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Tess
10 years ago
Melanie and Kel! Understand me right now. It feels good to hear that other people also lost the sensation of this medication. Of course I am not happy that this hit you but it’s a nice feeling that you are not alone. Very sad to read about how hard you have it. Melanie, I have also had the electricity in your body. It has vibrated and fluttered. Awful awful! The medication has to give straight to the CNS. It is awful that doctors believe it is wrong in the mind of a man to feel unusual symptoms. I had severe seizures and it said they were mentally. If you read the list of side effects, one should understand what it is for a poison.
Just flew in from the Rheumatologist and bore my arms are tired! She diagnosed me with
Fluoroquinolone Toxicity Syndrome or as she put it you have been floxed. She also thinks I have reactive arthritis and I was floxed on top of it. She says it sucks because they give you prednisone for Reactive Arthritis but Floxies should never take prednisone because it hurts your tendons even worse.
She also said Cipro gave me TMJ and a skin issue on y face ears and scalp.
She wants me to change my diet and maybe think about taking a DMARD.
I see her again in 6 weeks.
Mike Out
Daniela
10 years ago
Hi Michael, if your dr knows about floxing, why would she prescribe plaquenil or methotrexate or other dmard?
I just saw a dr today too at a free/low cost clinic who knew right off the bat what cipro and levaquin do. I don’t know why the several hundred dollar dr I saw earlier this year not only denies it, but insists on both RA and Lyme (with extensive expensive testing)
Hi all,
I know most floxed women find their symptoms flare at certain times of their menstrual cycle, but does anyone know why this is?
I have two slightly better days just before my period, and then crash back down again. If I could just feel like that for longer, life would be more tolerable, but I have no idea why that happens.
I had some tests recently which showed that I have absolutely no friendly bacteria in my gut at all. My ND has recommended several supplements including probiotics, but I am wary of taking anything now. I have read that probiotics are contraindicated if you have been floxed as they encourage pathogenic yeasts. She has also recommended a product called Ultra Muscleze, which is mostly magnesium with some calcium (I think this is contraindicated too?)
The other products she has recommended are: GI Microb X, Uristatin, Nutrigest, Bio Immunozyme Forte, Paleo Greens and Ultraclear Sustain.
Aside from the cost, I am wary of all supplements now. Have any of you tried any of these products, or heard reports (good or bad) of any of them?
Thanks
Got a flu shot yesterday. Woke up today with very achey muscles and joints. Much like I did before therapy started helping so much. At first I thought this was a set back but then my husband said he feels the same way (also had the shot).
What have your experiences been with the flu vaccine?
Lisa, I’ve been sick with mystery illness for the last 3.5 years and only realizing i think, i’m sure, i was floxed in the last week. I’m reading your site now and feeling so hopeful and so grateful. it seriously sucks to realize this is what has happened. I FEEL poisoned now knowing this. every little odd sensation that used to feel so scary and frustratingly mysterious, now i know what it is and it is NOT a good feeling. But i also have a deep sense of peace about all this that I have not had since i began obsessively searching for answers 3 years ago. And I have more resolve than ever to get through this. I finally feel like i can stop searching in vain and move onto more healing progress with all the information i have gathered over the years, now i understand even better how to apply it for myself.
I can’t wait til i get to turn my recovery story in to you someday:) You have done a wonderful thing to create such a positive place for healing! thank you!!
Andrew
10 years ago
So I am having a lot of problems with my gut and my sinuses and want to try something natural to get rid of the invaders that are causing this. Pre – floxing I would have used oregano oil and/or cats claw. Anyone have any thoughts on these? I was doing much better until about one week ago when I ate some bad food at a charity event and drank a few beers. Around that time I also used Ban Classic solid deodorant, which I never use, chewed some Dentyne, which I also never do etc. I use a very natural deodorant made with essential oils. Now I feel like shit again, achilles sore, bottom of my foot sore and just this weekend my left knee feels like I damaged the ligament or something. All of these events began about a week ago. Could I have floxed myself again with this crap or I am just overreacting to some natural aches and pains. Anyway – any advice on the Cat’s Claw or Oregano oil would be much appreciated.
Mike
10 years ago
On the topic of Dr.s starting to acknowledge FQ toxicity, I saw a rheumatologist in Denver that agrees that what I am going through is FQ toxicity. He has seen 12 floxed patients now. For now he has told me to take Vitamin C. He said that floxing seems similar to scurvy…..
Colleen
10 years ago
When I first realized that what I was experiencing was FQ toxicity I could find zero hopeful stories about recovery. I am writing to say that after about one year I began to be able to feel like I was getting better. Now almost twos years in, I am almost normal. I don’t think that any particular remedy helped. Mostly I kept moving, some massage, some magnesium, but I think it was mostly time and continuing to move. Hope this helps someone.
So my Rheumatologist who treats quite a few floxies has recommends that I go on the Terry Whals diet. Anyone here have any success on it?
melanie kemp
10 years ago
I looked into it Michael. Looks interesting. Ijust have so many food sensitivities I can only eat what I can eat and cant really follow any particular diet. If I could id give it a go.Cant hurt
melanie kemp
10 years ago
How do you al feel about just working through the pain/sickness regardless of how horrible you feel. Is it better than laying down . I find mornings are just horrible for me.. I start to feel semi ok going into the evenings.. this was the same in 2010 . I spent most days in bed and got up in the evenings for a few hours. This time I’m trying to stay up during the day no matter what…don’t know if it helps or not really.
Anyone here tried PQQ Pyrroloquinoline Quinone? I have been doing some research on this and I am thinking of trying it.
PQQ was an effective antioxidant protecting mitochondria against oxidative stress-induced lipid peroxidation, protein carbonyl formation and inactivation of the mitochondrial respiratory chain.
Any comments?
Anyone have or experienced burning in eyelids and face, mouth with a metallic taste? I have the worst burning and aching feeling in left foot and toes. And anyone have frequent urination especially in the morning. I’m talking like clockwork everynight 3am then 6am, 7am, 8am?
Any suggestions on what this may be from besides maybe a detox reaction?
rene
10 years ago
In support of Avoiding Non Organic Meats:
Frontline also reports that meat may be a source of potentially lethal infections—not simply because you’re eating antibiotics and therefore building resistance, but because the meat is tainted with drug-resistant bacteria that can cause disease if the meat is improperly handled or undercooked.
One example given is drug-resistant urinary infections, which are on the rise. If the antibiotics fail to wipe out the bacteria, the infection can progress to your kidneys, which allows the bacteria access to your blood. The result is sepsis, which kills 40,000 Americans each year.
Using state of the art genome sequencing, researchers were able to compare E.coli samples found on supermarket meat with E.coli samples collected from patients with drug-resistant urinary tract infections. In this way, they were able to genetically link more than 100 urinary tract infections to tainted supermarket meat products
melanie kemp
10 years ago
Its my Birthday today. I didn’t do much except get myself get out of bed.. sat out in the sun awhile. It was a lovely day here in San Antonio Tx. Took the dogs for a 15 minute walk… quite a feate for me. Hubby got home early at noon to just spend the day.. Quite a different birthday from last year. Last year we got dressed up and went out to a Halloween party.. never did I think id be in a relapse this year…and what a relapse!!. Talked to my mum in England who reassured me id get better…just give it time… Its so easy to think the worst when illness goes on for awhile. I hope she’s right because this is just horrible. There’s living and then there’s existing and right now I’m just trying to keep my head above water.
Hopefully my 57th birthday will look a whole lot different to this one my 56th.
melanie kemp
10 years ago
Today’s update. Got up at 9.00 am. I usually can’t get up until late afternoon as mornings are really rough for me. But talking to another floxy going through a relapse and she said she makes herself get up no matter what. So as soon as I opened my eyes I got up. Showered. Made some scrambled eggs. Hubby left to coach football and I proceeded to clean house. Even cleaned off the back patio. Did some washing etc. I kinda started to lose wind around noon and decided I’d better eat something and sit down. If it wasn’t for this foggy head I could go on for longer but it really distracts me. But anyways. I got some things done and that’s all that matters. Nothing on what I used to be able to do and that’s frustrating to know limits but I suppose I should be happy that I wasn’t laying in bed feeling totally miserable.
I have this inner feeling that I cant really describe.Its like I cant relax. I have to keep moving to feel somewhat ok. I hate it…
Coco
10 years ago
I just found this website and read through the comments. I have pretty much all of the symptoms you guys list. I’ve taken cipro for UTIs and probably many times for strep throat growing up. I was diagnosed with Multiple Sclerosis in 2008 and thought the neuropathy and fatigue were just part of the package. Are you telling me there might be something I could do to lessen the symptoms??
Melanie and Kel! Understand me right now. It feels good to hear that other people also lost the sensation of this medication. Of course I am not happy that this hit you but it’s a nice feeling that you are not alone. Very sad to read about how hard you have it. Melanie, I have also had the electricity in your body. It has vibrated and fluttered. Awful awful! The medication has to give straight to the CNS. It is awful that doctors believe it is wrong in the mind of a man to feel unusual symptoms. I had severe seizures and it said they were mentally. If you read the list of side effects, one should understand what it is for a poison.
Repost: why we should avoid GRAPEFRUIT
http://en.m.wikipedia.org/wiki/Grapefruit_juice_effect
Just flew in from the Rheumatologist and bore my arms are tired! She diagnosed me with
Fluoroquinolone Toxicity Syndrome or as she put it you have been floxed. She also thinks I have reactive arthritis and I was floxed on top of it. She says it sucks because they give you prednisone for Reactive Arthritis but Floxies should never take prednisone because it hurts your tendons even worse.
She also said Cipro gave me TMJ and a skin issue on y face ears and scalp.
She wants me to change my diet and maybe think about taking a DMARD.
I see her again in 6 weeks.
Mike Out
Hi Michael, if your dr knows about floxing, why would she prescribe plaquenil or methotrexate or other dmard?
I just saw a dr today too at a free/low cost clinic who knew right off the bat what cipro and levaquin do. I don’t know why the several hundred dollar dr I saw earlier this year not only denies it, but insists on both RA and Lyme (with extensive expensive testing)
Hi all,
I know most floxed women find their symptoms flare at certain times of their menstrual cycle, but does anyone know why this is?
I have two slightly better days just before my period, and then crash back down again. If I could just feel like that for longer, life would be more tolerable, but I have no idea why that happens.
I had some tests recently which showed that I have absolutely no friendly bacteria in my gut at all. My ND has recommended several supplements including probiotics, but I am wary of taking anything now. I have read that probiotics are contraindicated if you have been floxed as they encourage pathogenic yeasts. She has also recommended a product called Ultra Muscleze, which is mostly magnesium with some calcium (I think this is contraindicated too?)
The other products she has recommended are: GI Microb X, Uristatin, Nutrigest, Bio Immunozyme Forte, Paleo Greens and Ultraclear Sustain.
Aside from the cost, I am wary of all supplements now. Have any of you tried any of these products, or heard reports (good or bad) of any of them?
Thanks
Got a flu shot yesterday. Woke up today with very achey muscles and joints. Much like I did before therapy started helping so much. At first I thought this was a set back but then my husband said he feels the same way (also had the shot).
What have your experiences been with the flu vaccine?
Lisa, I’ve been sick with mystery illness for the last 3.5 years and only realizing i think, i’m sure, i was floxed in the last week. I’m reading your site now and feeling so hopeful and so grateful. it seriously sucks to realize this is what has happened. I FEEL poisoned now knowing this. every little odd sensation that used to feel so scary and frustratingly mysterious, now i know what it is and it is NOT a good feeling. But i also have a deep sense of peace about all this that I have not had since i began obsessively searching for answers 3 years ago. And I have more resolve than ever to get through this. I finally feel like i can stop searching in vain and move onto more healing progress with all the information i have gathered over the years, now i understand even better how to apply it for myself.
I can’t wait til i get to turn my recovery story in to you someday:) You have done a wonderful thing to create such a positive place for healing! thank you!!
So I am having a lot of problems with my gut and my sinuses and want to try something natural to get rid of the invaders that are causing this. Pre – floxing I would have used oregano oil and/or cats claw. Anyone have any thoughts on these? I was doing much better until about one week ago when I ate some bad food at a charity event and drank a few beers. Around that time I also used Ban Classic solid deodorant, which I never use, chewed some Dentyne, which I also never do etc. I use a very natural deodorant made with essential oils. Now I feel like shit again, achilles sore, bottom of my foot sore and just this weekend my left knee feels like I damaged the ligament or something. All of these events began about a week ago. Could I have floxed myself again with this crap or I am just overreacting to some natural aches and pains. Anyway – any advice on the Cat’s Claw or Oregano oil would be much appreciated.
On the topic of Dr.s starting to acknowledge FQ toxicity, I saw a rheumatologist in Denver that agrees that what I am going through is FQ toxicity. He has seen 12 floxed patients now. For now he has told me to take Vitamin C. He said that floxing seems similar to scurvy…..
When I first realized that what I was experiencing was FQ toxicity I could find zero hopeful stories about recovery. I am writing to say that after about one year I began to be able to feel like I was getting better. Now almost twos years in, I am almost normal. I don’t think that any particular remedy helped. Mostly I kept moving, some massage, some magnesium, but I think it was mostly time and continuing to move. Hope this helps someone.
So my Rheumatologist who treats quite a few floxies has recommends that I go on the Terry Whals diet. Anyone here have any success on it?
I looked into it Michael. Looks interesting. Ijust have so many food sensitivities I can only eat what I can eat and cant really follow any particular diet. If I could id give it a go.Cant hurt
How do you al feel about just working through the pain/sickness regardless of how horrible you feel. Is it better than laying down . I find mornings are just horrible for me.. I start to feel semi ok going into the evenings.. this was the same in 2010 . I spent most days in bed and got up in the evenings for a few hours. This time I’m trying to stay up during the day no matter what…don’t know if it helps or not really.
Anyone here tried PQQ Pyrroloquinoline Quinone? I have been doing some research on this and I am thinking of trying it.
PQQ was an effective antioxidant protecting mitochondria against oxidative stress-induced lipid peroxidation, protein carbonyl formation and inactivation of the mitochondrial respiratory chain.
Any comments?
http://en.wikipedia.org/wiki/Pyrroloquinoline_quinone
Anyone have or experienced burning in eyelids and face, mouth with a metallic taste? I have the worst burning and aching feeling in left foot and toes. And anyone have frequent urination especially in the morning. I’m talking like clockwork everynight 3am then 6am, 7am, 8am?
Any suggestions on what this may be from besides maybe a detox reaction?
In support of Avoiding Non Organic Meats:
Frontline also reports that meat may be a source of potentially lethal infections—not simply because you’re eating antibiotics and therefore building resistance, but because the meat is tainted with drug-resistant bacteria that can cause disease if the meat is improperly handled or undercooked.
One example given is drug-resistant urinary infections, which are on the rise. If the antibiotics fail to wipe out the bacteria, the infection can progress to your kidneys, which allows the bacteria access to your blood. The result is sepsis, which kills 40,000 Americans each year.
Using state of the art genome sequencing, researchers were able to compare E.coli samples found on supermarket meat with E.coli samples collected from patients with drug-resistant urinary tract infections. In this way, they were able to genetically link more than 100 urinary tract infections to tainted supermarket meat products
Its my Birthday today. I didn’t do much except get myself get out of bed.. sat out in the sun awhile. It was a lovely day here in San Antonio Tx. Took the dogs for a 15 minute walk… quite a feate for me. Hubby got home early at noon to just spend the day.. Quite a different birthday from last year. Last year we got dressed up and went out to a Halloween party.. never did I think id be in a relapse this year…and what a relapse!!. Talked to my mum in England who reassured me id get better…just give it time… Its so easy to think the worst when illness goes on for awhile. I hope she’s right because this is just horrible. There’s living and then there’s existing and right now I’m just trying to keep my head above water.
Hopefully my 57th birthday will look a whole lot different to this one my 56th.
Today’s update. Got up at 9.00 am. I usually can’t get up until late afternoon as mornings are really rough for me. But talking to another floxy going through a relapse and she said she makes herself get up no matter what. So as soon as I opened my eyes I got up. Showered. Made some scrambled eggs. Hubby left to coach football and I proceeded to clean house. Even cleaned off the back patio. Did some washing etc. I kinda started to lose wind around noon and decided I’d better eat something and sit down. If it wasn’t for this foggy head I could go on for longer but it really distracts me. But anyways. I got some things done and that’s all that matters. Nothing on what I used to be able to do and that’s frustrating to know limits but I suppose I should be happy that I wasn’t laying in bed feeling totally miserable.
I have this inner feeling that I cant really describe.Its like I cant relax. I have to keep moving to feel somewhat ok. I hate it…
I just found this website and read through the comments. I have pretty much all of the symptoms you guys list. I’ve taken cipro for UTIs and probably many times for strep throat growing up. I was diagnosed with Multiple Sclerosis in 2008 and thought the neuropathy and fatigue were just part of the package. Are you telling me there might be something I could do to lessen the symptoms??