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Deana
10 years ago
Thank u Mark…..I do eat some chicken (not fried)….been avoiding all fried/greasy foods…..cant eat anything I used to eat and its really got me depressed. I will add more veggies. I havent eaten eggs cause Im not sure if those are acidic. Ive been trying to eat smaller meals throughout the day but I still experience the reflux just about everyday. Sometimes its seems my stomach isnt empyting like it should so Ive been avoiding breads lately.
Deana
10 years ago
Thank u Lisa….I will mention this to the Gastro dr when I see him to have the scope done. Im only using the carafate and the Zantac when I really need it but usually at nite I have to use the Maalox but Im only doing one spoonful…..sometimes twice a day if I really need to. I needed the carafate becuz the lower part of my throat has been hurting for awhile and it was slowly getting worse. I never knew acid reflux could be so miserable!
Would u happen to have any advice about dental things?? Im getting a cleaning tomorrow and will either be getting a tooth crowned or pulled.
I lose track of all the therapies that people have tried. Sorry! Can anyone tell me anything about PEMF (pulsed electromagnetic field) therapy? Good/Bad/Whatever info is welcome. Thanks!
SM
10 years ago
Hi, Lisa. I’m hoping you or anyone else has some insight. I recently are out (which is a first in a long time, other than Chipotle), and I seem to be reacting to something. I’ve spoken to the restaurant and they have us a full and complete list of everything in the meal. It was wild fish and seafood (nothing farmed). But there was some butter (nonorganic I assume) and rice that was cooked in chicken stock (nonorganic I assume).
This is the most risky meal I’ve eaten in ten months. I have not eaten any meat or dairy product that isn’t organic for almost a year now. But my wife and I thought there was no way I’d react to butter or chicken broth. Looking back, I don’t know what I was thinking!
But even now, as I think and research, there’s a few thoughts. One, I thought that you (Lisa) had returned to the world of conventional meats and dairy. I assume some others have too. I also know that the Flox Report says that other than severe cases and those who had an immediate/allergic reaction, no significant dietary change was necessary. In other words, people wouldn’t react to conventional foods. And lastly, my own research say that fluoroquinolones are illegal to use in poultry, so presumably the rice cooked in broth would be FQ free. And also dairy cows are also not fed FQs. Beef cows, yes. Dairy cows, no. They are given other antibiotics but not FQs.
So, what on earth am I reacting to? The FB group answered that question in a variety of way but MSG seems to be a prevailing theory. Apparently it can cause some nervous system issues which I’m certainly having. And it’s clear that other floxies have reacted to it as well. The broth, by the way , most certainly had MSG. and since I’ve been all natural and whole food oriented for a year now, I wouldn’t have been exposed to it at home.
Has anyone tried the GAPS diet (see the book Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride) as people are using the protocol to heal themselves of a variety of illnesses. The aim is to heal the intestinal lining and repopulate the intestines with the full gamut of beneficial bacteria, thereby restoring health.
Brandon
10 years ago
Hi All
I went to a concert two days ago and the next day had nausea and a spike in my tendon issues in my forearms. I also have little pink rashes on my forearms. I am wondering if this could be from being out in the sun. The concert wasn’t until 5pm so the sun was not particularly strong, but am trying to account for the issue. Has anyone else had similar problems? Could the sun be the culprit?
Brandon
Kate
10 years ago
Hi Everyone,
Thank you Lisa so much for this site! This has been a terrifying experience and being able to share stories of hope is so reassuring.
My Cipro Story:
2/15/13-Prescribed Amoxicillin for an ear infection
3/4/13-Another ear infection, prescribed Cipro (Thankfully only took 2 500 mg pills out of the 7 day prescription)
At the time I was a runner and had been training for the tough mudder. I began getting shin splints and plantar fasciitis. Kept training until one day I ran through the shin pain and could not lift my feet. That pain continued for 4 months until I got custom inserts. I had to wear the inserts constantly or the pain would return. I remember going to the doctor and saying, “It hurts to lift my foot” and them telling me that doesn’t make sense, when it was really tendinitis the whole time.
Other symptoms that I did not connect:
-Swollen glands behind ears
-Thumb sore when texting
-Pain on top of foot like my shoelaces were too tight
11/7/13-Not feeling well, stupidly took leftover antibiotics, CIPRO!!!! (Once again took 2 500 mg pills) Right after I thought I better google this to see what it is for and was horrified about what I found!!!! Then I stupidly took Aleve the next day and had a fever and chills for 3 days. There is not a day in my life that I will not regret taking a leftover antibiotic or taking it in the first place last March without first seeing what it was. I never ever would have thought an antibiotic could do this. Also went back to the primary care doctor and told him and he said, “Cipro wouldn’t cause shin splints. It’s just the Achilles.”
Over the next few months I had minor pains here and there, plantar fasciitis, shins, IT band, but nothing major. I thought I was in the clear. I was taking Omega-3, glucosamine chondroitin, Vitamin C and B 12, and magnesium. I was doing spin class, elliptical, low impact aerobics, went dancing with my custom inserts, but still no running. I even went snowboarding!
March 2014-Noticed lump on the arch of my foot. Googled and saw it could be a plantar fibroma which can be caused by glucosmine chondroitin or excess Vitamin C. Around that same time the balls of my feet started burning. When I stood it felt like I was standing on marbles and burned. Went to two podiatrists, one said it was my metatarsals rubbing, one said Morton’s neuromas. Both confirmed I did not have a plantar fibroma, but I stopped taking the supplements just in case. (Did anyone else experience a lump in palm or foot after taking those supplements?) The podiatrist took my full length athletic inserts to adjust for my foot bones and left me with my 3/4 length inserts.
April 2014-Had gum surgery, lots of Novocaine, prescribed Amoxicillin, and Tylenol with Codeine. The burning pain went away and I was feeling pretty good so I decided to run around my backyard for a few minutes as a “test run with my 3/4 insoles.” While running I felt this pain in my ankle, but it wasn’t my shin so I thought it was ok. Two days later I tried the treadmill for 2 minutes and then I got an excruciating pain in my calf right next to my shin bone which I thought was a different kind of shin splints. The pain in my posterior tibial muscle and tendon was so bad that I could not walk or stand for weeks.I thought it was just shin splints again, but now looking back realize that the meds for my gum surgery probably triggered the reaction while running or maybe the damage was brewing the whole time? Also, two days before running was my 31st birthday, drank a bit too much and took Aleve the next morning.
June 2014-I went to a foot and ankle specialist and was told “posterior tibial tendinitis.” I went to a physical therapist and was told “Achilles tendinitis in both ankles.” Was prescribed NAISDs for pain, which I took for a few weeks. After an ankle brace for weeks with no improvement and awful pain especially at night in both ankles I was put in a cast for 3 weeks. They did MRIs and they didn’t show anything except minor swelling and fatty tissue in my posterior tibial tendon. At this point I was still thinking it was just my stupidity for trying to run in 3/4 insoles and didn’t make the connection back to the Cipro as I had taken it months ago!
July 2014-Started getting pins and needles and numbness in hands and arms. Burning pain in soles of feet again. Leg muscles started twitching. Twitching spread to other parts of the body randomly. Twitching is especially bad at night. I’ve started Physical Therapy for my ankles and the Physical Therapist said there’s definitely something wrong as I have tendinosis in the tendons on the outside of my ankle, inside of my ankle, and my Achilles. So far all they are doing is Graston, eccentric holds with a band, and electric stimulation.
Now in hindsight, I realize that my new reactions were probably caused by the medications that I was prescribed in the past few months. I just still couldn’t wrap my mind around that this could all be caused by an antibiotic that I took months ago. I kept blaming myself for trying to run. Now I blame myself for taking the antibiotics in the first place. That’s one of the worst parts for me. Thinking that I wish I would not have taken it. Twice!
Questions:
Has anyone had tendon damage and neuropathy occur months after stopping the treatment?
Could these tendon issues and neuropathy be part of a cycle?
When you refer to cycles, which symptoms do you suffer from?
Has anyone had extreme tendinosis that healed? How long does the tendon damage take to heal? I am a teacher and luckily have been able to take it easy the past few weeks, but I only have a few more to go until I am on my feet all day again.
Since I took the pills 8 months ago, is it too late to detox?
I am a single mother of a 3 year old and an 11 year old and it breaks my heart that I can’t do things with them. Will there ever be an end to this? It is so scary not knowing and worrying that I will never get better.
Thank you everyone!!!!
Deana
10 years ago
Thanks Jimmy and Brandon…..I just had a cleaning done today…..I have 3 cavities instead of the one. I need two crowns and a filling. Just great!!!! Eventually Im probably gonna be in dentures anyway. No infections just yet but Ive got to get them fixed etc before too long….Its bad enough Im miserable with the acid reflux but I sure dont want to end up getting infections and have to be put on antibiotics!! Do any of u know if Clindamycin is ok to take incase I have to before I can get my teeth fixed??? I used it last year with no problems but now that Ive been floxed I dont know if it will be safe……Im allergic to Penicillin. Right now I just have some sore spots on my gums and bought a mouth rinse they said I needed to use called Periomed which has Fluoride……should I be ok to use this since its just a rinse?? Also does anyone know about taking raw unpasturized honey for my acid reflux?? I bought some today but havent used it……..heard it was good with cinnamon for the reflux. Thank u so much!!
Jimmy
10 years ago
Hi Kate! I’m so sorry to hear you’re going through this and that you’ve been Floxed by cipro. Everything you described is certainly not uncommon to the world of floxies and I’ve heard it all in one form or another from many people. I myself took Levaquin in May 2013 and had a delayed reaction over a month later, and then my help continue to decline with more and more joint and tendon damage… To the point where even a month ago I began having pain in my shoulders and hips that I had never had before. Some of my issues like neuropathy, Are much less but they are still there. But it seems like there are some people who take floor quinolone antibiotics, and obviously yes you probably did more damage by taking in NSAID and the other medications. NSA IDs have a carbolic molecule like the floor quinolones, tends to get lodged in your body or in your cells and doesn’t leave easily. I haven’t had quite the degree of issues that you had, but I also figured out pretty early what was going on and got off my feet as quick as possible. I only walked a little bit the first few months. And actually thought I had totally healed a few months ago as I was doing things I hadn’t done in months and felt 80% healed, only to have another reaction in January of this year that is led to my increasing symptoms. I’d be happy to go into more detail about what exactly is happening, at least as far as I know, including some medical research documents that I’ve compiled and also just to share my experience with you if you’re interested. You can email me at Jimmybruhl@gmail.com I also like to keep in touch with people who had more of a delayed reaction, or a gradual cascading of more symptoms, so that we can compare notes on going so I hope you will contact me there. I will say this, from what I have learned over the past year, it does seem like many people do get worsening symptoms until about 14 to 16 months and then there is something of a turn around and it takes a lot more time to get better… Many months or even years. I’m not a doctor, but I would recommend that you take it very easy on your feet and just allow yourself to try to heal. You should absolutely not take any additional NSAID. Personally I won’t take another pharmaceutical ever again as long as I live, and less it is a matter of life or death. There are so many medications that are neurotoxins or can cause problems for people who have been damaged by fluoroquinolone drugs. I would also guess that your “tendinitis” is actually “tendinosis.” And that from what I understand can heal, but it does take a lot of time. And usually you heal it through certain stretching and exercise, but for us flocs he’s until we start the recovery phase doing exercise can actually cause more damage. I’ll be happy to go into this more if you’d like to email me.
Kate
10 years ago
Hi Jimmy and Shawn,
Thank you for your responses! Jimmy – What happened in January to prompt your relapse? What types of symptoms are you experiencing? Yes, it was stupid of me to take NSAIDs, especially since I was on them for a long time last summer after my initial attack when I still did not know what was happening, but for some reason I thought maybe it wasn’t the Cipro doing this. I still had trouble really believing that this could be happening. I agree, I will never take another medication ever again! But what do people who are floxed take if they get a headache or need to take a pain reliever? I’ve been trying Lisa’s tips and taking the supplements, trying to eat as healthy and organic as possible and rest as much as possible, but I think all the resting is causing my muscles to atrophy, which could also be from the twitching and nerve damage.
Shawn-Yes, I have had roving pains for months, all winter when I thought I was doing “ok.” I would stretch three times a day, even on my lunch break at work. Not normal for a healthy 31 year old to have to do, but I was afraid if I broke any routine the pains would come back and sure enough they did! Did you do anything in particular to help speed along the tendon repair process? How long did it take for them to heal? I am very worried about going back to teaching on my feet all day in a few weeks!
Thank you!
Kate
10 years ago
Jimmy-Funny you should say that about Wobenzyme N. I just ordered it and took it for the first time the other day. I didn’t really notice any weird effects, but I’m skeptical about taking anything unknown these days. Yes, I had pain in my IT band off and on all winter during my remission period. I also had hip pain, but I did some piriformis stretches which helped the hip pain. I was doing a TON of stretching when I was feeling better. I also foam rolled twice a day which I think helped a lot. A physical therapist recently told me to get “the stick” which also helps to break up muscle adhesions. I don’t know that it works any better than the foam roller.
Thanks for the protein recommendation! I’ll try that! I think part of my muscle wasting, aside from not moving, is from lack of protein since I’ve been trying to up my organic vegetables and stay away from any tainted meats.
Regarding the reflux issues many of us experience often mentioned, IMO It is always worth while getting investigated for a hiatus hernia, a lot of us actually end up with one. This is due in part to the the class effect ADR of connective tissue damage/degeneration the FQs carry. ( the tendons/cartilage/ligaments/fascia etc ) This of course can affect the sphincter which is normally tightly closed & stops both solids & liquids backing up into your oesophagus, It is important to try to get an answer to this, IMO, as to continue to experience reflux long term can sometimes result in a condition known as barrettes oesophagus, due to the continual aggravation of the oesophageal tissues by the stomach acid.
Deana
10 years ago
Thank u Debs….this reflux has been horrible for me! I was thinking hiatal hernia possibly as an issue……the ct scan I had back in May showed stomach wall thickening but I was never told about it until they referred me to a Gastrologist a few weeks ago when the reflux started getting worse. I hate that I have to wait another 5 weeks and now with my teeth bothering me….Im a mess and trying not to stress so much over how I feel.
Chris
10 years ago
Hello, everyone. I wonder if you have experienced the following problem. Since I told my doctor that I was harmed by the Levaquin I was given, private investigators have harassed me. They have spiked my food, make their presence be known in various ways within my home, while shopping, etc., make it obvious that they have spoken with our friends/people at church (some of whom have believed their lies and turned against me). They have placed chemicals on kitchen towels that cause a temporary burning, chemicals on my bedding, etc. Thanks. Chris
Catherine
10 years ago
Hi Lisa
A while ago you posted a link to a discussion on this forum about Lyme disease and floxing. I’m sorry I can’t find it again, so please could you give it to me again?
Thanks x
Dean
10 years ago
Hello Everyone!
I havent been on here in a while! Im starting to feel better now, after I discovered a lot of my symptoms were related to a yeast/fungal infection. Most of my symptoms were GI related and since I started to address it im feeling much better.
Remember Cipro destroys all bacteria, it doesn’t distinguish the good and bad. Once all the bacteria in your stomach has been killed, the stomach/intestines become a breeding ground for yeast/fungi which thrive. Usually good bacteria such as L Accidipholus keeps the yeast in check but the cipro killed the L Acc.
I have been taking dilfucan which is starting to relieve my symptoms slowly. I have still have a long way to go to recover completely though, which I will do using natural anti fungals and probiotics.
Candida can cause all sorts of symptoms from itching to joint pain.
I hope your all recovering well! Just thought id let people know my progress!
Dean.
Catherine
10 years ago
Does anyone in this group know of anybody who had Lyme disease, and was subsequently floxed, but who was still able to make some sort of recovery?
rene
10 years ago
FYI: This proved to be be very helpful for me: Avoid any supplements or packaged foods, protein drinks, that contain Glutamine, Glutamate, MSG, Autolyzed or Hydrolyzed protein or yeast. These all effect the balance of Glutamate & Gabba in the brain. Since this is a CNS injury, & Peripheral Nervous, and Autonomic Nervous system Injury amongst additional things…..None of us need excess Glutamate hanging around. This leaves the brain in an excitotoxic state. Sleeplessness, Wired & Tired, Emotional, Anxious…& or more pain. They are not both necessarily present. ie: You may not have anxiousness, but if you have increase of pain or the other take at look at possible sources of any of the listed chemicals above Glutamine, Glutamic Acid, Monosodium Glutamate…. Avoid Whey products as well!
For all of who experience the worsening of symptoms/ pain from various supplements…..these are chemicals can really kick in painful episodes. Therefore be mindful, and strict about what exactly you are taking. All the gut issues that can develop after a year or 2, or right off the bat,….The gut is directly linked to the brain, the enteric nervous system… (also the terrain for the for Serotonin,Dopamine)….
God Bless All, and our Healing
Jimmy
10 years ago
I will add that a lot of people speak about the benefits of whey protein here, but I have always felt it made me feel worse. Eating a plant-based protein with lots of amino acids always made me feel better and helped my muscles to feel much better. I can notice a huge difference when I stop taking it.
deana
10 years ago
Hello again everyone. I haven’t taken any supplements since I was floxed at the end of February. I just had my magnesium checked a few weeks ago and it was normal. I don’t know what it was before or right after. Should I still take a supplement or just get it thru food? I’m also trying to figure what out what kind of protein shake I can make that won’t interfere with my acid reflux…..I’ve got to find a way to gain my weight back. Jimmy you mentioned a plant based protein but I can’t use with some of the ingredients. Thank u!!
Thank u Mark…..I do eat some chicken (not fried)….been avoiding all fried/greasy foods…..cant eat anything I used to eat and its really got me depressed. I will add more veggies. I havent eaten eggs cause Im not sure if those are acidic. Ive been trying to eat smaller meals throughout the day but I still experience the reflux just about everyday. Sometimes its seems my stomach isnt empyting like it should so Ive been avoiding breads lately.
Thank u Lisa….I will mention this to the Gastro dr when I see him to have the scope done. Im only using the carafate and the Zantac when I really need it but usually at nite I have to use the Maalox but Im only doing one spoonful…..sometimes twice a day if I really need to. I needed the carafate becuz the lower part of my throat has been hurting for awhile and it was slowly getting worse. I never knew acid reflux could be so miserable!
Would u happen to have any advice about dental things?? Im getting a cleaning tomorrow and will either be getting a tooth crowned or pulled.
I lose track of all the therapies that people have tried. Sorry! Can anyone tell me anything about PEMF (pulsed electromagnetic field) therapy? Good/Bad/Whatever info is welcome. Thanks!
Hi, Lisa. I’m hoping you or anyone else has some insight. I recently are out (which is a first in a long time, other than Chipotle), and I seem to be reacting to something. I’ve spoken to the restaurant and they have us a full and complete list of everything in the meal. It was wild fish and seafood (nothing farmed). But there was some butter (nonorganic I assume) and rice that was cooked in chicken stock (nonorganic I assume).
This is the most risky meal I’ve eaten in ten months. I have not eaten any meat or dairy product that isn’t organic for almost a year now. But my wife and I thought there was no way I’d react to butter or chicken broth. Looking back, I don’t know what I was thinking!
But even now, as I think and research, there’s a few thoughts. One, I thought that you (Lisa) had returned to the world of conventional meats and dairy. I assume some others have too. I also know that the Flox Report says that other than severe cases and those who had an immediate/allergic reaction, no significant dietary change was necessary. In other words, people wouldn’t react to conventional foods. And lastly, my own research say that fluoroquinolones are illegal to use in poultry, so presumably the rice cooked in broth would be FQ free. And also dairy cows are also not fed FQs. Beef cows, yes. Dairy cows, no. They are given other antibiotics but not FQs.
So, what on earth am I reacting to? The FB group answered that question in a variety of way but MSG seems to be a prevailing theory. Apparently it can cause some nervous system issues which I’m certainly having. And it’s clear that other floxies have reacted to it as well. The broth, by the way , most certainly had MSG. and since I’ve been all natural and whole food oriented for a year now, I wouldn’t have been exposed to it at home.
Any ideas or thoughts are much appreciated!
Shawn
Has anyone tried the GAPS diet (see the book Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride) as people are using the protocol to heal themselves of a variety of illnesses. The aim is to heal the intestinal lining and repopulate the intestines with the full gamut of beneficial bacteria, thereby restoring health.
Hi All
I went to a concert two days ago and the next day had nausea and a spike in my tendon issues in my forearms. I also have little pink rashes on my forearms. I am wondering if this could be from being out in the sun. The concert wasn’t until 5pm so the sun was not particularly strong, but am trying to account for the issue. Has anyone else had similar problems? Could the sun be the culprit?
Brandon
Hi Everyone,
Thank you Lisa so much for this site! This has been a terrifying experience and being able to share stories of hope is so reassuring.
My Cipro Story:
2/15/13-Prescribed Amoxicillin for an ear infection
3/4/13-Another ear infection, prescribed Cipro (Thankfully only took 2 500 mg pills out of the 7 day prescription)
At the time I was a runner and had been training for the tough mudder. I began getting shin splints and plantar fasciitis. Kept training until one day I ran through the shin pain and could not lift my feet. That pain continued for 4 months until I got custom inserts. I had to wear the inserts constantly or the pain would return. I remember going to the doctor and saying, “It hurts to lift my foot” and them telling me that doesn’t make sense, when it was really tendinitis the whole time.
Other symptoms that I did not connect:
-Swollen glands behind ears
-Thumb sore when texting
-Pain on top of foot like my shoelaces were too tight
11/7/13-Not feeling well, stupidly took leftover antibiotics, CIPRO!!!! (Once again took 2 500 mg pills) Right after I thought I better google this to see what it is for and was horrified about what I found!!!! Then I stupidly took Aleve the next day and had a fever and chills for 3 days. There is not a day in my life that I will not regret taking a leftover antibiotic or taking it in the first place last March without first seeing what it was. I never ever would have thought an antibiotic could do this. Also went back to the primary care doctor and told him and he said, “Cipro wouldn’t cause shin splints. It’s just the Achilles.”
Over the next few months I had minor pains here and there, plantar fasciitis, shins, IT band, but nothing major. I thought I was in the clear. I was taking Omega-3, glucosamine chondroitin, Vitamin C and B 12, and magnesium. I was doing spin class, elliptical, low impact aerobics, went dancing with my custom inserts, but still no running. I even went snowboarding!
March 2014-Noticed lump on the arch of my foot. Googled and saw it could be a plantar fibroma which can be caused by glucosmine chondroitin or excess Vitamin C. Around that same time the balls of my feet started burning. When I stood it felt like I was standing on marbles and burned. Went to two podiatrists, one said it was my metatarsals rubbing, one said Morton’s neuromas. Both confirmed I did not have a plantar fibroma, but I stopped taking the supplements just in case. (Did anyone else experience a lump in palm or foot after taking those supplements?) The podiatrist took my full length athletic inserts to adjust for my foot bones and left me with my 3/4 length inserts.
April 2014-Had gum surgery, lots of Novocaine, prescribed Amoxicillin, and Tylenol with Codeine. The burning pain went away and I was feeling pretty good so I decided to run around my backyard for a few minutes as a “test run with my 3/4 insoles.” While running I felt this pain in my ankle, but it wasn’t my shin so I thought it was ok. Two days later I tried the treadmill for 2 minutes and then I got an excruciating pain in my calf right next to my shin bone which I thought was a different kind of shin splints. The pain in my posterior tibial muscle and tendon was so bad that I could not walk or stand for weeks.I thought it was just shin splints again, but now looking back realize that the meds for my gum surgery probably triggered the reaction while running or maybe the damage was brewing the whole time? Also, two days before running was my 31st birthday, drank a bit too much and took Aleve the next morning.
June 2014-I went to a foot and ankle specialist and was told “posterior tibial tendinitis.” I went to a physical therapist and was told “Achilles tendinitis in both ankles.” Was prescribed NAISDs for pain, which I took for a few weeks. After an ankle brace for weeks with no improvement and awful pain especially at night in both ankles I was put in a cast for 3 weeks. They did MRIs and they didn’t show anything except minor swelling and fatty tissue in my posterior tibial tendon. At this point I was still thinking it was just my stupidity for trying to run in 3/4 insoles and didn’t make the connection back to the Cipro as I had taken it months ago!
July 2014-Started getting pins and needles and numbness in hands and arms. Burning pain in soles of feet again. Leg muscles started twitching. Twitching spread to other parts of the body randomly. Twitching is especially bad at night. I’ve started Physical Therapy for my ankles and the Physical Therapist said there’s definitely something wrong as I have tendinosis in the tendons on the outside of my ankle, inside of my ankle, and my Achilles. So far all they are doing is Graston, eccentric holds with a band, and electric stimulation.
Now in hindsight, I realize that my new reactions were probably caused by the medications that I was prescribed in the past few months. I just still couldn’t wrap my mind around that this could all be caused by an antibiotic that I took months ago. I kept blaming myself for trying to run. Now I blame myself for taking the antibiotics in the first place. That’s one of the worst parts for me. Thinking that I wish I would not have taken it. Twice!
Questions:
Has anyone had tendon damage and neuropathy occur months after stopping the treatment?
Could these tendon issues and neuropathy be part of a cycle?
When you refer to cycles, which symptoms do you suffer from?
Has anyone had extreme tendinosis that healed? How long does the tendon damage take to heal? I am a teacher and luckily have been able to take it easy the past few weeks, but I only have a few more to go until I am on my feet all day again.
Since I took the pills 8 months ago, is it too late to detox?
I am a single mother of a 3 year old and an 11 year old and it breaks my heart that I can’t do things with them. Will there ever be an end to this? It is so scary not knowing and worrying that I will never get better.
Thank you everyone!!!!
Thanks Jimmy and Brandon…..I just had a cleaning done today…..I have 3 cavities instead of the one. I need two crowns and a filling. Just great!!!! Eventually Im probably gonna be in dentures anyway. No infections just yet but Ive got to get them fixed etc before too long….Its bad enough Im miserable with the acid reflux but I sure dont want to end up getting infections and have to be put on antibiotics!! Do any of u know if Clindamycin is ok to take incase I have to before I can get my teeth fixed??? I used it last year with no problems but now that Ive been floxed I dont know if it will be safe……Im allergic to Penicillin. Right now I just have some sore spots on my gums and bought a mouth rinse they said I needed to use called Periomed which has Fluoride……should I be ok to use this since its just a rinse?? Also does anyone know about taking raw unpasturized honey for my acid reflux?? I bought some today but havent used it……..heard it was good with cinnamon for the reflux. Thank u so much!!
Hi Kate! I’m so sorry to hear you’re going through this and that you’ve been Floxed by cipro. Everything you described is certainly not uncommon to the world of floxies and I’ve heard it all in one form or another from many people. I myself took Levaquin in May 2013 and had a delayed reaction over a month later, and then my help continue to decline with more and more joint and tendon damage… To the point where even a month ago I began having pain in my shoulders and hips that I had never had before. Some of my issues like neuropathy, Are much less but they are still there. But it seems like there are some people who take floor quinolone antibiotics, and obviously yes you probably did more damage by taking in NSAID and the other medications. NSA IDs have a carbolic molecule like the floor quinolones, tends to get lodged in your body or in your cells and doesn’t leave easily. I haven’t had quite the degree of issues that you had, but I also figured out pretty early what was going on and got off my feet as quick as possible. I only walked a little bit the first few months. And actually thought I had totally healed a few months ago as I was doing things I hadn’t done in months and felt 80% healed, only to have another reaction in January of this year that is led to my increasing symptoms. I’d be happy to go into more detail about what exactly is happening, at least as far as I know, including some medical research documents that I’ve compiled and also just to share my experience with you if you’re interested. You can email me at Jimmybruhl@gmail.com I also like to keep in touch with people who had more of a delayed reaction, or a gradual cascading of more symptoms, so that we can compare notes on going so I hope you will contact me there. I will say this, from what I have learned over the past year, it does seem like many people do get worsening symptoms until about 14 to 16 months and then there is something of a turn around and it takes a lot more time to get better… Many months or even years. I’m not a doctor, but I would recommend that you take it very easy on your feet and just allow yourself to try to heal. You should absolutely not take any additional NSAID. Personally I won’t take another pharmaceutical ever again as long as I live, and less it is a matter of life or death. There are so many medications that are neurotoxins or can cause problems for people who have been damaged by fluoroquinolone drugs. I would also guess that your “tendinitis” is actually “tendinosis.” And that from what I understand can heal, but it does take a lot of time. And usually you heal it through certain stretching and exercise, but for us flocs he’s until we start the recovery phase doing exercise can actually cause more damage. I’ll be happy to go into this more if you’d like to email me.
Hi Jimmy and Shawn,
Thank you for your responses! Jimmy – What happened in January to prompt your relapse? What types of symptoms are you experiencing? Yes, it was stupid of me to take NSAIDs, especially since I was on them for a long time last summer after my initial attack when I still did not know what was happening, but for some reason I thought maybe it wasn’t the Cipro doing this. I still had trouble really believing that this could be happening. I agree, I will never take another medication ever again! But what do people who are floxed take if they get a headache or need to take a pain reliever? I’ve been trying Lisa’s tips and taking the supplements, trying to eat as healthy and organic as possible and rest as much as possible, but I think all the resting is causing my muscles to atrophy, which could also be from the twitching and nerve damage.
Shawn-Yes, I have had roving pains for months, all winter when I thought I was doing “ok.” I would stretch three times a day, even on my lunch break at work. Not normal for a healthy 31 year old to have to do, but I was afraid if I broke any routine the pains would come back and sure enough they did! Did you do anything in particular to help speed along the tendon repair process? How long did it take for them to heal? I am very worried about going back to teaching on my feet all day in a few weeks!
Thank you!
Jimmy-Funny you should say that about Wobenzyme N. I just ordered it and took it for the first time the other day. I didn’t really notice any weird effects, but I’m skeptical about taking anything unknown these days. Yes, I had pain in my IT band off and on all winter during my remission period. I also had hip pain, but I did some piriformis stretches which helped the hip pain. I was doing a TON of stretching when I was feeling better. I also foam rolled twice a day which I think helped a lot. A physical therapist recently told me to get “the stick” which also helps to break up muscle adhesions. I don’t know that it works any better than the foam roller.
Thanks for the protein recommendation! I’ll try that! I think part of my muscle wasting, aside from not moving, is from lack of protein since I’ve been trying to up my organic vegetables and stay away from any tainted meats.
Hi all
Regarding the reflux issues many of us experience often mentioned, IMO It is always worth while getting investigated for a hiatus hernia, a lot of us actually end up with one. This is due in part to the the class effect ADR of connective tissue damage/degeneration the FQs carry. ( the tendons/cartilage/ligaments/fascia etc ) This of course can affect the sphincter which is normally tightly closed & stops both solids & liquids backing up into your oesophagus, It is important to try to get an answer to this, IMO, as to continue to experience reflux long term can sometimes result in a condition known as barrettes oesophagus, due to the continual aggravation of the oesophageal tissues by the stomach acid.
Thank u Debs….this reflux has been horrible for me! I was thinking hiatal hernia possibly as an issue……the ct scan I had back in May showed stomach wall thickening but I was never told about it until they referred me to a Gastrologist a few weeks ago when the reflux started getting worse. I hate that I have to wait another 5 weeks and now with my teeth bothering me….Im a mess and trying not to stress so much over how I feel.
Hello, everyone. I wonder if you have experienced the following problem. Since I told my doctor that I was harmed by the Levaquin I was given, private investigators have harassed me. They have spiked my food, make their presence be known in various ways within my home, while shopping, etc., make it obvious that they have spoken with our friends/people at church (some of whom have believed their lies and turned against me). They have placed chemicals on kitchen towels that cause a temporary burning, chemicals on my bedding, etc. Thanks. Chris
Hi Lisa
A while ago you posted a link to a discussion on this forum about Lyme disease and floxing. I’m sorry I can’t find it again, so please could you give it to me again?
Thanks x
Hello Everyone!
I havent been on here in a while! Im starting to feel better now, after I discovered a lot of my symptoms were related to a yeast/fungal infection. Most of my symptoms were GI related and since I started to address it im feeling much better.
Remember Cipro destroys all bacteria, it doesn’t distinguish the good and bad. Once all the bacteria in your stomach has been killed, the stomach/intestines become a breeding ground for yeast/fungi which thrive. Usually good bacteria such as L Accidipholus keeps the yeast in check but the cipro killed the L Acc.
I have been taking dilfucan which is starting to relieve my symptoms slowly. I have still have a long way to go to recover completely though, which I will do using natural anti fungals and probiotics.
Candida can cause all sorts of symptoms from itching to joint pain.
I hope your all recovering well! Just thought id let people know my progress!
Dean.
Does anyone in this group know of anybody who had Lyme disease, and was subsequently floxed, but who was still able to make some sort of recovery?
FYI: This proved to be be very helpful for me: Avoid any supplements or packaged foods, protein drinks, that contain Glutamine, Glutamate, MSG, Autolyzed or Hydrolyzed protein or yeast. These all effect the balance of Glutamate & Gabba in the brain. Since this is a CNS injury, & Peripheral Nervous, and Autonomic Nervous system Injury amongst additional things…..None of us need excess Glutamate hanging around. This leaves the brain in an excitotoxic state. Sleeplessness, Wired & Tired, Emotional, Anxious…& or more pain. They are not both necessarily present. ie: You may not have anxiousness, but if you have increase of pain or the other take at look at possible sources of any of the listed chemicals above Glutamine, Glutamic Acid, Monosodium Glutamate…. Avoid Whey products as well!
For all of who experience the worsening of symptoms/ pain from various supplements…..these are chemicals can really kick in painful episodes. Therefore be mindful, and strict about what exactly you are taking. All the gut issues that can develop after a year or 2, or right off the bat,….The gut is directly linked to the brain, the enteric nervous system… (also the terrain for the for Serotonin,Dopamine)….
God Bless All, and our Healing
I will add that a lot of people speak about the benefits of whey protein here, but I have always felt it made me feel worse. Eating a plant-based protein with lots of amino acids always made me feel better and helped my muscles to feel much better. I can notice a huge difference when I stop taking it.
Hello again everyone. I haven’t taken any supplements since I was floxed at the end of February. I just had my magnesium checked a few weeks ago and it was normal. I don’t know what it was before or right after. Should I still take a supplement or just get it thru food? I’m also trying to figure what out what kind of protein shake I can make that won’t interfere with my acid reflux…..I’ve got to find a way to gain my weight back. Jimmy you mentioned a plant based protein but I can’t use with some of the ingredients. Thank u!!