phoned pharmacist who blamed the reaction on a faulty batch.
whoops. Take aways not take always!
Anybody had a problem with increased burning etc after eating avocados?
Hmmm, interesting you’re having that too! Well, that makes me hopeful that its just part of this and will go in due time.
Yes, I know. Thank you for the lecture…I need it. You know, I HATE McDonalds and normally only eat it literally about once a year. But since being floxed I crave it all the time, I have NO IDEA why that would be as right now its the absolute worst thing I could do. Strange.
Thank you for the reply.
I had nothing but trouble when taking D,, it always caused me panic attacks..so I don’t touch it anymore. Though I live in CA and love being outdoors in nature, so I get lots of sunshine. I think that’s the healthiest way to get it anyway. : )
Hi Angie Sorry about the lecture.
I get carried away sometimes.
I also have cravings for fast foods whereas previously I did not. In fact just written to a friend in the US about craving hamburgers but dare not have any, its simply not worth it.
I enclose a link to the pain master my physio e mailed it to me a couple of hours ago.
http://www.microtherapypro.com/
I May buy one but I do not know anything about it yet.
.
Cindy, I’m curious that you listed amaranth as an allergen. I’ve not heard anything about the ancient grain of the Aztecs being a factor in reactions. Could you give us more information on that?
Hi Christmas Carla
Amaranth is derived from coal tar which is a carcinogenic substance. Amaranth is used as a colorant , brown, and can be found in gravies, sweets, caramel. healthy foods such as muesli and as a colorant in MEDICATION. It is present in the ONE mgm tablets of warfarin made by actavis.
In me it caused respiratory problems, breathlessness etc.
I know it is a grain but am unsure if has been re engineered as a colourant. I will try to research it and find out more.
Best wishes
So interesting! Amaranth as a grain was a staple of the early South American natives. I read a book about it stating that the Spaniards decimated the Aztec civilization by ruining the amaranth crops. Then I looked up amaranth colorant, and yes, indeed, it does state it is a coal tar derivative and was banned by the FDA to be used in foods.
Here’s a description of Amaranth as a food from the website World’s Heathiest Foods:
Amaranth is a moderately tall, broad-leafed, bushy type of plant that grows about six feet in height and produces a brightly colored flowery head containing a very large number of seeds. (Amaranth plants can produce as many as 60,000 seeds.) These seeds are the amaranth grains found in amaranth cereal and flour. Amaranth is a member of the Chenopodiaceae family of plants and therefore is a relative of beets, Swiss chard, spinach, and quinoa. For this reason, some of its nutritional characteristics are more like these dark green leafy vegetables than the cereal grain foods, which are members of an entirely different plant family, called Graminae. (Like, quinoa and millet, amaranth is not technically a grain, but because it is enjoyed in meals like other true grains, it is usually referred to as such.)
When it comes to a good number of nutrients, including numerous vitamins, minerals, and amino acids, amaranth is very similar to other grains (like wheat) as well as to other green leafy vegetables (like Swiss chard). However, I’d point to four nutrients as being significantly different when it comes to amaranth.
First is the amino acid lysine. Most cereal grains, like wheat, are relatively low in this amino acid. Alternatively, amaranth is relatively rich in this amino acid, containing approximately twice as much lysine as wheat on an ounce-for-ounce basis. Next are the minerals calcium, iron, and magnesium. In this mineral area, amaranth is much more like Swiss chard than wheat. It contains about four times as much calcium as wheat and twice as much iron and magnesium.
And here is the description of Amaranth colorant from Wikipedia:
Amaranth, FD&C Red No. 2, E123, C.I. Food Red 9, Acid Red 27, Azorubin S, or C.I. 16185 is a dark red to purple azo dye used as a food dye and to color cosmetics. The name was taken from amaranth grain, a plant distinguished by its red color and edible protein-rich seeds.
Amaranth is an anionic dye. It can be applied to natural and synthetic fibers, leather, paper, and phenol-formaldehyde resins. As a food additive it has E number E123. Amaranth usually comes as a trisodium salt. It has the appearance of reddish-brown, dark red to purple water-soluble powder that decomposes at 120 °C without melting. Its water solution has absorption maximum at about 520 nm. Like all azo dyes, Amaranth was, during the middle of the 20th century, made from coal tar; modern synthetics are more likely to be made from petroleum byproducts.[1][2]
Since 1976 Amaranth has been banned in the United States by the Food and Drug Administration (FDA)[3] as a suspected carcinogen.[4][5] Its use is still legal in some countries, notably in the United Kingdom where it is most commonly used to give Glacé cherries their distinctive color.
From what it says in the first paragraph, this dye was named after the Amaranth plant, but it appears that it is not made from the Amaranth plant. I have been adding Amaranth and quinoa to my organic brown rice, which I consume daily for the correct amount of fiber in my diet. I was concerned about the dye issue, but I think it is not connected to the grain other than the name.
Hi Angie,
I definitely have flares of muscle aches and pains. Good days, then bad days. I haven’t really figured out the triggers yet. Have you noticed triggers? Also, did you have any hair loss? Thanks
Hi Angie, Tom, Lisa, Debs, Steph, Nicole, Bob everyone sorry if I have left anyone out.
I took ONE f…… Keflex and guess what has happened YES guys and guyesses
the burning in both legs , stiffness, pain inflammation has worsened.
I cannot stand it anymore. Please help me.
The FDA is a obscenity on the landscape. In bed with Big Pharma .Morally corrupt, wrecking lives. Hiding data about these toxic substances aka antibiotics.
I am clutching at straws.
URGENT
. .
I would be grateful if all you guys could please, please help me to find a pharmacy that will sell Vit b12 injections without a prescription. I need to try even if it only to obtain the placebo effect.
The muscle pain, stiffness, PF, burning is now intolerable and I require every bit of help I can get. I want to try the Vitamin B12 injections because my VIT B12 is low. Nothing has ben done about it o course so it is up o me to take responsibility and try .
Do you have anywhere to go to get an IV? Have you tried the sublingual B12 drops? I don’t you can get the shots without a prescription.
https://www.bing.com/search?q=fluoride%20alert%20.com&form=WNSGPH&qs=SW&cvid=0eb37fb9b58a4a4490b3579b76517e45&pq=web%3A%20fluoride%20alert%20.com&nclid=A47C182D5B0608D89F144F0605038E96&ts=1468193047808
Hi Angie
Is the burning always present or just after eating or eating certain foodstuffs?
Have u seen Dr Mercola latest newsletter and what he has to say about MacDonalds burgers? Mercola says that these things are not decomposed for several YEARS in our bodies!
http://articles.mercola.com/sites/articles/archive/2016/07/14/opioid-overdose-report.aspx
Has anyone experienced hair loss from Levaquin? I hear yes and no and hoping somebody has had this! I read that these drugs can deplete the body of specific vitamins and cause hair loss? It seems too much of a cooincidence that it started a month after my last round of it. I had hair loss due to a blood infection & once diagnosed and given IV meds and oral Levaquin 8 months ago the hair loss increased which I knew had to be the mixture of infection plus meds. My hair finally settled in January, since I was finally recovered. BUT in April was feeling crappy still without reason (now I’m convinced it’s after effecst of illness or meds) doc gave me 10 more days of Levaquin and I’m kicking myself because I don’t believe I truly needed it. It was just given for no good reason. One month later- hair loss again. I feel like it has to be connected to the med. Any thoughts or insight would be great??!!!!
Due to an ongoing and sever allergy I have been put on LEvaquin, Cipro separately and at the same time for almost three years. HAIR LOSS is significant. Had a complete thyroid panel done and was normal. All blood work is normal except red and white blood counts extremely high. High red count is due to immature red blood cells my body is producing i think to try and outrun the mitachondria killing floxies. Thats what makes them so deadly, they kill the mitacondria in your cells so they cant reproduce. These are CHEMO drugs approved by the FDA for general antibiotic use.
Hi PPJ
High level of white cells can indicate an infection.
High RBC can indicate polycythaemia. Has anyone investigated this? Has anyone ordered a CRP, ESR or antibody tests?
Did the dr order a thyroid antibody test? If in the UK then the answer is more than likely to be in the negative. Blue Horizon blood testing does a very comprehensive test of thyroid 12 for a competitive price in the UK. Please note that I do not work for them I am just conveying information.
If you look at their website you wil see the tests that SHOULD be being done in order to do a PROPER FULL THYROID SCREEN. Drs only d TSH and sometimes T4 and rarely thyroid antibodies. That’s why people suffer for decades with a thyroid disorder when they could be treated. A disgrace to mankind.
End of rant – I think.
http://www.thejournal.co.uk/news/health/acclaimed-county-durham-doctor-banned-7387569
HI, yes I had hair loss. came out in chunks in the shower. it is now, months later, starting to grow back normally. this is no surprise since these are FAILED CHEMO DRUGS.
Did your hair loss gradually slow down Or just stop altogether? I noticed a gradual decrease the first time- but I was on IV Vancomycin and oral Levaquin at the same time!
Here’s a link to another water pitcher brand that removes flouride. The brand is Zero Water, and their products are sold in stores like Walmart. The statement from the company is, “ZeroWater filters are not certified for the reduction of fluoride, however, fluoride is an inorganic compound. The TDS meter is designed to detect inorganic compounds. Fluoride levels in water are usually around 2 to 4 ppm, which will show up on the meter as 002 to 004. So when filtered water reads 000, it is not likely that fluoride is present in water.” So even though the product wasn’t specifically certified to remove flouride, water testing shows that it does. I hope this helps someone.
https://www.zerowater.com/zerowater-products
yeah, I purposely avoided the zero brand because of the fluoride (aka cryptonite) issue
Hey L, my understanding is that Zero Water filters do remove flouride. That’s why I included the quote from the company. I know it’s not been specifically certified for this type of removal, but flouride is an inorganic compound. So if Zero removes inorganic compounds, it should remove all/most of the flouride present….unless I’m not understanding something from their statement.
wow, that’s weird, because when I saw one in bed bath and beyond, I went home and emailed them and they said it didn’t…..
I just bought one while I’m waiting for my pure water freedom pitcher to arrive. The Zero pitcher included a TDS meter in the packaging as a way to see when the filter starts going bad (You stick the device in the water and if any light is seen from the meter’s LED, it’s time to replace the filter). Anyway, I tested it on my crystal geyser water first, which has a little flouride in it, and the light went on. Then I poured the same glass of water into the Zero pitcher and then tested it again. No light show this time. So the pitcher is obviously doing something. lol
Great!
Thanks for this information Ryan!
By the way, how’s the burning? Mine is better but now I have hives so watch out!!! (:
Had my shoulder ultrasound yesterday & Dr wants to see me right away so I am sure it has a tear or rupture. If so I can imagine the shape my feet are in as hurt worse than shoulder! Yah!
IV day so got to run!
Have a great day!
Nicole
Just starting to explore IV’s. Can anyone give pointers and generally how to approach this?
They saved me. Here is some basic info, but all of these do much more than what I am listing: High dose vitamin C (You will need a blood test for this one because a very small % of the population cannot get it.) It is good for helping to rebuild collagen (again, among many other things). Phosphatidylcholine (one of my favorites) it is recommended you get at least 20 of them or more. THis is great for helping with nerve damage. Myers…has B’s (also good for nerves) as well as high amounts of magnesium. Great all around for immune function and many things. Your ND or integrative dr should know which ones would benefit you most. I always got each of these with a push of glutathione, the master anti-oxidant. I also got H2O2 because I had to wean off of steroidal asthma drugs (successful!) but this bathes all your cells with oxygen, so another option. (This one cannot be taken with glutathione.) You can find info on most sites for NDs that give IVs. Here is one http://www.pacificnaturopathic.com/iv_vitamins.html
Thanks L. It looks like H2O2 would be a separate provider from the other IV’s like Mg, Myers, vitamin c, glutathione. Phosphatidlycholine too?
Should I consider going straight to a wellness center that provides the IV’s or see a neurologist first? I’m feeling confused what is the best route now that I am considering IV’s. I’ve tried lots of supplements and diet with my ND(who doesn’t administer) and other means to ease the symptoms and I need to consider the next treatment options.
The neuropathy burning pain in my body mostly feet, arms, shoulders, some torso is what I need to address. Feeling fatigue and just out of it in general too. Brain fog.
One I’m considering is http://www.proactivwellnesscenters.com Does this look like the right direction to take a a provider like this?
Hey Nicole,
My burning is still fluctuating. Today was pretty rough, but yesterday it was practically non-existent. Hopefully I will have more days like that.
I’ve not yet tried IV’s, and based on some other peoples experiences, I may not ever try them. I’m waiting on my 23andme test results before taking the next step in my recovery. I figure those results will help me know whether or not IV’s could be an option in the future.
Anyway, i hope your ultrasound is good and that you had a great IV treatment.
Ryan and Nicole,
How far out are you? I’ve read your posts on the body wide PN which I have. It’s now mostly in my arms, hands and feet but also in my middle torso/chest and collarbone area and front of neck and times. Other more secondary places are thighs, calves, sinuses, top of head, stomach, back and rear.
Have you had fatigue also? The fatigue for me is a big one. I’m really trying to understand what is causing the fatigue so I can address it and get through a day with some energy. Any suggestions? Any experience with addressing adrenal fatigue?
You may want to research Mitochondria. These cells are what give us our energy. I’ve read that it’s like, “gas in your car.” It’s what makes us go and, unfortunately, these bad meds affect our Mitocrondia.
Hope this is of help to you and others.
Blessings,
Deborah
I’m getting a muscle biopsy so the Drs can look at my cells I’m nervous because I have to be put under to do it. I’m spasming worse than before. I am loosing control of my body. I need this done do you think they will see that my mitochondria are being attacked? I need them to see to get it. It’s going to take 8-12 weeks to get results. I need this done because I am losing ability to function it’s bs I am 35 and I can barely walk I am gasping more than ever I have no money because social security I’m waiting for approval and trying to get long term disability. I would be homeless if not for my boyfriend. He is my only family.
Hey Deanne,
I’m sorry to hear that you are also experiencing the PN stuff. I’m about 5 1/2 months into things myself, and I’ve not really had much fatigue, but I’ve had a plate full of other symptoms that come and go. My main problems today are tendon pains, knee pain, PN, liver pain, and digestive problems.
For fatigue, you may want to have your hormones checked as well as your iron. An endocrinologist is the type of specialist who typically tests hormones (A good ND may also be able to test them). If your bloodwork shows that you are low on iron, you can supplement, but make sure it’s under a doctors supervision (You don’t want too much).
You may also want to read Daniel L’ story and all of his comments. I recall him having had adrenal fatigue that he discussed somewhere on that page. I hope this helps.
Hi Ryan,
You mentioned in another post that you would consider if you were able to get IV’s. I was wondering what your considerations or hesitations were-are?
Deanne
I just received my results from 23andMe but not sure what to do with them to understand if I should do IV’s. I’m getting desperate as my PN and all over nerve pain, and fatigue are just so debilitating.
I haven’t gotten them yet, but my ND said when I get them I would need to have her review them.
Deanna, you need to get the results translated. There are a couple sites that can do it. One I recall that does it is genetic genie. You upload the data and it will let you know if you have a genetic mutation. From there, I’d recommend discussing the results with your doctor before proceeding. Some doctors have a better understanding of this stuff than others. Your ND is a good place to start since they tend to be more familiar with this stuff. If they can’t help you understand it, they can probably recommend someone in your area who can. Even if everything looks fine, you still have to make the final call on whether or not to pursue an IV treatment.
http://geneticgenie.org/
Hey Ryan,
I am pretty much like you, had a day or two that burning was almost gone. I am in a bit of burning again but I had to give in & take a antihistamine for the hives from whatever?! The burning is not as crazy as at first but still travels around at all the similar places you & Deanne are having them. Do not really have any other PN symptoms much thought. Still mainly tendon, muscle pain, liver ( 1st pill gave me hepatitis ) and the old gut!
So Deanna I am pretty my in the same symptom boat as Ryan and I am a little over 5 months as well.
And guys I will admit that the IV’s probably unload the toxins in the system & will cause some not so fun days but we have to get this poison out! I am 65 & do not have years to wait! LOL I believe in the IV’s, even if it is unpleasant.
I have researched this thing to death & read every book & paper on this & the IV’s still seem to win the protocol. I have done 12 weeks of a weekly IV, have laid off the glut. every week how but still take the Myers. The IV seems the best way for me to absorb the C, B’s, and mag., Ryan because of my gut issues.
I do have fatigue Deanna, but not a bad issue for me. I had my iron checked & was actually in overload. Dr. thinks probably because of the liver dumping it out.
And Ryan my shoulder did have a half inch tear but we are letting it go because he does not think the tendon it is in will tear anymore. Ultrasound does not work well on the feet so would need a MRI to check them. Good luck to me on that one in socialized medicine world! LOL
Deanna, I do find relaxation really helps the burning so try to chill. Oh…. and ice as well!
Tie a knot in the end of your rope guys & lets all hang on!
Nicole
There is also another o.com.ne H2o.com or H20
Cindy
I now have a multi modular goiter too. What can we do about it?
Nicole
How much l glutamine do you use and which brand?
I actually use a brand my chemist makes even though my NP had a brand she likes but the jar was so big I just did not have any room for it. I have my appointment with her on Wednesday and will ask her what she suggests. I only put a teaspoonful in a small glass of water. My jar says 250gm L-Glutamine power.
Thanks Nicole. I avoided gluten , soy, corn, avocad0os today the burning has decreased a bit but still bad
My physio sent me details of the pain master electronic device to control pain. I haven’t looked into it yet.
I wondered what other people thought about it. here it is.
http://www.microtherapypro.com/
I’m using a similar machine that admits electric signal like I do at my natural path office. I picked up this one at my acupuncturists office. It’s similar to a tens machine but I think you can set it lower so it’s not as intense. It does help to block pain signals my ND said. I just put it on my upper arms near my shoulders and it generally seems to calm down the peripheral neuropathy in general that I have in my arms and feet and sometimes in my middle chest abdomen area. I have neuropathy in other parts of my body but they come and go throughout the day and not as often.
Another tool for relief that I have been using for the neuropathy is Cayenne ointment by Christopher’s. or similar to Capsasin cream. Christophers formulas are available on Amazon as well.
Need an ultra sound scan to see what is going on. Try not to worry. How did u find out?
Hi friends,
I have had a friend in town for the last couple days, and, as many of you saw on FB, I was also busy celebrating my upcoming nuptials. I’m about to go on vacation all of next week too. So, basically, I’ve been occupied and will continue to be occupied for a bit longer. If you’re waiting for me to answer a question that you posted in the comments on this site, can you please email the question to me through the Contact link on Floxie Hope? I’ll be able to get to it through my email better than I can through keeping up with the comments. I apologize for the neglect and I appreciate everyone who helps and supports everyone else and helps me with answering questions! 🙂
xoxo
Lisa
Happy happy happy happy upcoming nuptials!!!! So happy for you!!!
Anyone have thoughts on going round and round with trying to understand if symptoms are floxed, Lyme or Fibromyalgia?
There was recently a discussion on this, if you want to do a search through old posts
Yes/ all the time. Feel very annoyed about the whole scenario.
I wish I had gone into politics so I could do something about this big mess.
Symptoms can be very similar, like peripheral neuropathy and muscle/tendon pain. Best to get a Lyme test to rule out Lyme (from IGeneX lab). I have both.
Well congrats & happy, happy young lady! Post pictures!
💍👰
Hugs,
Nicole
Is there a test for Lyme Disease I wonder? Ask Blue Horizon.
Yes, there are several tests for Lyme. Just don’t get the basic one from Quest, etc., it is useless. Misses half of the cases. Best is to use IGeneX lab, or Advanced Labs Culture test. There is also a new test ISpot, which I don’t know anything about yet.
Anyone here see any connections with their floxing and water-damaged buildings and/or mold?
I have so so sick with what my new doc says is mast cell disease. I am convinced it is mold toxixity. Have had swelling of face, lips, eyes and overall feeling very ill for the last week or so. Mold is also reading high in my area. Looking for a doc who will test me for mold. Never had this issue before cipro………
Hey Carol, I would try to find an ND that does IVs. When I was getting mine for the Cipro, there was a woman there with extreme mold from her workplace. So bad she was on disability from it. A lot of the IVs/ozone were the same that were used to treat the Cipro (and Lyme)
Black mould eats away at lung tissue destroying it. Need Immunology testing and also fungus testing.
See causes of Occupational Asthma/Isocyanates and asbestos.
Read up about blue asbestos, brown asbestos, white asbestos.
Blue asbestos is banned but may be lying dormant in old buildings especially schools, hospitals, prisons.
Also google fibrotic and non fibrotic lung diseases and function testing.
Some medications can cause pulmonary fibrosis. pls google drugs.com.
Thank you! I saw my doc today and he’s doing some allergy testing to testing to start and I’ve called an immunologist…they have quite a wait……I will follow up on the other information too…thank you
Hi all. Coming up to my 1 year mark post floxing with cipro 1 week of 500mg 2x a day. Constant PN in both feet but more clarity of thinking, though I am still highly anxious. I have little desire to see anyone, be social. I am going to 12 step meetings so I’m not totally isolated… but does anyone else experience lack of social interest? Thanks!
I did Ned, for quite a while. I am not sure if it was lack of interest though or just the over-riding anxiety. It was also difficult to be around more than one or two people at a time. I am a stage actor, so that was quite contrary to my normal way of being. That has gotten much better. (I am about 1 year and 5 months out, and I think I started easing back into things more socially just a few months ago.)
Yep. I was called Mr. Excitement this weekend by a guy who is not familiar with my situation. Don’t even try to explain. A lot of difference this 4th of July from last. I drank a couple of beers but still just sat back in the shade and enjoyed life.
Thanks Bruce, glad to hear you’re enjoying life now that you have a new moniker. Haven’t had a beer in 18 months. How long out are you?
July 4 was 1 year from 2 rounds of Levofloxacin.
Ignore this ignoramus.
I meant ignore the ignoramus who called you Mr Excitement.
L, I left a reply a few minutes ago but didn’t see it on thread. Again, thanks for your comment which is very reassuring.
NED, I too have little interest in anything social. Highly unusual for a runner up CA STATE Senate candidate. Also have PN and feel it getting worse. Any suggestions?
I’m in California….which seat were you running for?
L, California State Senate then 14th district, Fresno.
Tom, my PN has gotten worse, it seems, over the last few weeks. My podiatrist has referred me to a neurologist and prescribed gabapentin which I have not taken over concern for side effects but its supposed to ease the burning, numbness. I have read on this site or another of those suffering for quite a while from PN. There is a black box label on this drug for PN. Otherwise, I’m in the dark like you. I also have metallic taste in mouth and high anxiety.
Ned, my PN is mostly a balance issue with numbness.
I soak ’em in cold water at night. They’re better in the morning.
I had what tasted like “baking soda” for a long time but it did eventually go away. My PN is numbness, which I guess is not as bad as pain (I more than made up for that with suffocating breathing problems, vision problems, choking sensations, major gut issues, etc). When/if i get some money again I will go back to the ND that helped me so much before, and get more phosphatidylcholine IVs (they help with nerve damage) and he also has some sort of electric unit he wants to use on it. I would put my trust/faith in a good ND because with regular neuros all you are going to get is drug recommendations.
I have PN also and it seems to be getting worse. last summer though I had a spell that that it didn’t seem so bad and I don’t know why. I am determined to get to the bottom of this as I refuse to live the rest of my life this way. I suspect you have a metallic tast in your mouth because you are detoxing heavy metals. You should probably get tested and get expert help on detoxing. I have been told I have mercury and have used cilantro and zeolite to detox. You have to be careful you don’t go to fast so you don’t hurt your kidneys.
Thank you, Bob!
https://www.bing.com/search?q=fluoride%20alert%20.com&form=WNSGPH&qs=SW&cvid=0eb37fb9b58a4a4490b3579b76517e45&pq=web%3A%20fluoride%20alert%20.com&nclid=A47C182D5B0608D89F144F0605038E96&ts=1468193047808
Ned and L
Same here but floxed two and a half years ago. Am looking into Joshua Tuckers books and dvds.
Pls get Bit b12 and B6 checked .Need Vit B Co in conjunction with the B12 and B6 , B7 to work and to raise ferritin levels. Also need magnesium to counteract the damage to connective tissue.
There is NO safe antibiotic/
I hate ALL antibiotics. ALL.
Thanks, Cindy! I take magnesium orally and have a transdermal spray. I will get the VB’s.
I was floxed 3 years ago and I still don’t want to go anywhere or talk to people. I do but I don’t want to. Everyone asks, “how are you doing,” and I don’t want to tell them and they don’t want to hear it. You should probably try to get out though.
I agree, I feel much better after meeting others. I go to 12 step meetings, its a ‘safe’ environment. I speak to a good friend every week. When interacting otherwise, I have to just put my best foot forward. I don’t send out a lot of email or phone calls…I can have an anxiety attack. Got it on the magnesium, VB’s. Have to be careful with detoxing, I have a blister on one of my kidneys. More careful of what I eat. One day at a time and easy does it.
Same applies to me. Please can I have your e mail address.
Yes I do. It was/is a major symptom and I think connected to the damage to the GABA receptors in the brain by this f…… fluoroquinolone poison.
Sorry if I sound bitter. Its because I am.
Happy wedding 😀
I don’t believe we would get any help from either one. Trump is not mentally or emotionally stable enough to run anything except his big mouth. Hillary is simply a crook. We are on our on.
Bernie is obviously not going to be the nominee but he is not beholding to any of these corporate interests. Just look at the recent vote on GMO’s by the senate. It was like 2 to 1 for a Monsanto dream bill. Bernie campaigned against it. My own senator Sherrod Brown which I usually like voted for it. IF YOU ARE TAKING MONEY FROM THESE PEOPLE YOU HAVE GIVE THEM WHAT THEY WANT OR THEY CUT YOU OFF. Then they would have to get off the gravy train and get a real job. Bernie is the only presidential candidate in recent history that ran a campaign on small donations no corporate money. The supreme court says money equals speech. Probably the second worse supreme court decision in history(Citizens United), Dred Scott was the worst. FDA is so corrupt it needs complete overhaul. No president can do anything without Congress and they are hopelessly corrupted. If we want to get healed we should forget about these a-holes and do it ourselves. The only thing that will take down Bayer and Johnson and Johnson is enough people connect the dots and don’t buy their poisons anymore.
Yeah, I have written SO many letters to politicians, the world court in the Hague, the attorney general, and on and on, about looking into the fraud and corruption between the fda and big pharma. Nothing. You are right. It is going to take people just rejecting their poisions. Sadly, re GMOs so many people are just struggling to get food on the table, that it isn’t even on their radar.
There is a good article in the most recent Mother Earth News about GMO’s by a plant geneticist. The worst problem is that most of them are sprayed with Roundup, a probable carcinogen by the WHO. In the mid 90’s farmers started spraying their crops with Roundup to dessicate (dry) them. That is about the time that many people, including me, could no longer tolerate gluten from the grains. I have heard of celiac victims going to Italy and having no problem over there with gluten. We are being poisoned by big pharma in the drugs and the food. They have absolutely no scruples of any kind.
And THAT is what I find so unfathomable…when you look at ALL the people involved in this corruption, from CEOs to politicians, to employees…on and on. How SO many people can be so ethically bankrupt.
I believe its the power structure in each of the organizations. There are people who want to come clean but they are told to shut up or lose their job. So then it becomes an issue of personal survival. Who wants to be a martyr? This is what is happening at the FDA. Those in control do not follow the recommendations of the people evaluating the drugs. they are told to pass them anyway because the guy in charge has a big fat job waiting at big pharma when he gets out. If you put a rotten apple at the bottom of the basket the whole basket goes rotten. The world is ruled by fear imposed by the bastards at the top. Those people get their jobs by agreeing to play the game from the start. The public has been brainwashed to believe the govt is out to protect them even though it is painfully obvious that is not the case. We are expendable as far as the govt or corporate America is concerned. We have a govt structure that makes it possible to have a good govt but you have to fight for it. Most people sadly have no clue what is going on and they vote for idiots or crooks because the talking box tells them to.
BOB: Not all current or past politicians are corrupt or inefficient. Just ones like and who have most of their paychecks stamped with a government seal. They tell to what you want to hear and the room-temp IQs actually believe it.
Good luck. I have never liked nor will I ever. As far as I am concerned he is nothing but a con man and opportunist. He has scammed everyone he ever did business with. has fought against corporate domination his entire career. I would take him over any day. however has proven herself to be a corporate whore and a liar.
Totally agree Bob. I feel the same way. There is still hope for don’t give up hope that will turn things around.
Please don’t put in that category. From day one he has walked the walked. He is about as uncorrupt as you can get
BOB: Not all current or past politicians are corrupt or inefficient. Just ones like and who have most of their paychecks stamped with a government seal. They tell to what you want to hear and the room-temp IQs actually believe it.
I agree. LOL!
Bob but there is a chance and worth to try.
If in USA this FQ problem will be resolved all world do the same.
There was small victory in FDA (meeting with 100 or sth floxies)
so this is small step to victory.
Trump or Hillary – FQ toxicity is American people problem and president, government, senators should take this case. They represents you,
you voted.
Oh, how I wish our representatives truly DID represent u. Sadly, many are “bought” with corporate money and the corporate lobbyists are the ones who win. Also, Bayer, maker of Cipro, is a German company. They need to be charged with crimes against humanity.
“us” not “u”
I need to have a tooth extraction. Has anyone taken Percocet after floxing, and if so, any problems? Or what pain medicine works best for floxies after extraction? My dentist is a holistic dentist, but he will prescribe me pain med just in case I need it. He has a clove oil paste his patients use, but said sometimes pain med is necessary.
Or Vicatin (spelling?) Basically, Hydrocodone with Acetaminophen or Oxycodone with Acetaminophen.
Hi Amyers,
I took after hernia surgery with no problems.
Take care & best wishes.
Deborah
I’d be more worried about the added NSAIDs in the meds. I wonder if there is a pain med that comes without them?
Fatigue is just so debilitating. Has this been a common symptom for floxies in general?
Any tips that worked to get the energy back?
Yeah, Deanne. Sucks. I used to have SO much energy. It does come back…slowly. I am about 16 months out and energy is much better than say 6 months ago, but still not back to normal. I imagine mitochondrial damage has something to do with it. I take supplements to try to help the poor damage mito, like coq10, pqq, resveratrol, ala, etc
Hello Floxie family,
I am a 31 year old male and 4 months into this nightmare. I was not floxed as hard as many others but am still dealing with this. My symptoms are/were as follows:
– CNS issues: Depression, anxiety, brain fog, panic attacks
– Rapid heart beat
– Nerve damage & possible tendon damage in my left hamstring
– Body-wide myoclonic jerks
– Some other tendon issues that appeared 3 months in
The CNS issues have mostly cleared up, heart beat is normal again, the myocolonic jerks have died down, and the tendon issues were never severe. They came at 3 months in but only lasted 2 weeks and have cleared up (for now). My main issue is that I still have this darn cramping in my left leg that refuses to let up. It is not painful, just uncomfortable. A dull, numb, cramping feeling in my hamstring and buttocks. And lucky me, I have a desk job that aggravates it. The symptoms do not align with the definition of PN. No tingling, no pins and needles, no pain in feet…just a weird dull/cramping/numbness in my hamstring area. Some days it is barely there, other days it is throbbing. It has gotten a bit better since early on but at this point I am convinced I have permanent nerve damage in my leg. I gave gotten a few Glutathione IV’s which offered some relief but not for long I can still walk just fine, even run (though I choose not to), bike ride, lift weights…pretty much anything but there is just that extremely ANNOYING and depressing feeling in my hamstring/buttocks that refuses to let up.
I too am pretty anti-social but mainly because of the feeling in my leg. How can I enjoy a night out when my leg is aching? I work full time and am in the last month of my masters degree and was looking forward to my future and now I look forward to nothing except the day when my leg feels normal again. I have no interest in seeing a doctor because I know there is nothing they can do. I refuse to take any sort of medication so what can they really do? Nothing. Although now, at four months out, I am considering seeing a neurologist or getting an MRI possibly. I consider myself a strong person but I cry just about every night with the fear that I may have permanent nerve damage in my leg. My questions to Lisa & everyone are the following:
– Has anyone else experienced this feeling?
– Does this sound like neuropathy to anyone?
– How likely do you think that this is permanent?
– Lisa mentioned Phosphatidylcholine IV’s earlier…was wondering if anyone else had these and how much did they help?
– Also heard things about a live chat for Floxies…does this exist anywhere?
Thank you all and a special thanks to Lisa for providing us with so much support. As far as I’m concerned, we are all a family.
Hi John,
I’m so sorry you are experiencing the hamstring pain. I was given levaquin in ’13 and was diag with PN in my rt thigh in ’14. Painful with feeling of pins sticking, burning & numbness. Visited two different Neurologist who were no help. I had an umbilical hernia which needed repair. One of the Neuro docs believed the surgery would “fix” my leg, however, it did not. I was working a p/t job where I was standing on concrete floor. This made my leg flare worse. I left the job in Jan & leg is better. I take Magnesium supplement and use Magnesium oil spray topically. It does help when leg flares. Also, take SAMe supplement. It always there and has not gone away almost two yrs later but is much better!
I wish you the best and pray you can find some relief….understand it’s no fun!
Take care, Deborah
Thank you both for responding. The feeling in my leg is very strange. No pins and needles, no burning…just this strange, dull and heavy feeling…and yes, I am taking Neuro-Mag and chelated magnesium. Just really hope this is not permanent but I believe it most likely will be…at least long term. Just hard coping with the realization that my leg may never feel the same. Thank you all again.
John Have u injured your back at all? Have u had an MRI scan of your spine? It sounds to me like sciatica that can be treated. I have just received an e mail from my phyio advising me to get a micro therapy machine for pain control. Pain master. I have to look into it. It is a lot cheaper than physio but nevertheless I will have to think about it very carefully.
My physio recommended traction to take the pressure off the verterbrae.
You may have a vitamin B deficiency and low Vit D. However u really need to get the levels checked to establish a baseline anyway.
Then afterwards the vit D level needs monitoring. There is an e mail from ?Dr Osensky about the dangers of over medicating with Vit B12 so u really do need to be careful Also anaemia especially pernicious anaemia can cause that heaviness in your leg.
You also need screening for diabetes.
I’m really sorry for your symptoms and distress, John! It is so scary to think our symptoms might be permanent. From what I hear, they rarely are, though. Are you on long-term, high-quality magnesium? It might help with the PN. I’ve not had PN, luckily, but long-term Mag. is slowly helping my tendon pain, I think.
I got phosphatidylcholine IVs—over 20 of them. They helped me a lot with nerve pain and just overall. I also got a push of glutathione with each one.
This one doctor I go to gave 20 of those IV’s (PHSTDCL) to a flox victim and it didn’t do much. I have been reluctant to spend the money on them as they are expensive. How many did you get before they helped? I have bad PN in my feet.
well, hard to say because I was also getting high dose c ivs and h2o2 in between. The first really noticeable change was after about 4 or 5 of them. I had excruciating pain midback—like it was buried deep in the bone. really indescribable—worst than when I had three cracked ribs. That went away and never came back.
Hi John Yes I feel the same way.
I feel as though I have let my husband down .I am having a flare up but don’t know why really.
Please can I have your e mail . No offence if you say no.
Hey Cindy,
Thank you for your response. No, I have not injured my back at all. The feeling started about a week after taking my last pill of cipro so I am certain it is from that. It started with a cramping/painful feeling but that has subsided. It is now just an occasional numbness. I got blood work done and it all came back fine. My B levels were low so I have been taking high doses of B12 Methylcobalamin. Also taking Vitamin D, probiotic, Neuro-Mag, Vitamin E, Fish oil, and Colostrum.
And yes, feel free to email me. My email address is MachidaEra@AOL.com.
omg I’m so glad I found this website before using ciprodex (or neomycin for that matter. I’m notorious for researching everything cuz I’m a health freak. So naturally, I freaked out when I read that neomycin can cause permanent hearing loss so I had my doc switch the prescription and it was for ciprodex. Well, I’m glad I did my research on that too. I was seriously considering taking them tonight cuz most of what I had read made it seem like it wasn’t as bad as neomycin. Until I read about floxing. I already have several debilitating health problems and it really gets unbearable at times. I know exactly what it feels like to deal with a health problem that is either permanent or has the potential to become permanent…OCD, Anxiety, Tinnitus & Morgellons to name a few. And just this past week I got an ear infection and sciatica which could be piriformis syndrome or a herniated disk in my back. And last month I experienced a brief episode of essential hand tremor. It’s when your hand shakes uncontrollably in certain positions. It only happened once so I dunno what caused it. But usually when I go through anxiety, body shaking & trembling is the most prevalent symptom. So I’m guessing the physical effects of constant anxiety are having some kind of long term effect. So yeah, shit just keeps piling up and it’s really frustrating).
Anyway, speaking of my ear infection, I’ve been searching the internet desperately for alternative medicine. So far, olive oil & garlic or white vinegar/apple cider vinegar & rubbing alcohol are the most popular recommendations. Has anyone on this website tried these remedies for ear infection? Do they really work? They can’t be worse than those awful prescription drugs. I’m kinda afraid to try anything though for fear of making it worse (specifically my tinnitus…I sometimes have to sleep with a fan in order to ignore the ringing in my ears…I really don’t wanna provoke it and make it louder. That’s the whole reason why I got my ears cleaned by a doctor, cuz I thought ear wax was contributing to it, and that’s why I got an ear infection. So yeah, I made it worse anyway. Go me -.- But seriously, I feel like I should do something. Doing nothing worries me too. I’ve read that most ear infections go away on their own but at the same time I don’t just wanna sit around and wait for it to spontaneously disappear. It could get worse and then what? So if anybody has any advice it would be much appreciated!).
Haven’t tried those, but for othe infections I have used oil of oregano. Get it from a reputable brand. You put a drop or two under your tongue for a few mintues. Tastes absolutely GROSS…but got rid of sinus infection, and I have heard it works for other infections. I am wondering if there is a way to use it directly in the ear…I would research that
You need to ask your ent to do a swab to know what pathogen is causing the infection. The common one is psedomonas (spelling) or swimmers ear and this one is easily killed using ethyl alcohol. garlic is good. I dont know about ACV. Olive oil soothes the skin inside the ear as well.
Hello everyone,
Here is my story. I was a healthy, 40 year old husband and a father. I am also a very successful professional. I awoke in mid February one night in severe groin pain. I was seen by a GP and told i had uti/prostatitis and put on cipro for 20 days. In the meantime, all tests including prostatic fluid, urine, blood and ultrasound were all normal, they even tested for STDs without merit and they were all clean of course. Anyway, my pain began to subside on its own but i finished the whole course. Fast forward to mid March, one night after intercourse my penis was in severe pain. I had burning pain throughout the genital area, severe burning and tingling. It was unbearable and it hurt to touch. I have seen multiple urologists and doctors. I have noticed a physical change in my manhood. The shaft has gotten thinner and it seems detached at the base and hangs very loose and lifeless. Its as if the tissue has degenerated on the shaft. And i think there’s nerve damage in the area as well because even five months later, its very sensitive to touch. My question are: has anyone experienced anything similar? Secondly, am i way off base thinking its Cipro? Thank you so much for reading and i hope uou find relief.
as a woman of course I would not have that issue, but have had a parallel issue–but wanted to say 1) Not at ALL off base regarding the Cipro. It damages collagen and connective tissue. It can also reap havoc with nerve damage 2) I had pelvic area pressure and internal pain after the Cipro. A couple times it has felt like I had ground glass inside me. I went to a urologist who did an ultrasound, and there was nothing, as happens with FLQ toxicity. The damage is usually functional, not structural so most often tests come back negative. I would find a good ND or integrative doctor, as they are more likely to be familiar with fluroquinolone toxicity. If you mention what area of the country (are you in the US?) you are in, perhaps a fellow floxie here can direct you to one.
Hi, thanks for responding back. I am in Toronto, Canada. I have scoured the internet and haven’t found a similar story but inthe absence of a diagnosis, i keep coming back to Cipro. Guessing my sex life is pretty much over and now i must find a way to manage the pain.
Hi Cam. Also in Toronto. Can anyone suggest name of neurologist familiar with Floxie situations?
Hi L, one more question. Tunica albuginea is the collagenous tissue that supports and facilitates erections and i can still get erections. I am not sure if that is a good thing or not. I am in such a shock that this is happening. I hope its something else but may be thats just wishful thinking.
I don’t know, but one thing that can help repair/rebuild collagen is IVs of High Dose vitamin C from an ND or integrative doctor. What helped me with the “pressure” part also was acupuncture and herb pharm’s urinary system support.
I think its the cipro. A doctor I see treats another floxied patient who has had a similar problem. I wish I knew what to tell you. The only thing that comes to my mind is to take “deer antler”. I think its by Dragon Herbs. I was taking it for awhile and I’m going to get more.
Thanks Bob, where do you find deer antler? What is it supposed to do? Is this reversible in anyway? If it wasn’t for my wife and kids, I would have killed myself.
I think it is sold by Dragons Herbs. If you can’t find it let me know. I have never thought about killing myself until I took cipro. The only thing that keeps me going is my family and believing anything can be cured. I can’t do half of the stuff I used to do but I CAN still do the other half. Don’t give up.
I have been ill and discouraged to the point of asking god to just take me from this misery…..I then think of my son and how devastated he would be and I hope for recovery. Today is not easy as I am having anxiety and shortness of breath. Oh yes…..lets not forget depression and low blood sugars as they are also complimentary with being floxed. I’m struggling to keep working….I think just get through the next 24 hours…..and the next…..I haven’t tried coq 10……would this be of benefit?
Carol, shortness of breath was my worst problem (and I had some very severe olfactory nerve damage, eye damage and thirty other things.) It was so bad I was literally gasping for breath. It wasn’t my lungs. I believe (and this was echoed by researcher) that it was from mitochondrial damage to the heart muscle. I wanted “out” so badly. I didn’t think I would make it through the hour and ended up like that for months. It was terrifying. I am MUCH better now, with just some breathing problems intermittently. Definitely yes on the coq10 and anything else that helps with mitochondrial support such as resveratrol, pqq, alpha lipoic acid, NAC. You can do a bit of research on this. There are supplement,s like from KPAX that include them all BUT they contain glutamine, and Jason has posted a great deal on how that can worsen the anxiety.
Thanks Bob, i will see if its available at a health foods store or amazon. My family keeps me going but the pain at times is unbearable. And I feel like I am a burden so i often wonder if they would be better off. Pain is something that can overshadow rational thoughts and reason.
Cam- Just saw your comment. Never had quite what you’re describing, but I did experience rather painful erections when first floxed. It was quite painful! I also had a very painful numb sensation when on a bike seat for any period of time. Those have both disappeared by the way.
Thanks SM – How did they disappear? Did you try a specific regimen? Yes, i am just really scared and angry.
I was telling my wife that i want to go visit the doctor who put me on cipro and tell him thanks for ruining my life. I thought it might bring some comfort.
Carol-hang in there. I know exactly how you feel. I have often asked god to take me until it got to a point where i actually sropped believing in god. I struggle but i go on for my family. I do it because i don’t have any other choice. Leaving this world would be selfish to those of pur loved ones we leave behind.
Cam- Nothing in particular, but I had a host of concerns and that was relatively minor, believe it or not. It went away in the first 6-12 months. I don’t believe anything in particular was responsible. I think using some basic stuff like magnesium and B vitamins is probably helpful, as those can help nerves. Everyone is different and some bounce back fast and others take a while.
Hi,
I’ve probably mentioned hair loss in here in a few different posts. Sorry if I’m being redundant, I’m just upset with my hair loss and frustrated with docs looking at me like I have 3 heads when I ask if it’s connected to the meds. So I keep forgetting to ask people who did have hair loss from Levaquin or other floxie med- was it temporary? Did your hair go back to normal after a certain amount of time?? I’m eating very well & getting lots of vitamins, but wonder how long it might last. Thanks for any feedback
Hair loss can be a sign of thyroid disfunction which can result from being floxed. Have you had your thyroid levels checked?
Hi Madge,
Yes I’ve had literally had every blood panel run & thyroid is fine. Immunologist just ran extensive bloodwork on my immune system as well and nothing crazy stands out. I’ve also had all the basics checked like thyroid, iron, etc. repeatedly…that’s why I’m frustrated
Considering these are failed chemo drugs, they behave like chemo drugs, so the hair coming out is not surprising. Mine came out in chunks for a few months, but at about the one year mark it started growing back in.
I had my T3 and T4 tested and they were fine. Does this suffice for thyroid testing or should I be digging further such as thyroid antibodies or others?
Hi All,
I am new to this feed. So glad to have found it. I was floxed just 4 days ago…….So scary and unbelievable. Has anyone felt ashamed? I trusted my medical doctor for a UTI.
Dear friend … Why in the world would we feel ashamed at having been given poison? Trusting doctors is what we have been taught, and it is no reflection on those who trust if their trust is abused. Personally, I think the doctors have been abused as well … People become doctors because they want to help people, then they are shunted into a system that uses poisons, and evidence that their medicines are poison is denied and hidden. We’ve all been taken in by a pharmaceutical industry that is more interested in profits than people. I am grateful that this is coming to light.
I echo what CC said…although I am not quite as forgiving of doctors. They are not reading drug interactions or black box warnings, and just are doing what is easiest for them. That’s laziness. and for you, friend, it is INEXCUSABLE since a warning came out in June about NOT using FLQ for UTIs. Shame on whoever prescribed it.
I would like to see a bunch of lawsuits against doctors for not following the recent guidelines and warnings against fq’s. That would scare them more than anything else I believe in continuing to prescribe this drugs in so casual a fashion. All you have to do is find a lawyer who is willing to run with it. Even if you don’t win this makes a lot of trouble for them and gets their attention.
I’m with you, Bob. Sadly, in California, they makes these cases so expensive to try that most attorneys won’t take them. Something like 95% of med mal cases in CA never find a lawyer. All the laws favor the doctors and hospitals. Sucks.
I felt a lot of shame, and I wrote about it in one of the first posts I put on this site – https://floxiehope.com/2013/07/03/the-shame-of-a-pharmaceutical-induced-illness/. I took the ciprofloxacin to treat a UTI that I got from having sex, and there was some shame associated with that. I also felt shame because of what I could no longer do. It was hard. You are not alone. Hugs!
That was such a compassionate, lucid and a well written piece. I was able to relate on so many levels. Thank you, Lisa.
Mine started off as a suspected uti. Of course, it wasnt. All tests were normal. I felt ashamed in that I should have been strong enough to endure the pain and had never been to the doctor. I am ashmed that I put our (my family) collective life at risk by takingtaking this posion.
Speaking as someone who has been around more than a little while, maybe I have had a bit longer to consider this scenario, as I just have one thing to say here when it comes to us feeling ashamed or bad in ANY way in respect of not knowing about the risks associated with taking fluoroquinolones .
We are actually indoctrinated from the moment that we can understand language, & taught from a VERY young age that Drs are healers, We inadvertently put them on a pedestal subconsciously. we are told that Drs have a vocation, & that they follow an oath , an oath that we are also taught they consider 100% sacrosanct , an oath to do NO HARM EVER to their patients, to those who seek their help, or are placed in their care.
This is something that is repeated parrot fashion throughout our childhood & beyond, & this indoctrination comes from MANY sources, our parents, peers, our schools, the media & so on, & this often occurs & is reinforced daily.
In many people over time, all this will be absorbed into the subconscious, & come to the point where this DO NO HARM in regards to Drs, the trust we place in them, it in many becomes absolute, & eventually WILL attain something akin to a core belief, & thus extremely difficult to see beyond, UNLESS we happen to have something like this happen to us & we are forced to look further.
To find out we have instead of being helped to heal, that we have been instead seriously injured by a Dr of ALL people, a person we are told we can place our complete & utter trust in .. period, to find out that this is in fact NOT the case, well It changes our place in the universe, it tips our supposedly safe world in this respect completely upside down, & this often feels as we have just stepped off a cliff into oblivion, as if we have NOTHING to hold on to. I mean if we cant trust our Drs who CAN we trust ? . This is often a major reason behind why we can suffer from the symptoms of what is labelled PTSD ( a totally normal reaction of course to finding out something so horrendously shocking ) when we find out what has actually happened to us, which is then unfortunately compounded by discovering what is going on behind the scenes, the much bigger picture.
We were NOT to know, & the above is imo why we must NEVER blame ourselves for getting floxed…. EVER !!!
The buck bottom line as far as I’m concerned, that stops at Big Pharma & the FDA , & the psychopathic pond life responsible, THOSE WHO KNOW & HAVE KNOWN from the very beginning EXACTLY how dangerous the FQs are, & WHAT these drugs do to the human body & brain. Those who know all this, & allowed them onto the market to create havoc, & who as a result of this crime against humanity, now have the blood of millions on their hands.
Yes!!!!!!
I struggle with anxiety, guilt, shame, depression and not to mention the physical pain everyday. I just can’t believe that this is happening. Coming to terms is such challenge. I hope there’s light at the end of the tunnel.
Cam,
There WILL be an end to this, I promise. The human body is a magical tool and its ability to heal itself is remarkable. What kind of physical pain do you have? You WILL heal, I promise you that…never EVER give up hope.
John – not sure if you read the whole post but back in February, I was misdiagnosed with bacterial prostatitis. I actually had blockage in my colon and the pain manifested itself in the genital area. The doctor put on 20 days cipro. All tests were normal. It was deemed a week in that I had constipation. While I was on Cipro, the doctor asked me to take fleet laxative. It’s a liquid to flush out the colon in case of constipation. After taking fleet, I was on the toilet the whole night in pain from the bowel movements and all the straining. Next day I could not move, the Fleet actually resulted in severe contractions that resulted in tissue in the pelvis where the penis joins the body tearing. As a result, I have constant pain in the penis, and my penis is now lifeless and limp. I can literally put my finger at the base of my penis where it joins the pelvis and push all the way through into my pelvis until I can touch the bone in my pelvic area deep under the tissue. In a flaccid state, I hang very limp. It’s as if any rigidity I had is gone. As if layers of tissue just disappeared from the pelvis and penis. My penis is very limp and lifeless and as a man you can imagine the psychological impact of this on us. It’s embarrassing as I am not able to speak openly with anyone other than my wife. Keeping it bottled up inside has been tough.
Floxing also has many neuropsychiatric affects, including those which negatively affect our emotions due the chemical toxic assault on our poor brains ( a similar scenario as to what occurs from the psychotropics when they disturb homeostasis, cause chemical imbalance resulting in people becoming depressed , suicidal / homicidal resulting in mania etc etc . They can also cause akasthesia ( a horrendous free floating anxiety which literally makes you feel you literally want to crawl out of your skin, would do anything to get out of your body. ) They can induce Iatrogenic mood swings, these are ADRs which can be, & often are, then misdiagnosed as ‘ mental illness ‘ .
We actually have to go through a grieving process on our healing journey, grieving has many stages & at any time we can get stuck for a while in any one of them along the long road to acceptance. ( it is very hard yes, but we do eventually tend to get there ). When we are grieving we have to try to be kind to ourselves at ALL times & understand that this is actually part of of our healing & necessary.
I personally found counselling for the symptoms of what is labelled PTSD very helpful myself when I felt stuck . .
It can also help a lot if we can try to keep in mind that a lot of these emotions we feel are chemically induced & they are confusing the issue here big time . This is very often the DRUG talking it is not YOU as a person being weak, a failure etc, it is actually our brain working in the way it is meant to, It is trying to restore homeostaisis. it is actually the ONLY way the brain has of protesting, of screaming from the rooftops that it has been horrifically poisoned.
As the brain heals the neuropsychiatric symptoms , those caused by the active ingredient of the FQ will vastly improve, & in my experience eventually invariably resolve.
I eventually FELT fully recovered from my first floxing, despite being forcefed 12 years of psychotropic poison on top, & I also reached I feel around 80% healed from another floxing. A vast majority of floxies eventually will recover enough to be able to move on with our lives , the word to always keep in mind here is eventually, it can take a very long time. Some will feel completely recovered, others ( in my experience & opinion the largest group of recovered floxies ) will eventually recover enough to the point where they can move on as above, albeit with some lingering issues to varying degrees , things such as a degree of exercise intolerance, some aches & pains which were not there before they took the FQ etc , but where this CAN eventually be consigned to memory, as just another of life’s very bad experiences.
As far as the physical pain, I always try to keep in mind the following : That ‘ I ‘ am actually NOT my body, & as such these psychopaths will never touch my ‘ I’, they will NEVER flox my soul.
IT WILL GET BETTER ! .
This site is extremely informative in regards to finding ways through the minefield of emotions we suffer, it contains a lot of helpful links & tools to try to help ourselves heal from the emotional pain we suffer . I highly recommend it .
https://beyondmeds.com/?s=reframe
Thank you for the wonderful post….I am on ativan 1mg a day….I want off of it and was almost weaned until I was floxed again last February. Any ideas anyone on how I can get off this and not suffer from the horrendous anxiety?
I hope you’re right. In addition to the physical issues I also have neuropathic pain. I have no idea how to deal with it. I have two beautiful kids whom I love more than anything and my heart just cries for them. They have lost a big part of their father as a result of this.
I blame myself for getting floxed…to the end of my life.
I put in google cipropol side effects in polish, l should in
english 😦
I did not found fqwallofpain, floxiehope.com, etc…
Im computer scientists … irony. Now in fq agony.
i did not think fq drugs with toxicity profile like cancer drugs
are prescribed like candy.
I have severe delayed fq reaction. Health Detoriated. 1.5 year out
and little progress.
Hope is for sameone mild floxed (almost everyone on floxiehope.com recovery stories), only Diego is severe floxed so you see is notfull recovered now, he cant walk.
The world is brutal, corrupted, fda agency and especially emea agency in european union
consists of bureaucrats which dont care people health.
Its only fucking money!! The people health irrevelant, without importance.
If bayer or jandj will pay for registering cyanide or mercury as wonderful
antibiotics drug fda/emea accept it. Doctor idiots will cyanide to prescribe.
Now i have no respect for any medical profession.
Medical ocuppation (academic medicine) now in my opinion is the worst kind
of people, ignorants, arrogants, clown in white rag.
Amen. ……I have no faith in doctors at all at this point. I keep pushing through and hoping all will be better. And as for prescribing mercury and saying its ok…..they do that in that dental fillings we get…..I wish to find a holistic healing inpatient center that can get us well again……
Carol i have no idea mercury is used by dentists!
God help. And fda/emea accepted it!
i have tooth filled white substances using infra violet light.
Mercury maybe was used long time ago by dentists. Now its forbidden
in european union.
Carol are you in any of the Benzo withdrawal support groups ? , This link may be useful to you
https://beyondmeds.com/2012/05/31/benzoinfo-2/
Thank you….I will check it out. When I try to start to cut back, the anxiety gets bad…I am physically and mentally addicted…need to push through this. Thank you….
If we have life threatening condition or surgery there is no choice – we must to use academic medicine in hospital.
However in chronic disases like lyme, crohn etc there is a lot of internet forums.
every chronic disase has a global forum and lot of alternative cure methods. Knowledge exchange is the power.
Debs, women – please when you look after children (to raise children)
Olways talk to children – dont trust doctors in 100%, olways check drugs side effects in internet, trust your intuition, health is the most important.
I have myself been severely floxed not just once but twice , in fact in all I have been floxed 7 times Floxed from poland . The first time I was hit way back in the 1980s I actually lost 12 years of my life, when the idiots that pass for Drs decided to treat my acute toxic psychosis with psychotropic drugs which unfortunately made things a million times worse. However I did eventually reach a place where i felt completely recovered from that floxing after many years when I got myself off the dammed things. There ARE people who have been severely floxed who have eventually reached a place where they can move on, I was one of them. Unfortunately not knowing what had befallen me at that time, I was then prescribed them over & over again, before i decided to get hold of my medical records, & I finally joined the dots.
Please do not ever blame yourself, & definitely not because you are a computer scientist. We have floxed allopathic Drs, nurses, pharmacists, scientists in various fields, pharmacists & even a drug rep ( If big Pharma does NOT want something to get out, & they did NOT want this to, the FQs being VERY useful drugs to Big Pharma indeed, they are just NOT told ) as members in our various groups on Facebook, you as a floxed professional person are certainly NOT alone.
I have because of my own experiences, now done 16 years ( & ongoing ) of research in depth into every aspect of the allopathic medical system. I am very aware of the hidden raw data locked up in Big Pharms corrupted vaults the hidden adverse events from those who took part in the clinical trials, & MANY other things which are part of allopathic medical ‘ care ‘ which can potentially cause great harm, & believe me I do NOT trust ANY aspect of allopathic medicine, especially the drugs, ( I have suffered Iatrogenic injury from a few allopathic drugs , not just the FQs ) . I also have grandchildren, & believe me, when it comes to protecting my family, my grandchildren from the Pharma cartel & their various associates, I can be one very angry nanny . I talk to every member of my precious family, & when it comes to their own contact with the allopathic medical system, I keep a VERY close eye on them indeed.
Thanks Debs!
I’ve had a lyme ‘screen’ and a lyme test through Igenex labs. Any comments on how many times testing is necessary to rule it out?
Looking for recommendations on providers anyone has had success with in the metro DC area.
1. IV therapy
2. neurologist
Some of the IV therapy ‘centers’ or providers seem geared towards making money as opposed on really focusing on health or the center provides many services so it makes me weary if they are really specialists in IV therapy. Some of these places even market the therapy in a social setting.
Deanne,
ivcinfusions.com
Check this site out. They are in Philadelphia. This is where I went to get my vitamin C IV’s. They use vit C derived from organic beets.
Question – has anyone found pain relief through Ativan(lorazepam)? I find it helps with my neuropathic pain but I have never read anywhere that it’s supposed to help neuropathy. If so, how does it work?
I haven’t but I would be very careful of benzos. You might want to search online. I recall reading they are not good for floxies, and may exacerbate your side effects.
Have you tried it? Did you experience any side effects?
no, I just read about it. Several people compared benzo withdrawal to flq toxicity. I just think it will add to your problems. I was looking just now at DR Perlmutter’s site (integrative neuro) and someone posted below: “as I’m typing, the nerves in my feet and legs are screaming in agonizing pain from discontinuing benzos. I also have associated numbness.”
@ L – I am taking 1/2 the pill and I have found it does help. I don’t take it regularly but I have a demanding career so I need it to function on certain days. Today being one of them. I have an appointment at the Men’s Institute in Toronto.
They specialize in all ailments men. I am going there for answers not fore more meds. Doctors have been such a huge disappointment so I am hoping this specialized clinic provides some answers. Anyone have any advice to offer??
My very short attempt at using a benzo drug (a small dose every few days within a 2 week time period) was not good. Even that short amount if time and that little dosage took ages to get the effects out of my system. In my opinion they create more problems, but I can’t speak for everyone
Jane – what were the effects you experienced as a result of taking Benzos?
Cam, I also suggest that you research ativan or benzos in general. I took another one, klonopin for 8 months. It made me sick and the withdrawal was horrendous. They are meant to be taken for short periods and people can become addicted after only 3 weeks. I don’t mean to frighten you but to give you fair warning. There are sites llke this one for people going through benzo withdrawal.
Please make sure that you get your OWN informed consent before you let any psychotropic drug anywhere near you, these drugs are not what they seem & Drs do not know what the hell they are prescribing. I had many years of both experiencing the various detrimental effects of many of these poisons ( which also are mitochondrial toxins ) & also have been as a result of this permanently damaged by them in various ways . Having since as a result of this done many years of research into both the drugs & Psychopharma ( the Big Pharma/psychiatry corrupt collusion in which they are joined at the hip working together , & thus twice as dangerous than working alone ) I would urge anyone who is thinking of going down this particular road to do their homework IN depth beforehand, into both the drugs AND psychiatry itself including the history, & anyone already taking the psychotropic drugs to also do the same .
I would also bear in mind the fact that we generally do not metabolise these drugs well at all due to the FQs inhibitory effect on the Liver P450 enzyme pathway ( responsible for the metabolising of the majority of drugs, & some substances which enter the body . )
It is not my place to dictate as to whether someone should or should not take an allopathic drug psychotropic or otherwise , that is a very personal choice based on a persons personal circumstances , however I would urge you to make dammed sure that the choice you make is a full ( as possible, based on the amount or raw data being withheld on these particular drugs on the serious ADRs which actually occurred in the clinical trials ( think study 329 on Paxil here ) INFORMED choice .
I will NOT sugar coat the potential risks of taking these particular poisons. The whole of the so called ‘ science of psychiatry ‘ is fraud. The drugs are actually all interchangeable & work by flattening ‘ affect ‘ causing chemical imbalances in the brain which are NOT there before the person takes them. They wreck homeostasis, cause physical changes, disabling the higher cognitive processes, & they can lead to ALL sorts of problems. These can occur on starting the drug, changing the dose, taking them longer term, & withdrawal, they can also lead to permanent damage. I know so, It has happened to me & MANY others .
One good place to start in regards to researching these particular drugs is here ,
http://www.breggin.com/index.php?option=com_content&task=view&id=316
Dr Peter Breggin has actually been inside the drug companies , he has seen various internal documents on these drugs, raw data withheld from the clinical trials, & as expert witness in many lawsuits connected to them , he knows what he is talking about.
Personally, I now avoid all allopathic drugs, as much as humanely possible. My own thoughts on continuing to take allopathic drugs after floxing are the following : I have already been horrendously poisoned, & it makes absolutely NO sense to me as to why I would voluntarily want to then add FURTHER poison, resulting in further damage to my already toxic & seriously physically injured & cognitively compromised body & brain.
I personally see allopathic drugs when they ARE actually needed, for example when their is NO natural effective treatment available for the condition a person has, the situation when you have NO choice but to take them as a necessary evil at best .
For anyone looking for alternatives to the psychotropic drugs for the neuropsychiatric symptoms of floxing, for various links to information, & the many withdrawal support groups in relation to them, & much much more , I highly recommend exploring this very useful site .
https://beyondmeds.com
Many drugs cause mitochondrial damage .
https://www.sott.net/article/321987-Thanks-Big-Pharma-for-the-Mitochondrial-collateral-damage
I’m with you Debs. I am furious I took these for decades. One doctor / therapist who prescribed them was actually one of the sweetest, kindest doctors I have ever known. He had been brainwashed by his training, and said it was likely I would need to stay on them forever. I finally read a study a few years ago comparing prozac to turmeric, and turmeric came out ahead. Even though I was on a different med, I switched to turmeric. Anyone thinking of doing this needs to slowly wean off of the drug. I learned this the hard way. Took me several months to wean off but once I did, I did great…..until the Cipro. Anyhow, still taking turmeric, because it is also an anti-inflammatory and has a host of other benefits.
anyone know anything about serrapeptase???
I was taking it because I read it was supposed to help dissolve floaters. I tried it for a couple months and didn’t notice a different. What were you thinking of using it for?
I read on FQ Facebook it helped with sinus infection. I looked it up and saw it was good for inflammation, arthritis, sinus, ear, IBS and some other things. It comes from Japanese silkworm.
yeah, I have not heard anything negative about it…just didn’t work for me.
I take turmeric too. You should make turmeric milk, just take one teaspoon of turmeric and add to warm milk, stir and drink. it’s an old East Indian remedy that has been used for hundreds of years. Healing properties of turmeric are incredible.
Dr. Breggin is outside the mainstream of psychiatry, and I don’t believe psychiatry is a fraud. Antidepressants have helped me tremendously for 10 years, with no permanent side effects (unlike Cipro). I had a few mild side effects in the beginning, but they went away. Natural remedies for depression (I tried lots) weren’t strong enough for me. I agree that everyone should do their research, however, and decide what is best for them. We are all different, just like we’re different in how we respond to Cipro. What works for someone may not for another.
There have been studies though showing they are no better than placebos. Hey, I thought for decades they helped me, even though I still didn’t feel great. Like I said, turmeric worked just as well. (And I loved my psychiatrist.) I am just concerned that your poor body has already had enough abuse. You might want to take a look at this. https://chriskresser.com/the-dark-side-of-antidepressants/
I do appreciate your concern. I would rather not take antidepressants, but natural remedies weren’t strong enough and for me, depression is worse than physical illness. I read the link, and luckily haven’t had any of the side effects he describes.
Please do not confuse the ‘science of psychiatry ‘ with the symptoms, the symptoms are real, they of course exist , it is the ‘science of psychiatry ‘ that is is fraud, There is no such thing as a chemical imbalance in the brain responsible for what is ;labelled ‘ mental illness ‘ apart from that is the Iatrogenic form, the chemical imbalances caused by the psychotropic drugs .
As I always state is is not my place to try to dictate whether someone should or should not take any drug allopathic or otherwise, purely as someone who spent many years in the mainstream psychiatric system, & has ended up permanently damaged by them to warn & point out the many known proven risks, including the damage caused to cognitive faculties, higher brain function, & to major organs which happens ‘ under the radar ‘ , especially when they are taken longer term.
I too would have defended these particular drugs & the ‘ science of psychiatry to my dying breath, & did …. vehemently, I almost succeeded in dying because of them too. I also thought that psychiatry was absolutely wonderful UNTIL it was I looked deeper, when I had eventually got myself off the dammed things & I actually realised that the drugs had caused my Iatrogenic mood swings, my so called ‘ bipolar disorder ‘. That was when I realised that there was something VERY wrong indeed with the ‘ science of psychiatry ‘ & those drugs. As for Dr Peter Breggin being outside the status quo, please keep in mind that Dr Peter Breggin & psychiatrists such as Dr David Healy, Dr Kelly Brogan & various others who speak out on this particular subject WERE once part of mainstream psychiatry of course, until they realised they too had been fooled & lied to.
All I ask is to please be sure your have sure you have done YOUR homework in DEPTH on them & I mean by that, as long as the research has been done into the studies which prove the dangers ( & I meant not just an article by Dr Peter Breggin here, but those in MANY other places, including the peer reviewed studies in the journals ), and it is realised that a horrendous amount of data on the risks & harms caused by them is actually withheld, & it is understood that many people do not experience any noticeable problems until they actually try to withdraw from these drugs , & very importantly the history of this speciality has also been looked at IN DEPTH & it is kept in mind that mainstream psychiatry & its collusion with Big Pharma, the corruption involved, the withheld information as with the FQs IS the main danger here, then the decision you have made to take the drug you are taking IS a full as possible informed one. it is at the end of the day entirely your own decision based on your own personal circumstances, & although I may not agree with you it is a very wise one, I fully respect it .
http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0020392
http://www.madinamerica.com/2014/01/psychiatry-gone-astray/
Mainstream psychiatry, actually debunked the ‘ science ‘ of psychiatry , the chemical imbalance theory many years ago now, in fact it was never taken seriously by those ‘ in the know ‘ , they just neglected to to to inform our everyday Drs & us uninformed patients, ‘ follow the money ‘, as they say …
http://www.madinamerica.com/2012/01/psychiatrys-grand-confession/
I don’t agree about there being no chemical imbalance in the brain. I read the links. Mad in America is considered to be a Scientology front group, and the Plos One articles are written by Lacasse and Leo, who are Ph.Ds, not M.D.s. who are also on MiA. Nothing that Scientology posts has credibility for me, since they have a vested interest in denouncing Psychiatry, which they see as a threat to their own debunked methods of trying to heal the mentally ill. When L. Ron Hubbard’s theories were discredited by psychiatrists, he launched a full-on attack on psychiatry which is still going on today. Scientology has its own very expensive methods of trying to “cure” people and they want a monopoly on their methods.
Oh dear you have fallen for that one . Scientology has proven itself a very useful storytelling foil & cover, very useful indeed to Big Pharma, you do realise that Big Pharma/ psychiatry collusion is over the moon about being able to hide behind scientology . . that is exactly what they are counting on . I suggest researching the pharmaceutical company Eli Lilly & prozac in the 1990s, the prozac survivors group & the media training sessions for academic psychiatrists, if you really have an open mind you research without self censorship BOTH sides of a subject, & also the history .you seem to be unwilling to do this, or to look at the peer reviewed mainstream evidence, the studies so I actually cannot see us getting any further with this. I don’t wish to keep going round in circles, so will not be commenting further on this subject. The evidence is there IF you do the research deep into the literature, I have spent the last 16 years researching it .
Tomorrow is my five month anniversary of getting floxed. A little down today looking back at who I was before that fateful day when I started this poison. Does it ever get better? I don’t know. Just really depressed as I reflect back at how beautiful life used to be. Hard not to choke up. I wish there was a way I could go back to being who I was.
You will get there, Cam…I am four months out and still struggling myself. Just believe that you will get there someday because you will. This is a long-term process and it is going to take some time as you know. Just know that we are all here for you. We are all here for each other. There are many people who were way worse than us 4-5 months out. Hang in there, you will make it.
Thanks John, it definitely is the toughest thing I have had to do. It’s nice having this forum because there isn’t a whole lot of place we can turn to. We need to support each other as we are the only ones who know what we are going through.
Five months is not very long in this game- though it seems so. You must remain optimistic. Some of us have been floxed more than once but were not aware of what was causing our problems especially when the onset of many symptoms was delayed. I did get better ( not 100% ) and I tell myself that though the damage is worse this time due to being older and it accumulating I will get better again. It is almost a year since I took one capsule of Cipro and 21 months since I was given it by iv. Many floxies take a long time to recover. It is hard to be patient and even harder to deal with the cycles but you just have to keep telling yourself that you will improve.
At 5 months out you are still early out into your Floxing , this often presents with more & more symptoms popping up over a timeframe , on average i had symptoms pop up for around 18 months in my various floxings then I stabilised & subsequently jogged along for varying amounts of time before turning the corner & slowly starting to improve , this was interspersed with cycling of symptoms / flares , & the odd relapse . It is hard of course to see illness as a long term scenario we are so used to becoming unwell & getting better quite quickly, floxing is a completely different animal . if it is possible to see improvement in the longer term this it can help in the grand scheme of things . we have to be rather patient when it comes to improvement being floxed patients, but over time things WILL improve, & it WILL get better .
My life is still good, it is still beautiful it is just a little different now I live life in ‘ the slow lane ‘ . Floxing has in fact taught me a very important lesson because I had to slow down, it has actually taught me what is & what is not important in life. I realised the little things in life are actually the beautiful things, the most important things, a beautiful sunset birds singing, the sound of rain, a spider web in the sunlight with dew on, my friends, my family my pets etc.
This is something many many people rushing through life, they actually never learn until it is much too late , thats if they ever do, & for the realisation of that, I will always be grateful .
Is there a way to gauge the extent of the damage from the amount consumed? I did 500mg twice daily x 20 days. So total 2000 mg. I am vitamins and supplements orally, vitamin B12, B6, Vitamin C and E, Zinc, Magnesium, Omega 3-6-9 and Ginkgo Biloba. I also consume a glass of warm milk daily with a teaspoon of turmeric powder.
Unfortunately I believe not. in my experience of being around more than little while & also in my opinion It is a virtual crapshoot . I lost 12 years of my life from just 2 doses . I then took them again & had no noticeable reaction whatsoever, that actually happened to me not just once but twice . my most damaging floxing was when I was prescribed Cipro with an NSAID whilst using a steroid inhaler.
I do feel that If you take either steroids or NSAIDS concurrently you have a greater chance of sustaining more damage, but that’s just my own opinion.
We have people in the Facebook groups who took humungous amounts of FQs before any damage became noticeable when they were finally tipped over the edge, & other people have lost their life from one / a few doses .
In my experience & opinion it is time passing by which will eventually let you know just how much damage you have sustained, & how much you will improve / potentially feel recovered.
I eventually reached a place where I felt recovered from my first floxing without changing a thing re my diet, or using supplements ( did not know what had happened to me & I am not the only one who has done this ). I also felt around 80 % recovered from another floxing same thing . All I have ever done when I found out what really happened to me is to clean up my diet, which was good anyway .
This however was way back in the1980s / 90s, & i do think now the world is rather more toxic , I think that it is much more important now to make sure a very clean diet is followed & to avoid as many toxic things as possible in the environment & in regards to avoiding those allopathic drugs as much as humanely possible. as so many of them affect the mitochondria, along with varies other negative effects. I feel myself that this, following very clean diet & most of all time passing by are the biggest things which will make a difference.
I took NSAIDS after taking Cipro. But I don’t think that changes anything.
Although there are of course exemptions, many of us actually cannot tolerate NSAIDS at all after floxing, although they are thought of as beingn drugs by so many people they are they are actually quite nasty drugs even when used alone . Taken with FQs they are dangerous increase neurotoxicity, & can cause seizures & more, unfortunately Drs do not have a clue so ptreciv be thermal the time concurrently. In the UK where I live FQs & NSAIDS taken concurrently are classed as an A1 interaction , yet idiot Drs dish them out together like sweets . & in my experience NSAIDS can certainly set back healing if they cause us to react badly to them when taken after floxing. I still cannot tolerate them many years after my most damaging reaction, make me feel really unwell .
https://floxiehope.com/2014/10/29/why-nsaids-suck-for-floxies-and-probably-everyone-else-too/
http://www.greenmedinfo.com/blog/ibuprofen-kills-more-pain-so-what-alternatives
Cam, That’s a good question. I had 10 days of Levaquin 750 mg. last fall, then a month later had 19 days of 500 mg. (didn’t make it to the 30 days prescribed). Then five months later 10 more days of 500 mg. All that Levaquin in about a 6 month time span. I just try to gauge it by how I feel. Looking back, I wish I had connected the dots sooner because I feel my symptoms were from the exact med they kept giving me. Are the vitamins/supplements helping you?
Hi Jane, too early to tell on vitamins. Haven’t been on them long enough to make a determination. However, form what I have read, these do help. Will definitely keep you posted. My biggest challenge is being able to sleep. The anxiety wakes me up and I can’t slee afterwards.
That is so true. Living in France I was lucky to be able to indulge in a bit of fine dining in good restaurants from time to time. Now because I cannot be sure the ingredients are organic ( and here even the organic food is not totally antibiotic free- they cannot use them as a preventative but can treat ill animals up to 3 times a year!)
my choices have become much more restricted and eating out is a lot less pleasurable. But I can still enjoy a home cooked meal sitting on our balcony looking over my beloved garden. I cannot work in it all day anymore but I can work for a couple of hours a day . When I get tired I can just wander round sniffing the roses and watching our bees working away to produce honey.
I had made some comments yesterday regarding antidepressants, and then this was in my mailbox today, so I thought I would share. http://articles.mercola.com/sites/articles/archive/2016/07/14/depression-supplements-vitamins.aspx?utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20160714Z1&et_cid=DM110845&et_rid=1573198248
Thanks L, it’s a good read.
The Mercola article is very good, but I have taken all the supplements he recommends for years and they weren’t enough to help my depression; only antidepressants did the trick. I agree with some of the comments that say that Mercola may not be right about denying antidepressants’ effectiveness. For me, I very much doubt it’s placebo, because I had equal faith in the natural remedies which I tried first, yet they did not help.
Question for the group, how are your families dealing with this? They are the other silent sufferers impacted by all of this. I am often overcome with guilt when I think about the impact this has on my family.
I have been floxed for almost two years. I have continued to get worse and I can tell you to stay positive. My boyfriend soon to be fiancé is my rock my lifesaver. He cries with me we talk openly about our fears but he is always by my side. I have discovered who my real friends are and understand that not everyone can understand this due to the brainwashing everyone has towards antibiotics or pharmaceuticals in general. You can’t blame yourself. I have been that road several times. My boyfriend said this to me and I hope it helps you “I no clue how dangerous these drugs were. No one told me. So blaming myself is wasted energy. Right now all my energy needs to focus on getting better not coulda woulda shoulda.” There is no answer for when you will get better everyone is different. Stop blaming yourself and take that energy to appreciate those who stand by your side giving you love. Fight for them, yes we all need to cry and be sad but you also need to allow people to be there for you and love you with out feeling guilty.
Stephanie – I am sorry to hear that you have been suffering for two years. I hope you have a long, healthy life with your boyfriend, soon to be fiancé and soon to be husband.
I am certainly trying to stay positive but as humans, our emotions fluctuate. I have a loving wife who has been nothing but supportive but I also have an amazing 8 year old boy and a beautiful 5 year old girl. It eats me up when I can’t play with them or do things they like doing because of this ailment. The thought that I may not be around and they may end up growing up without a father is the scariest thing in the world. At times, I don’t cry and worry for myself but for them. They certainly don’t deserve any of this….I wouldn’t wish this on my worst enemy, to be honest.
I totally understand and went through something similar. I would suggest talking to a therapist. About it to help you work through the fear and sadness. All I can say is that I went through a grieving process. You will find your way. You don’t know that you are going to die I know it feels like it and I’m not discounting your feelings. It’s a process and it sucks. You will find your way through. All I can tell you is I’m having a biopsy muscle next week to look at my cells. I can’t remember a day where I don’t have pain. It is not anything I would wish on anyone but you will find your way to live through this. No one can tell you how I talk to my dog lol. You will find your way too. All I can say is there is always light you just have to find your way to it. This is coming from a person who can barely walk I have horrible spams the left side of my face droops to the left my voice has changed I have attacks multiple times a week now where I can’t move. Among other lovely symptoms from this crap. I just can’t let this shit kill my joy. I hope you find your way to live too. It sucks and it takes time but it will happen you just have to find the right path for you.
My family like me have also had some very negative experiences with idiots that pass for Drs, so they completely understand where I’m coming from we fight the idiots together I am very fortunate in this way .
I am though If i allow myself to dwell on it still very upset about the 12 years of my life I spent in ‘ Bipolarmisdiagnosisland ‘ hell on earth, no thanks to my first FQ ADR which unfortunately subsequently cost me my childrens childhood. I was not able to be there for them, & can never get this time back. I spent most of it unfortunately in hospital .
I try not to think about it to be honest, as there is no point beating myself up about it, I cant change the past & being angry upset etc especially about something I can do nothing about is quite pointless, & just compromises my immune system .
When I complain too much my family tells me to stop it and I’m glad they do.
Cam, glad you brought that up. I tend to keep alot of it to myself, which is why I am so glad to find this site. Some people don’t understand, especially those who have never had to deal with health issues or life threatening illnesses. I had bacterial meningitis, which is part of the reason I had the Levaquin in the first place- so there wasn’t much choice at that moment. I’ve had people say, “that was months ago, you’re not better?” It’s hard, any way you think about it. I spend days thinking “what if I hadn’t gotten sick”- but it does no good. Try hard to think positive and find even the smallest things to make you happy. I guess that’s the best advice I have to offer. I am always looking for new foods or ideas to try and will share when I can, hope this helps in some way
Jane – I know where you’re coming from. My sister in law told me that where she’s sitting, she sees a healthy man with both arms and legs and ability to think and see. It’s a fair point but people who have diseases don’t have the name of the disease written on their foreheads. Just because one appears normal and healthy doesn’t mean one is. My struggle is the acceptance of the fact that I can no longer do a lot of things I used to do. No sports, no gym, no running or long walks/hikes. Sometimes I find it hard to talk to people simply because they will dismiss my pain. For what it’s worth, I know exactly how you feel and I am glad you can emphathize.
I completely empathize…and yes if you can walk and talk people can’t understand. I needed a spinal tap to diagnose my meningitis, this is super painful & leaves your back sore for a while. Not that long after, I had a family member ask me to lift a garage door and they got upset when I said I couldn’t. I also used to run 3 miles a day- it’s hard to accept and even harder to convince people that you’re not just lazy and really can’t do the things you used to do. I don’t believe everyone is that inconsiderate and disconnected from what we are going through, but I’ve found the reality is that some people are. So I try not to take it personally and I find some relief when I find people I can relate to
People can not feel our pain just by looking at us and no matter what we tell them they won’t understand.
@ Stephanie – Thanks, this forum has been a huge source of support for me. I think the only people who can truly know what we are going through are the people going through the same thing. I hope you find the courage and the strength to continue to fight. I would say “god bless” but I lost my faith in god.
Cam,
Don’t give up on God. He didn’t do this to us.
It was greedy, uncaring, money hungry, people!
We live in a cursed world full of evil, sickness and death.
God and His teachings are the only thing that remains loving and good.
And remember, even if this didn’t happen, we are all destined to die, but with God we have the hope of eternal life, which 70 – 100 of the best, healthiest years down here could never compare !!!
Don’t lose your faith. It’s more valuable than your health.
There are rapists, murderers, child molestors, terrorists walking around happy and healthy with no consequences for their actions yet innocent people like us continue to suffer. That’s why I don’t believe in God.
Cam, yes that’s true…can you pull a positive out of all of it? I know for sure that my whole experience has made me stronger in the sense that I speak up for myself more…I don’t put up with anything that stresses me out and I worry way less about what people think. I put myself first when I need it and feel no guilt anymore about it. Try not to be too hard on yourself, it’s alot to deal with
Jane – it’s too early for me to be stronger. I try believe me, I try. I work hard and get up and go to work everyday. I fight through the pain, I smile at my coworkers and motor through the pain. But when I am alone, it’s when I truly reflect and realize that I am just a shell of my former self.
I am struggling badly from wondering why this has happened and why god won’t answer my prayers of just being well enough one day to drive to see my 85 year old mother……just one day of respite from this when I see so many bad people living life and not having any issues……I question this so much and sometimes get so angry…..it is a hard struggle and I also question and lose faith at times. Also, I am alone so it makes it so much harder……
Carol – I wish there was a way for me to comfort you but all I can say is sometimes bad things happen to good people. Why they do is a question I grapple with pretty much all the time. I feel the same anger, sadness, hopelessness but what choice do we have but to keep going? We just have to keep battling on in the hope that we will be all better one day. There is no other alternative. Life is precious and we only get one so just keep fighting…if no one else then do it for yourself.
Possibly we create our own trials and tribulations (and successes) here and God has nothing to do with it. There is an old saying, “the mills of the gods grind slow but exceedingly fine.” In the end no one gets away with anything.
Cam,
Question for you…are you experience nerve pain? I noticed you said you drink a glass of milk every morning. You may want to go easy on the dairy if you are having nerve issues. I have neuropathy in my leg due to cipro. I stopped consuming all processed sugars and caffeine once I realized I had neuropathy. No coffee, no chocolate (which I love)…pretty much cut out anything that can be considered a treat. One thing I remained doing, however, was having a a big bowl of non-sugary cereal every morning with whole milk. I didn’t realize until two weeks ago that only one cup of whole milk has THIRTEEN grams of sugar in it…so I was consuming probably about 25 grams of sugar a morning without realizing it. I have since cut that out and started eating boring old oatmeal every morning. I notice my leg has DRASTICALLY improved the last two weeks. Just a bit of advice. Also, have you tried probiotic and neuro-mag for anxiety/depression? Have you focused on healing your gut? Once I focused on that, I noticed my CNS issues began to clear up. Hang in there…time will heal you!
John,
Did you cut out or just decreased dairy? And caffeine and sugars exacerbate things for you? Just trying to get diet ideas, haven’t tried supplements yet or probiotics and wonder if they are worth a try..Thanks
Yes, I do have nerve pain. It’s not all the time, the intensity varies. I found some relief with Ativan. I will keep your advice in mind regarding dairy. I had no idea that diary contributes to nerve pain. I generally don’t consume whole milk, it’s skim milk. Assuming it makes a difference, skimmed is watered down milk so there’s less fat and less sugar.
Cam, you might react to the protein in milk, casein. I have an inflammatory response to casein, so I avoid milk and cheese, but can have butter and heavy cream, since they are all fat, no protein. If you want to check for a milk reaction, avoid all dairy for a couple of weeks, then have some and see how you feel the next morning. You can do further testing to see if it’s the milk sugar, lactose, or the protein.
Jane,
You don’t have to completely cut out dairy. I still put cheese on my sandwiches. I would just cut out any whole milk or anything really heavy. Sugar, caffeine, and alcohol are the main ones to avoid, though.
I would also stick to organic, since regular dairy can have antibiotics, even though I think it is no longer supposed to. (Just read about inspectors finding it.) Or, what i do, is buy goat milk cheese. It’s good and safer.
Hi Cam. I have no idea if there is or isn’t a God. No one can know for sure. So when I see posts, well-meaning as they are, attributing any minor improvement to god, I can’t help but think “then why did your god allow this to happen to begin with?” I guess what I am saying is that not all of us on this site have the same beliefs, so I wish people wouldn’t make the assumption that all of us here believe that there is a god, or “our god” is THE god, etc. I think if the belief is something that comforts someone, that’s great…I just wish assumptions would not be made that we all believe the same things in that regard. I think the strength of this site and what it offers is that we all support and encourage each other.
Hi L, you’re absolutely right. I think the idea is to support each other and if there are those who find solace in god than their prerogative. And those who don’t believe or no longer believe in ‘a’ god than that’s fine as well. I say follow whatever gives you comfort and strength to get through this time.
Joanneg:
On your hyperthyroid surgery by Dr Jim , did you have peripheral neuropathy before surgery and none after surgery? And how’s your recovery coming? Thanks Tom Marsella
I have no doubt that God is looking after me and after every single one of you even though we dont always see that. May be this is the call for us all to go back to our heavenly father and ask him to help us and have mercy on us. May be we just needed a wake up call. He is listening to our prayers and we will get out of this tribulation stronger and closer to him more than ever. God bless you all in Jesus name. Amen.
Thank you, Kim, I agree!
Peace, Kelley
Hey all, I tried posting this earlier, and it appears that it didn’t go through.
Recently I made the recommendation of using ZeroWater pitchers as a way to remove fluoride from your water source. After testing the zero water with a PH tester, I discovered that Zerowater lowers PH levels drastically making water acidic like distilled water. Long story short, acidic/distilled water will chelate a lot of nutrients in addition to toxins from your body. Not ideal for a floxie. Therefore, if you purchased one of these pitchers, I’d strongly recommend adding minerals back into your water to reduce its acidity (Like Trace Mineral Drops). It might be good to initially use a PH tester when adding minerals until you know exactly how many drops it takes to reach a neutral/alkaline PH (I think it might be better to get it slightly alkaline as opposed to neutral).
I also tested the PH in the Pure Water Freedom pitcher as well, and its level was high (8.5 with my tap water), so it may be a better pitcher for removing fluoride and maintaining nutrients. The drawback is that it takes a long time to filter water, and I don’t know its total mineral content post filtering (The good and the bad minerals remaining), so that is something one would be gambling on unless you send your filtered water to a lab for testing.
Like all supplements and treatments, be aware that changing your water quality comes with risks. No two people have the exact same physical make-up, and therefore individual needs will vary. Please do your own research before making changes to the things you ingest. As always, I hope this information helps someone.
Here’s an article on the dangers of drinking distilled water:
http://www.mercola.com/article/water/distilled_water.htm
Here’s a Link to trace minerals website:
http://www.traceminerals.com/
P.S., Like many others posting on this site, my faith in God has been my foundation through this whole nightmare. If I didn’t have that, I think the whole experience would be much worse.
I get Reverse osmosis from a water store, and I also use the trace minerals in that. Took me a year of buying bottled spring water to realize I could do this!
I’ve been looking into under counter water filter systems. Aquasana has one for $199 and Pelican has one for 350. Both are reverse osmosis with mineral pack to put minerals back in water.
I was floxed on June 11th after a surgery. Ok for a couple of days, woke up on June 14 with burning aching in knees and weak, painful leg muscles. Later got bad bursitis in the shoulders. Got permission from surgeon to stop Cipro on the 16th. Now the 15th of July, still painful but better, slowly. Looking for an antidote, told might try magnesium compounds. Any ideas?
Help I was floxed last week. Since then I have been cleansing and working with my naturopath and doing good until last night. The neuralgia and these UNBELIEVABLE SYMPTMOMS had subsided only to return with a Vengeance, especially today!! Anyone else have this before begining healing?
TIA
Kelley
So sorry to hear about your floxing and pain. If you havent, then start taking vitamin c at least 3 gms a day. Magnesium is a must and ice packs on muscles and tendons help a lot. You will experience cylcles as such. Dont worry, these will go in time, could be couple of weeks before you feel better.
Anna, can you tell me a little more about how vit. c helps? I am currently deciding supplements to start trying and just curious. And the cycles you mentioned- do you get flares in cycles? I’ve been having monthly flares- like clockwork. Bloodwork always normal of course! Thanks for any info.
I’m still trying to rule out lyme disease and it’s very confusing. I look back on my notes to see if there is a monthly cycle but haven’t been able to determine yet. Would also like to know if anyone has been in this situation. I couldn’t find the discussion or comments on topic of Lyme vs. flowing. Can anyone post a link or direct me how to find it?
Jane, i only had cns symptoms when i first got floxed. But then delayed symptoms started to appear, basically achilles tendon, thigh and hips pains. cant stand up for more than a few minutes. Pain in wrists, thumb and fingers as well. I am going into a cylce right now. Things flare up badly during these cycles and as soon as i see this coming, i start taking more vitamin C . I use powder ascorbic acid. I notice after doing this for a few days, the pains start to subside – until the next cycle. What pains do you experience during your cycles?
Sounds like my story. I’m a lot better now. But, I have room for a lot of improvement.
Thanki you, Anna! I know I need to keep hope, but i was doing so well.Thank you for the quick response and reassureance!
peace,
Kelley
Can someone suggest name of a neurologist in Toronto who treats floxies and is well informed?
I would suggest you go to Mt. Sinai hospital. They have the best neurologists. Go to the ER next time you have a flare up and ask the ER Doctor to refer you to one at Mt. Sinai. I can’t speak from cipro perspective as most doctors /neurologists don’t prescribe to the fact that cipro causes problems.
JOANNEG
Did your Peripheral Neropathy stop after Dr. Norman surgery?
Hi Tom,
I’m not sure if I even had PN
I had numbness and tingling and the feeling of heavy thick strings being dragged across my face, arms and legs, if that’s PN it comes and goes with flare ups, even before the surgery.
Here is an update
The Parathyroid surgery helped with the extreme heaviness, fatigue, bad heart palpitations(I thought I definitely would have a heart attack), and extreme stiffness where I felt like I had rigor mortis, it helped me gain back weight, my hair stopped falling out and is getting much thicker. Also, I got an injury in my stomach while on Cipro right where your liver is (I think it was my liver, but mri’s, and cat scans couldn’t find anything) and it would never heal, and it was so crippling I couldn’t lift any amount of weight whatsoever, couldn’t carry my purse!!! Anyhow, the day of the surgery it was immediately better, .but there’s still a dull ball in that area that is not right, and still think it’s my liver.
I’m 26 months out from Amoxicillan, Flagyl, Cipro, steroids, nsaids, and prilosec all taken at the same time for 2 months.
These were my symptoms and every one was SEVERE. I definitely did not think I would survive
-extreme central nervous system issues (this was the hardest thing to deal with) nothing woked right;
-extreme insomnia for about 15 months I would sleep like an hour an a half
-extreme depression, panic, nightmares crying jags
-wrenching stomach pain
-extreme head pressure
-extreme hot flashes
-vision changes- blurry and I lost my peripheral vision(came back about 15 mos. out)
-SEVERE DIZZINESS like I’m continuously drunk with terrible balance, floors feel like they’re moving, I felt like I was walking under water or in another world or totally stoned!
-brain constantly shaking and racing out of control
-tmj
-stabbing tooth pain in many teeth
-my body couldn’t handle the summer heat or cold winter temperatures
-numbness in face, arms and legs and my skull was extremely numb and tingly
-dry eyes and mouth
-urinary issues- going way too much then not enough feeling like I had a uti
-tinitus
-hyper smell, sound, and vision like over-stimulation with everything
-extreme chemical sensitivities ( smells and supplements)
-extreme brain fog and forgetfulness – couldn’t follow conversations, forgetting words, my kids names my address, a couple times I couldn’t remember how to get out the car. I had to really think about it
-extreme hair loss-my scalp constantly tingled and itched
-deep vertical ridges on all my finger nails
-extreme hyper feeling then I would get extreme fatigue and stiffness
-joint popping,crunching, cracking and stiffness over-stimulated muscles (to touch)
-developed high calcium within the first 3 months which eventually(22 months later) I had to have the parathyroid surgery to remove a kidney bean-size tumor attached to one of the four parathyroid glands
I had so many things wrong with me I can’t remember them all.
The only thing that I never had was the burning sensations that I read others had, but I think everything else i read about I’ve had.
The one thing that I do have that I never heard mentioned is, since being floxed when I have blood work drawn the pain is extremely ridiculous, almost unbearable. And it’s not just where the needle goes in, it’s my whole arm, and it lasts for hours afterward. I don’t have any idea why??
If anybody else has this please let me know.
26 months and one parathyroid surgery later, I still have:
-shaky brain, but waaay better, not always there just when flared up
-Joint issues, but waaay better, not always there if I take magnesium
-Stomach issues, but waaay better, not always there just when flared up
-blurry vision, always but worse when flared up.
So, I still have some issues, but my life is so much better than the first 18-22 months. These symptoms are bearable. I can laugh,LIVE, be happy, play with my kids and my grandson, not constantly wondering if I’m gonna crash and burn today!
These are the supplements and things I know for sure helped me and that I still do every day:
-MAGNESIUM : In the beginning when my cns and my brain was spinning out of control the only relief was magnesium especially a strong magnesium bath (Chloride or Epsom salt) Now I take 140 mgs of magnesium chloride every four hours while awake (about 700 mgs)
-PROBIOTICS: one that helps the most is VSL#3 but I switch up with all different kinds
-COLOSTRUM: I take 1 tbsp. in 8 oz. of water twice a day (as soon as I get up and right before bed on an empty stomach)
-Green drinks and Berry drinks
-Also, I drink bottled spring water and “try” to eat mostly organic (I don’t do this very well)
Hope this can bring some HOPE for those of you still in the worst of the suffering and wondering” WILL THIS EVER END??”
JoanneG, would you like me to post this as a preliminary recovery story? I know that a lot of people have been following your progress, and it may be good to have this (and maybe some of your other posts) up as a story for people to reference. I know that you don’t feel well enough to have a recovery story quite yet, but you have come so far, that I think that a partial recovery story is appropriate – if you want. Please let me know.
Regards,
Lisa
Hi Lisa,
I would love for you to put my story in the recoveries, because I do believe it can bring a lot of hope to people who are totally devastated and feel there is no way to recover from the system-wide devastation of these horrific drugs.
And to encourage them and let them know there is HOPE!!!
Joanneg, your flox journey gives me so much hope. Thanks! Just wanted to ask you did yr dizziness go away? If so, what do you think helped get rid of it? This is always my scariest symptom. I get extreme anxiety when it happens.
joanneg – your story is inedible! I am so glad that you are getting well. It certainly gives the rest of us real hope!! I am curious, did you happen to take anything for your insomnia?? I am only getting 1-2 hours of sleep…if that. I can’t function at all with that much lack of sleep…and it also makes my anxiety/ heart go crazy!! I just started Zolpidem for my insomnia, but I don’t want to rely on sleep meds and I don’t want any withdrawals, either (even though it’s a non-benzo). So, I am curious as to what you did to help with the insomnia? And the GI issues, if you please? Thank you so much and many good thoughts sent your way!! -Andrew K.
Andrew—I also took zopidem. I didn’t want to be on another drug, but I too was getting ZERO sleep. (Plus I was having horrible breathing problems, and taking the zolpidem was my only “out” for months.) Even WITH the zolpidem I got very little sleep, but without it–none. What I did was, I stayed on it for several months, and then I “weaned” myself off. I don’t know if it is necessary, but I thought it might help trick my body into sleeping. I went from 1 pill to 1/2 for a couple weeks, then 1/4 for a couple weeks and then I stopped. It worked.
Thank you L, I appreciate that info. The symptoms are crazy…and the insomnia just came out of nowhere! I have a first appointment with a homeopathy specialist tomorrow here in MA, in the Boston area. *Fingers crossed* Always good thoughts for you and everyone here!! We’ll all get through this!
Thanks JOANNEG
QUESTION: Has anyone floxed had the doctor think it is PARKINSON’S ??
Hey Joanneg,
Thank you for the update and the encouragement for those of us who also took a FQ drug with a corticosteroid. I pray that you continue to heal and that we all see your recovery story on this site very soon.
Just curious, what brand of bottled spring water do you consume?
Regarding your blood draw inquiry, I wonder if the pain you feel is a result of the chemical(s) used to sterilize the needle or to clean the draw site. If you haven’t already, it might be worth asking the blood draw station what they use and then see if another lab uses something different.
Take care,
Ryan
Hi Ryan L,
I can’t wait to one day post my recovery story!!!
And now after more than 2 years I finally feel that recovery is not only possible, but right around the corner. I’ve been having long periods of practically no symptoms. But every time I try to detox with different supplements it flares me up.
For example, I went from May 20 something till July 10th with no symptoms until I decided to take SAM-e.The package says it takes 7-14 days to start working. Well about the 6th day I started to get flared up. So I don’t think I’m going to do detox supplements any more.
As for the bottled spring water, I use Nestle Pure Life.
I don’t really know how good or bad it is. I just looked up the best bottled spring water, and Dr. Mercola’s site suggested it. Plus I can smell more chlorine in all the others I tried.
And thank you for the suggestion for when I get blood drawn. I never thought of that.
Hi everyone,been a while,hope you’re all doing well.
Can’t believe I wrote that(stupid.) Few of us are doing well!
But you all know what I mean.Joanneg,I just had to respond to
your post,because I have also been on Sam-e for about a week now and
I’m going through a bit of a flare-up myself.My problem is I always start taking different supplements at the same time, so I never know for sure which one is the culprit.
Have you ever read the box that these pills come in? So much garbage.Why does everything have to have magnesium stearate!? Plus this past month I’ve done a few no-no’s out of desperation to help my foot issues.I’ve taken Mobic,Celebrex,Aspin,ibuprofen,and had a cortisone shot in my foot.None of it helped.Tomorrow I’m going to try Extracorporeal shockwave therapy.Anyone heard
of this? It is supposed to work really well at healing tendons and also help with nerve pain.
Hey Frank,
If you are one of the lucky ones who can take NSAIDS post floxing without major problems, you might consider looking into prolozone shots for your tendon pain.
“Prolozone is an oxygen and ozone, vitamin, mineral and homeopathic medicine injection technique developed and pioneered by Dr. Frank Shallenberger. It is excellent for all forms of musculoskeletal and joint pain including chronic neck and back pain, rotator cuff injuries, degenerative and arthritic knees, degenerated discs, and shoulder and elbow pain. Prolozone seems to actually correct the pathology of the disorder, and according to Dr. Shallenberger there is a 75% chance for the chronic pain sufferer to becoming permanently pain free.
Prolozone is derived from the Latin word “proli” which means to regenerate or rebuild, and the word ozone. Ozone is the most highly active form of oxygen that appears to powerfully promote the repair and regeneration of damaged tissues, joints, ligaments, and tendons. This usually initiates healing and a permanent end to pain. Prolozone can provide a curative result assuming that any other contributing factors such as infection, misaligned gait, movement deficits, nutrient deficiencies, etc. are successfully managed.”
The major concern of prolozone shots for floxies is the prep injection (Local Anesthetic) before the prolozone injection. There’s also the possibility of having a negative response to the Ozone in prolozone.
Let us know how the ESWT treatment goes.
Has anyone heard of someone using a steroid with Augmentin and having floxed symptoms? I did this for two days then stopped. A few days later the neuropathy started. I took the antibiotics again the following week for two days.
Four days later, I took Levaquin with steroids for a confirmed CT scan sphenoid sinus infection. Because I had stopped and started Augmentin, my doctor prescribed the Levaquin with steroids. Took it for 6 days and then the extreme fatigue set in.
So tomorrow I am getting a muscle biopsy it takes 8-12weeks for the results. I am having more episodes where I can’t move at all. I am trying to get disability so I can restart going to get IVs this is the only way. Please think good thoughts for me I have to be knocked out they promised no florouquinolines will be used I’m still scared because of my breathing issues and spasms. I have to be totally under because of how out of control my spams have become. I have longer time periods where I can’t talk all of this happened after this crap was given to me. Fingers crossed for tomorrow I will let everyone know what the biopsy says been waiting for months for this.
All the best Stephanie. Everything will be just fine. Hugsxx
Thank you xoxo
Hang in there Stephanie….thoughts and prayers are with you. HUGS!
Thank you hugs back I know it’s nothing big but to be knocked out and given drugs is scary.
Hey Steph, crossing fingers, toes (the ones I can feel) arms, legs and everything else. Tell them to mark results ASAP! I’ll be thinking about you and holding good thoughts. xoxoxoxo
Thank you so much xoxoxoxo. I’m pretty weak today can’t even go on the computer just my phone. I just need this to be done to get the proof everyone needs. Thank you so much!!! I will probably be out of it tomorrow but will let you know how I am by Wednesday. They promised no florouquinolines. They promised.
Yes, please update me when you are back to normal. (well, you know, as normal as can be expected.)
Will do Mike is taking me and he promised to be the last person I see when they knock me out. I sound silly I’m just so scared to have anyone knock me out. I know I won’t be able to sleep tonight. But knowing he is going to hold my hand makes it better. No one else understands the lack of trust this whole thing causes. Everyone else but Mike are like oh it’s just a simple biopsy but Mike said I know I get it and he promised to be there when they knock me out and wake me up. I just need the proof. I feel like they know it will be positive they all said once the results are in they can do more. It’s insane.
The biopsy is done!!! Yay I just have to wait 8-12 weeks for the results. So I must say the anesthesiologist was amazing!!!! He came in to chat with me before and during the chat I had a bad attack he said that to protect me from having a super bad reaction that I was not given anesthesia I was given a sedition only and they all put a special bracelet on me to ensure no florouquinolines would be given to me if anything went wrong. When I was in recovery I had really bad spasms and scared the shit out of the nurses. I kept telling them this is my life and this is why I’m here. They got an education on the side effects of these drugs. They had to wrap my head for a bit because I was spasming so much. Then they finally let Mike back he was very concerned and he just held me till I was released. So I’m okay it seems to have released more of everything which I expected. But I can’t wait for the results. I will let everyone know what it says.
Anna,
My symptons first started when I was taking Levaquin in the hospital for meningitis. I attributed the pains to my illness, but the exact same pains persisted long after the infection was cleared. Every month I have a week long episode of severe flu like body aches and whole body weakness that so bad I can’t stand for more than a few minutes. It gradually lets up and I feel semi normal for a few weeks- then it hits again. Can’t figure out any triggers or anything that helps. I just ride it out and hope it will fade eventually
I feel I have made great improvement taking Eissac Tea to cleanse my body since I was floxied. :/. It is gentle and you really don’tsee any marked difference in your body except the ability of elimination several times a day (which is highly recommended). I gave Eissac to my son when he was young and we discovered he was very toxic (mercury poisoning from ground water). His hair color actually changed to a lighter shade during the several months he took it! And so much improvement was seen in him!
I also see my ND at least 2-3 days per week and take many supplements and homeopathic remedies, cut out gluten and casin(all dairy).
You can read more about Eissac tea(and purchase if you’re interested) at
http://www.herbalhealer.com/essiac.html
God’s Blessings on all of you,
Kelley
Hopefully this gives some hope! Hugs!
Thanks my dear for the link and so happy you found something that is helping you. Wishing you a full recovery. Hugsxx
Just wanted to let you guys know. I’m about 18 months out and I went and rode some real mountain bike trails for the first time since Cipro.
The trails were fairly challenging, especially the climbs which are full of roots and rocks.
I found I still had the same finesse I always had on the trails (sorry to boast, but it’s true 🙂 ) and was pleasantly surprised at my stamina.
Also every time there was a fork in the trail that said “Easy” one way and “Hard” the other I took “Hard” and still nearly “cleaned” the whole trail, only putting my foot down once.
I rode for amout 30 min, which I consider good for a first time.
So it was a good day.
For all of you floxed people who used to be into sports, there is hope that you can get back to the activities you love.
Yea!!!! Boast away! Glad you had a good day
Great news. I rode a bike for the second time since being floxed 3 years ago. It was only a few miles on mostly flat ground but it was great. I still have bad neuropathy and it gets worse when I exercise like that it was good to get out,
Does anyone know from experience which meds are alternatives for Cipro if suffering from UTI? I know Cipro is the goto med for that and wonder what else can be given instead…
Jane, i am also trying to find out what triggers a relapse. One of the scary symptoms was the dizziness or floating / no balance sensation. That went away for a month only to come back again. I feel it right away as soon as i get out of bed. Hope it will not get worse. Didn’t have aches/ pains until the 5th month post floxing. Vitamin C helps heal the tendons until the next cycle. Magnesium helps as well. As for the uti antibiotics, there is macrobid, bactrim and amoxocillin which is safest one of all. But if you can drink one or two cartons of pure cranberry juice daily for a few days, it should clear the infection without any side effects other than having more trips to the bathroom.
I got rid of my UTI with a protocol from my ND. Can’t recall the exact amounts but included high doses of C, A, Herb Pharm urinary system support, and then d-mannose to help shed the little critters from the vaginal wall. If you go to and ND, esp a female, they should know the protocol.
Does anyone have knee pain? ? I had it last year,,it went away but now its back again:(
Yes in spades!!! My right knee has been very painful on and off for several months now. At it’s worst it comes in waves of stabbing and burning at the same time. I am a keen gardener so kneeling is not helping it. At the moment it is improving a little but the pain in my ribcage and neck has got worse. It seems to be typical of this poisoning that one pain recedes to be replaced by another in a different part of the body!
I had popping and zapping (like electrical jolts) in my knee starting over a year ago, whithin a couple weeks of the Cipro. Then a couple weeks when I got out of bed, I couldn’t support the weight on that leg. Had an MRI—torn meniscus.
There are multiple options. Try macrobid first and see if that helps.
the good news—macrobid targets uti bacteria…the bad news—it’s nasty in its own right. I would really try the non-pharma approach first. Here’s one of a number of sites reviewing it. http://www.everydayhealth.com/drugs/macrobid/reviews
After being floxed, in desperation, I took Macrobid for a UTI and did not have any bad reactions. Good luck. Hope you feel better soon.
MACROBID i actually call the FQs chemical friend, it has a SERIOUS toxic profile , it shares some of the same ADRs as the FQs & also carries the risk of causing many other serious potential ADRs including the risk of causing irreversible peripheral neuropathy, the ADRs as with the FQs can also be delayed, please do your homework in depth on that particular antibiotic, we have had n more than a few people also damaged by that one .
Along with BACTRIM ( the use of which was severely restricted in the UK MANY years ago now due to the serious damage it was causing ) Macrobid is imo best avoided, IF there are other alternatives available, & IF one is actually needed. IF one is needed, there are in fact MANY other antibiotics available to potentially treat UTIs depending of course on the bacterial strain involved .
We are of course all different insofar as what we can or cannot tolerate , but the way I see it is the following : Why on earth would anyone want to take the risk of taking an antibiotic which carries the potential to cause so much damage / serious irreversible injury, if they also have the choice of another antibiotic with a more ‘ benign ‘ toxic profile ( the penicillins Cephlasporins & Doxycycline fall into this category ) available which can do the same job. ( Allergies apart ) these are the antibiotics which in general are better tolerated by everyone.
In relation to the above ,PLEASE make sure that ANY suspected UTI is cultured, this is SO important , as after floxing we can actually develop several conditions which mimic UTIs . i.e. ( IC ) interstitial cystitis , neurological issues related to bladder function ( neurogenic bladder etc ), & also something which is best described as Diabetes insipidus, ( this is not your usual diabetes ). ALL of these can mimic UTIs very accurately indeed, we can even have blood in the urine & white cells present at times but on culture we have NO infection present .
Anyone who wants to see patients experiences of taking macrobid & the damage this one can potentially cause, I recommend checking out the following link
note the rating for this drug , then compare this with the FQs , also please feel free to leave your own comments on these poisons .
http://www.askapatient.com/viewrating.asp?drug=20064&name=MACROBID
Here is the background story to BACTRIM in relation to the UK, & here you can also various stories of peoples experiences of taking this antibiotic along with the many other names it is also known by . Unfortunately, the potential risks posed by this one have NOT got out to the rest of the world .
http://briandeer.com/bactrim-septra.htm
BACTRIM ,
More stories of patients experiences of taking this one .
http://www.askapatient.com/viewrating.asp?drug=17377&name=BACTRIM
There are MANY alternative antibiotics available for treating UTIs IF one is needed, depending on the bacterial strain involved, as you can see here .
https://www.drugs.com/condition/urinary-tract-infection.html
Here is a good link for alternatives to antibiotics for potentially treating UTIs, ( the comments are very good too ) I would personally try to go the natural route for a UTI first whilst ALWAYS keeping a close eye on symptoms, at least until the culture comes back when I could then see which bacteria strain I am dealing with. IF the symptoms have not by then resolved, I would then potentially consider my antibiotic options . It is very important to always keep a close eye on the symptoms of UTIs, as UTIs can turn into a into a kidney infection, & at times they can do this quite quickly & also sneakily.
https://chriskresser.com/treat-and-prevent-utis-without-drugs/
This may be a question that Lisa can answer best, but are there any floxies who’ve done a FMT (Fecal Matter Transplant) as part of their FQ recovery? I’ve read numerous posts in the past on this site about how FQ wipe out good and bad bacteria, and that some types (O Formigenes) cannot be supplemented at the moment. So if one of these non supplemental bacteria’s is completely wiped out by the FQ, it would seem that a FMT is currently the only way to get them back in your system. I think the medical criteria for having a FMT is that you must have had (or currently have) a C-diff bacterial infection, but I could be wrong.
Hi all! Especially Lisa!! First off, I want to say a huge thank you for this site. It calms me to know that I am not alone and that a lot of people do recover. However, I know you are probably sick of the stories, but I have to put mine in here and ask if you’ve had the same symptoms…here it goes. I was a healthy, 31 year old male who was prescribed Cipro for an acute epididymitis. I took one dose on the morning of 6/2/16. It went okay (or so I thought) just some cracking of the joints but nothing else…I thought I was okay. Then, I took my second at night time after dinner…and omg it hit me like a train. Sudden rush of severe anxiety sweats and it felt like I had the flu. I couldn’t walk for a few days because my joints hurt so bad.
But, the real scary side effects started a couple of weeks ago, around 7/8/16. This includes: insomnia, GI issues (pain, bloating, constipated feeling), loss of appetite & weight (and I was never a big guy, always around 135 pounds so any weight loss is scary…I’m now down to 124..eek!), joint pain, brain fog (with flashes at night that help keep me up), leg/arm twitches while trying to sleep, dry mouth (with bitter taste & bad breath…I’m worried it might cause dental problems in the future), and of course the horrible anxiety with the rapid heartbeat…almost every time I move, the heart freaks out to over 100 bpm!! I don’t want heart issues! 😦
I am freaked out because I have never had an issue sleeping..I LOVE sleeping and could always sleep in til 2pm if I wanted. Now I am lucky if I sleep 2 hours (without meds). There have been nights I haven’t slept AT ALL (awful feeling & really triggers the anxiety). My primary care prescribed Zolpidem, which is helping, but I don’t want to rely on sleep meds for the rest of my life. Does the insomnia go away??? The insomnia and GI issues and my most concern. Do most of, if not all the side effects go away after the 4-6 months? Thanks!!
-Andrew K.
Hi there, Andrew. Yes, you are definitely not alone. I experience everything you listed and about a dozen other side effects. The timeline is different for everyone, but what will help you get there faster is avoiding gluten, gmos, fluoride; taking probiotics and magnesium—the gut issues are connected to SO much of it. I am a year and 5 months out and still dealing with a half dozen side effects, but LIGHTYEARS from where I was at my worst. (I too had a sudden weight drop—32 pounds I was 140-something to start with.) The insomnia is mostly gone, just ocassional now, and the GI issues, which were REALLY bad are about 90% improved. Still have anxiety but not as horrific as it was. Sleep will come back—I promise.
Thank you so much for your reply, L! I am happy to hear that you’re doing much better! And I hope that all of your side effects will ease up (and hopefully disappear) soon!! I hate to pester you on it, but did you happen to take anything for the insomnia? I have been taking Zolpidem (the generic to Ambien) which is a non-benzo…or did you force yourself through it? Because the lack of sleep really makes my anxiety and my heart go crazy!! And I’m also wondering if I should stop the sleep med. (I don’t want to rely on it). I have tried chamomile and melatonin and Valerian root..and they do nothing for me.
Also, you say to avoid fluoride? You mean even brushing your teeth and doing a fluoride rinse will cause a relapse? Because most toothpastes have fluoride in them…my drinking water in my town has fluoride in it (a tiny amount but it’s there). And I do a fluoride rinse every once in a while. What would be a safe alternative? Just because I don’t want any dental problems on top of this…yikes! Thank you so much!! 🙂
It is a myth that fluoride is necessary for dental health. Toothpaste without is available from health food shops and online. Fluoride is poison . Even for non floxies it helps damage the thyroid.
Fluoride is actually a cumulative general protoplasmic poison, one of the most toxic substances known to man, & the fluoride issue is actually one of the biggest frauds ongoing.. Fluoride is actually much more harmful to teeth than any slight benefit which may be found, even that is negligible & only found in children when used topically ( as toothpaste ) for the milk teeth, & even that supposed benefit is highly suspect & debatable. When the harms that fluoride can cause to the body & brain are taken into consideration with the above, there is no argument at all fluoride has no benefit , & should be avoided by every living creature on this earth, it is VERY bad news .
You can find out about this particular deception, & also the many health issues connected to fluoride ( under health effects ) here Andrew .
http://fluoridealert.org
Thank you so much for the info Madge & Debs!! Every little bit helps a bunch!
Fluoride should be avoided. I keep distilled water by my bathroom to rinse when I brush, There are a number of fluoride free toothpastes, like Toms of Maine, which you can get at most Target stores, or there are other s at health food stores. I would not do the fluoride rinse. Fluoride is a toxin and not only has NOT been shown to help teeth, but can actually make them worse. Long story, but all a trumped up cherry picked study by the aluminum industry to get the govt to let them get rid of their waste products from manufacturing. Most countries have done away with fluoride in the water. I don’t drink tea anymore unless it is frm another country—too much fluoride in the leaves. I buy wine that is from another country that doesn’t fluoridate. I try to avoid it at all costs. I still shower with it, but warm, not hot and very brief. I would get a filter for that if I could.
Thank you so much for that valuable info, L. I will definitely be staying away from fluoride from now on. I actually did purchase Tom’s of Maine toothpaste and omg what a difference! Feels fresh and no burning!!
Also a quick update: I saw a homeopathic specialist in my area a couple of days ago and she is convinced that she can reverse most of the symptoms. I told her it’s been since 6/2/16 and she stated she has treated a number of patients with Cipro poisoning with much worse symptoms and for a much longer time…with positive results. I even brought up “Homeocipro” and she says she can make it for me. I just don’t know if I do want to go down that road right now…I hate to think of putting that poison back in my body (even if it’s “safe” as she states it is).
Right now, she has started me on a gluten free diet for at least a month, that’s when my follow-up is…as well as epsom salt baths and taking supplements (i.e. magnesium and this god awful stuff called Vital Clear from Vital Nutrients. I couldn’t finish a glass of it using just water…it was too dense and chalky/chunky…made me gag. But it’s loaded with all the vitamins necessary for the reversal/recovery process…we shall see! I am keeping positive! 🙂 Best wishes and thoughts to everyone!
Great! And not ALL of Toms of Maine are fluoride free—so double check. Yeah, I would be leary of homeocipro. Really not sure about that. But the gluten free is excellent advice (and GMO free)
Sorry to ask again but I have a doctor appointment tomorrow and would like to bring the proper literature that I have seen posted to share with our doctors. Could someone post that link again?
Deanne, i dont have the link, but i am only wanting to comment on how ironic it is now that we -patients- have to educate the doctors. How can we possibley trust a doctor when we know we are more educated about the illness than him/her! It drains my energy so much when i feel i am responsible for educating an MD. I guess we have no choice. good luck to you and i hope you will get the help you need at this stage.
you can find the dear doctor letter in the resources tab
Just saw a commercial for another pain treatment (Quell). The website says that it is “100% drug free, for widespread relief of chronic pain” and that it is “designed for people with back pain, arthritic pain, nerve pain, leg and foot pain and more.” This might be good product for nerve and muscle pain. However, I’d be concerned about someone using it to mask tendon pain. If someone decides to try this, please let us know how it works for you.
Here’s a link to their website:
http://getquell.com/
Looks interesting. Hope it does what it says, so billions of people could get drug free help.
Ok, has anyone gotten tennis elbow after their floxing?
Unfortunately tendon/ligament pain is very common with a FQ reaction. Mine was the worst during the first 2-3 months, but has slowly improved in some areas (Mostly in arms and feet). The things people seem to think help the most for these types of pain are magnesium, Biosil, Bone Broth, Vitamin E (oral/topical, but make sure it’s not synthetic…I use Solgar capsules). There are probably other treatments I’m forgetting, but these are the ones that come to mind. As always, be careful with any dietary/supplemental changes you make. You may also want to read Daniel L and Brett’s story for other ideas. I think they both had tendon/ligament pain. Hope this helps.