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Esther
9 years ago
Thanks Catherine for responding; then there may be hope for me.
Sm, good luck with the serrapeptase! I hope it works as well for you and for anyone who gives it a shot. I am far from out of the woods yet but the Serrapeptase was the answer to my prayers.
CP
9 years ago
I still believe that Fluoroquinolone toxicity has two components: an initial direct toxicity and a prolonged immunological phase—I do not believe in lingering metabolites, DNA change, and so forth. There is no other way to explain the cycles besides immunology—every patient that has received an immunossupressant like prednisone has noticed improvement while taking it, although, the symptoms recur once it is discontinued; to me that seems like a process for containing the damage, and the steroid therapy duration should be longer than we have anticipated. Having said that, it appears that we are underutilizing immunosuppressants to limit the damage to our bodies. While steroids may pose a danger in patients who have used it chronically prior to being floxed, I believe for acute cases, suppression, and exacerbations, it might be the right thing to do to limit our sufferings. Steroid therapy and other immunossupressants can’t be for a few days or a few weeks, the therapy must be for months if not a few years. Again, most people seem to respond very well to steroids, but have a recurrence as soon as it is stopped. That in itself indicates an immunological process and response to steroids.
This would be an excellent study for the research scientists amongst us. We need animal (poor animals) study to look into this. There are animal studies that show the damage, but we now need animal studies to show if immunossupression can help us contain the Fluoroquinolone toxicity. I am surprised that amongst the thousands of people that have been damaged by Fluoroquinolones not a single study has been performed to look into the benefits/lack of benefits of immunossupressants!
Kel
9 years ago
P.S. Hmm, feeling arthritic in my hands sorry for the poor grammar plus tireeeeeed… This syndrome sucks the life out of it’s patients. We are patients, I think we just want to be treated as such. Validated, understood
CP
9 years ago
I agree that there are is a basic abnormality that develops in immune diseases, and not all are due to DNA injuries. There are many methods and causes for immune diseases. Some can be due to certain proteins we exhibit and some can be due to DNA damage like Lupus, . However, the point is that no matter how the immune system is being triggered, it is clear that damage does occur. While we may not be able correct the underlying cause for the abnormal immune response, we can certainly contain the immune response. At this moment and time, we have no idea how Fluoroquinolones have triggered our immune system, so we can’t go and fix the problem, but what we can do is to limit the intensity of the response. In all immune diseases, it is the response that causes the damage.Meanwhile, if one modifies ones diet and so forth no harm is done, but it may not be sufficient to change the injury that has occurred; perhaps, the injury is permanent and we won’t be able to fix it anytime soon, and perhaps modifying the abnormal response, which we can control, is a viable option.
We need animal studies to look into what happens when Floxed rats (poor rats :-() are exposed to immunosppressants. As far as your observation is concerned, there are many variables that could explain your observation. For example, those who did poorly or didn’t feel the difference perhaps didn’t receive appropriate amounts of immunosppressants and continued to become worse, or they were exposed to the immunossuppressants before the immune response developed, but they were suffering from the initial direct toxic effects of the FQs. Those who did benefit perhaps had already developed the immune response.
The bottom line is we need some objective studies to see what is going on, and we shouldn’t completely overlook traditional medicine. Changing diet, eating organic, taking Vit. C, etc. has done me zilch. The only improvement I have noticed is because my body inherently has been working overtime to fix the insult.
rich
9 years ago
looked at your blog destrudia glad your better now
Michael teeter
9 years ago
Hello everyone just an update after being to the hospital 4 times they finally admitted me.
My wife and family thought I was a goner. They think it is chrones. Many doctors here think it related to my flexing. But it seems I am getting better. I was wondering if any others here been through the chrones attack?
Mike out!
rich
9 years ago
yes dest.. have you written your story yet or you still floating around 90% recovery
B
9 years ago
I’m interested to know if anyone has had a low Sed rate test result after their reaction? I’ve been tested at 2 mm/hr two times over the last 4 month. It feels like an abnormal finding, but the doc doesn’t seem too concerned.
Peter
9 years ago
Honestly I’m losing more hope in this fight. I remember when I use to have crystal clear, white eyes, but over the last four months all that has changed. Now my eyes are terribly bloodshot all the time, many black and white floaters, every light seems like staring at the sun, and they always feel strained.
It’s frustrating that nothing is helping any of my symptoms and every time I think, it can’t get worse than symptom X, I get symptom Y, that’s ten times worse. I just don’t see how you guys stay strong on this and are improving. It’s to the point now that I can no longer drive a car due to oncoming headlights blinding me. It amazes me how I went grin having superior vision to not being able to drive a car in a few months, while so young.
I appreciate this site and the support, but I’m a realistic person and without any improvement, it’s hard to buy into things improving. 1 year, 7 months and it’s still getting worse.
Debs
9 years ago
Hi Melanie,
My own views on relapse are of course based on what I personally consider a relapse. a flare & a cycle of our symptoms, all these to me feel different. A relapse to me is when you FEEL completely refloxed, & then I often find I will get flares of various symptoms pop up on top. For me It ALWAYS involves the horrendous bodily weakness becoming enhanced greatly, feeling literally poisoned. This is how I tell the difference personally. These relapses I find are often triggered by trying to do too much, This coming suddenly to a full stop & crashing I believe from this respect it is mitochondrial, oxidative stress also contributing greatly to our issues overall. Flares seem to be triggered by something I cannot tolerate. Cycling involves for me various GROUPS of symptoms occurring together , sometimes this is the neuropathic pain , sometimes it will be the muscoskeletal system playing up etc.
SM
9 years ago
Debs- I appreciate your insights on the recovery process you shared on January 21st. I had read it but reread it just now. It certainly fits with the experiences of many recovered/significantly improving floxies I’ve read about. Like you said, everyone is different. And for me, I feel mine has been odd. I had a very acute reaction the day after taking a 6 day Cipro treatment (my first and only as far as I can tell). Those first 2 months were brutal- insomnia, joint point, muscle pain, nerve pain in my legs and feet so that the sheets hurt and I had to sleep with my feet outside the sheets, stomach pain, tendinitis all over, etc. The typical stuff. But between 2-8 months, things gradually improved. My tendon and joint pain and insomnia became minor to non-existent. The extreme stiffness improved significantly. So, it seemed that I had turned that proverbial corner. Well, since the 8 month mark, and now 19 months overall, I feel very stagnant. My symptoms have settled into nerve issues in my feet along with significant pain when I’m on them (unsure if that’s nerve related or connective tissues or whatever). I also have some nerve pain in my hands and maybe a little wrist tendinitis. I don’t feel it’s changed in the past 10+ months. And even if it has, it certainly hasn’t improved significantly. Like you said, we are all different. 19 months isn’t very long in floxie land, but based on how my body responded initially, I certainly didn’t believe I’d be here at this point. I’m just hoping that the next corner is, well, right around the corner. I need it. I’m sure we all do.
Peter
9 years ago
It’s good to see other people in the same boat, even though that sounds bad, but it gives me some hope. I plan to find a new doctor this week. I also need to see my ent doctor again to maybe finally fix the nose ulcer I’ve had for over a year, but also now to look at my nose as well. Sadly i must report that my left nostril is collapsing for some reason. It’s very disturbing and further bringing me down and impacting my breathing. It really does seem like i can’t win. I’ve accepted i will need surgery at this point, but maybe he’ll have something else to say. I’m not really sure. This illness just leaves me scratching my head daily and many of my problems i feel a are unfortunately not treatable / can never return me to 100%.
Daniela
9 years ago
Hope it lasts. I’ve been in a horrendous state for five years but it seems to be getting better. I did so many things for all the symptoms that popped up along the way, but no medications no grains no dairy seemed to do the trick 😉 People are recommending eating this way for IB MS Autism — working for me, along with gentle yoga.
hello Lisa,
every afternoon I have cold , but I don’t have fever can this also be from the cipro?
or shall i look for other cause?
thank you so much for this site
marianne
mark
9 years ago
destruida, I appreciate your posts and learn a lot from you. I’m not certain if you’ve talked about this before, but do you believe that fq’s or metabolites stay inside the body and that is why it takes so long to recover, or that damage is done, enzymes impacted in healthy tissue, and then we have an autoimmune response to all the damage? i know you have done a lot of research. what have you found in your journey to understand? thank you. mark
mark
9 years ago
destruida, i also wanted to ask for more detail about your tendon issues. i have seen your blog but you don’t really address tendon issues that i saw. for me, i’m in a wheelchair and unable to walk but a few feet a day before tendons give out and hurt and i’m afraid of rupture. did that happen to you? how did you take care of yourself, do shopping and all?
Peter
9 years ago
So the antibiotic is not working and I’m developing even more symptoms. I’m starting to lean toward the option of heading to the ER at this point, since my doctor failed to notice any of these symptom and I’ve suddenly gotten so much worse. If levaquin poisoning wasnt enough, now this.
cttightend80
9 years ago
Hi,
I just want to share my timeline. No one around me understands what’s going on and need to just let it out. I took cipro back in June 2014 for a reoccurring sinus infection. I wish I just lived with the infection and beat it naturally… I took amoxicillin for two weeks, sinus infection came back. Took cipro for two weeks and infection didn’t come back and never got one since. About a month later I started getting weird symptoms. I could barely get off the couch to make it to work, my calves were so tight and in pain. Within the first month I experienced the following symptoms: calf tightness, itchy ears, extremely cold feet, brain fog, slightly white coated swollen tongue, heartburn, fatigue, lower back pain and extreme muscle spasms/twitches in random places every day. I read so much online thinking it was candida, parasites or I was floxed… I started taking magnesium internally and externally, loads of probiotics, multivitamins, etc… Things started to get a bit better for several months until I started hearing clicking throughout my body. It’s mainly in my upper back and if I rotate and twist my back, I can hear clicking and griding noises. It is now January 2015 and I have the following symptoms: still slightly swollen tongue, clicking throughout body, sometimes fatigue and occasional muscle twitching. I’ve been to many doctors since this has happened. They’ve diagnosed me from fungus infection to bacterial infection to my favorite, ANXIETY “all in my head.” My recent labwork came back as vitamin D deficient so I’ve been taking 50,000 mg prescribed for about a month now, no improvement really. I’m going to a rheumatologist today, because my CPK levels are elevated. They think I have an autoimmune disease, but I know it’s the cipro. Overall I have gotten somewhat better over the last several months, can exercise moderately with some pain. My main worry now is the clicking noises; joint or muscle issues. Thanks for letting me vent.
cttightend80
9 years ago
Just got back from rheumatologist… She told me everyone pops with age as long as it’s not hurting. I told her it was from the cipro; she kinda laughed and changed subjects quickly. While I was in there, a nurse poked her head in and asked the Dr. which prescription to give to another patient. She quickly said cipro 500 mg. I just couldn’t believe that happened. I just quietly said, don’t do it. She doesn’t believe cipro can cause anything that bad and she’s been prescribing it for 13 years. I asked her… “then why couldn’t I walk after the cipro symptoms started?” She said she had no idea and probably wasn’t cipro. Anyways, they’re doing a bunch more tests on me. Never ends!
Thanks Catherine for responding; then there may be hope for me.
Sm, good luck with the serrapeptase! I hope it works as well for you and for anyone who gives it a shot. I am far from out of the woods yet but the Serrapeptase was the answer to my prayers.
I still believe that Fluoroquinolone toxicity has two components: an initial direct toxicity and a prolonged immunological phase—I do not believe in lingering metabolites, DNA change, and so forth. There is no other way to explain the cycles besides immunology—every patient that has received an immunossupressant like prednisone has noticed improvement while taking it, although, the symptoms recur once it is discontinued; to me that seems like a process for containing the damage, and the steroid therapy duration should be longer than we have anticipated. Having said that, it appears that we are underutilizing immunosuppressants to limit the damage to our bodies. While steroids may pose a danger in patients who have used it chronically prior to being floxed, I believe for acute cases, suppression, and exacerbations, it might be the right thing to do to limit our sufferings. Steroid therapy and other immunossupressants can’t be for a few days or a few weeks, the therapy must be for months if not a few years. Again, most people seem to respond very well to steroids, but have a recurrence as soon as it is stopped. That in itself indicates an immunological process and response to steroids.
This would be an excellent study for the research scientists amongst us. We need animal (poor animals) study to look into this. There are animal studies that show the damage, but we now need animal studies to show if immunossupression can help us contain the Fluoroquinolone toxicity. I am surprised that amongst the thousands of people that have been damaged by Fluoroquinolones not a single study has been performed to look into the benefits/lack of benefits of immunossupressants!
P.S. Hmm, feeling arthritic in my hands sorry for the poor grammar plus tireeeeeed… This syndrome sucks the life out of it’s patients. We are patients, I think we just want to be treated as such. Validated, understood
I agree that there are is a basic abnormality that develops in immune diseases, and not all are due to DNA injuries. There are many methods and causes for immune diseases. Some can be due to certain proteins we exhibit and some can be due to DNA damage like Lupus, . However, the point is that no matter how the immune system is being triggered, it is clear that damage does occur. While we may not be able correct the underlying cause for the abnormal immune response, we can certainly contain the immune response. At this moment and time, we have no idea how Fluoroquinolones have triggered our immune system, so we can’t go and fix the problem, but what we can do is to limit the intensity of the response. In all immune diseases, it is the response that causes the damage.Meanwhile, if one modifies ones diet and so forth no harm is done, but it may not be sufficient to change the injury that has occurred; perhaps, the injury is permanent and we won’t be able to fix it anytime soon, and perhaps modifying the abnormal response, which we can control, is a viable option.
We need animal studies to look into what happens when Floxed rats (poor rats :-() are exposed to immunosppressants. As far as your observation is concerned, there are many variables that could explain your observation. For example, those who did poorly or didn’t feel the difference perhaps didn’t receive appropriate amounts of immunosppressants and continued to become worse, or they were exposed to the immunossuppressants before the immune response developed, but they were suffering from the initial direct toxic effects of the FQs. Those who did benefit perhaps had already developed the immune response.
The bottom line is we need some objective studies to see what is going on, and we shouldn’t completely overlook traditional medicine. Changing diet, eating organic, taking Vit. C, etc. has done me zilch. The only improvement I have noticed is because my body inherently has been working overtime to fix the insult.
looked at your blog destrudia glad your better now
Hello everyone just an update after being to the hospital 4 times they finally admitted me.
My wife and family thought I was a goner. They think it is chrones. Many doctors here think it related to my flexing. But it seems I am getting better. I was wondering if any others here been through the chrones attack?
Mike out!
yes dest.. have you written your story yet or you still floating around 90% recovery
I’m interested to know if anyone has had a low Sed rate test result after their reaction? I’ve been tested at 2 mm/hr two times over the last 4 month. It feels like an abnormal finding, but the doc doesn’t seem too concerned.
Honestly I’m losing more hope in this fight. I remember when I use to have crystal clear, white eyes, but over the last four months all that has changed. Now my eyes are terribly bloodshot all the time, many black and white floaters, every light seems like staring at the sun, and they always feel strained.
It’s frustrating that nothing is helping any of my symptoms and every time I think, it can’t get worse than symptom X, I get symptom Y, that’s ten times worse. I just don’t see how you guys stay strong on this and are improving. It’s to the point now that I can no longer drive a car due to oncoming headlights blinding me. It amazes me how I went grin having superior vision to not being able to drive a car in a few months, while so young.
I appreciate this site and the support, but I’m a realistic person and without any improvement, it’s hard to buy into things improving. 1 year, 7 months and it’s still getting worse.
Hi Melanie,
My own views on relapse are of course based on what I personally consider a relapse. a flare & a cycle of our symptoms, all these to me feel different. A relapse to me is when you FEEL completely refloxed, & then I often find I will get flares of various symptoms pop up on top. For me It ALWAYS involves the horrendous bodily weakness becoming enhanced greatly, feeling literally poisoned. This is how I tell the difference personally. These relapses I find are often triggered by trying to do too much, This coming suddenly to a full stop & crashing I believe from this respect it is mitochondrial, oxidative stress also contributing greatly to our issues overall. Flares seem to be triggered by something I cannot tolerate. Cycling involves for me various GROUPS of symptoms occurring together , sometimes this is the neuropathic pain , sometimes it will be the muscoskeletal system playing up etc.
Debs- I appreciate your insights on the recovery process you shared on January 21st. I had read it but reread it just now. It certainly fits with the experiences of many recovered/significantly improving floxies I’ve read about. Like you said, everyone is different. And for me, I feel mine has been odd. I had a very acute reaction the day after taking a 6 day Cipro treatment (my first and only as far as I can tell). Those first 2 months were brutal- insomnia, joint point, muscle pain, nerve pain in my legs and feet so that the sheets hurt and I had to sleep with my feet outside the sheets, stomach pain, tendinitis all over, etc. The typical stuff. But between 2-8 months, things gradually improved. My tendon and joint pain and insomnia became minor to non-existent. The extreme stiffness improved significantly. So, it seemed that I had turned that proverbial corner. Well, since the 8 month mark, and now 19 months overall, I feel very stagnant. My symptoms have settled into nerve issues in my feet along with significant pain when I’m on them (unsure if that’s nerve related or connective tissues or whatever). I also have some nerve pain in my hands and maybe a little wrist tendinitis. I don’t feel it’s changed in the past 10+ months. And even if it has, it certainly hasn’t improved significantly. Like you said, we are all different. 19 months isn’t very long in floxie land, but based on how my body responded initially, I certainly didn’t believe I’d be here at this point. I’m just hoping that the next corner is, well, right around the corner. I need it. I’m sure we all do.
It’s good to see other people in the same boat, even though that sounds bad, but it gives me some hope. I plan to find a new doctor this week. I also need to see my ent doctor again to maybe finally fix the nose ulcer I’ve had for over a year, but also now to look at my nose as well. Sadly i must report that my left nostril is collapsing for some reason. It’s very disturbing and further bringing me down and impacting my breathing. It really does seem like i can’t win. I’ve accepted i will need surgery at this point, but maybe he’ll have something else to say. I’m not really sure. This illness just leaves me scratching my head daily and many of my problems i feel a are unfortunately not treatable / can never return me to 100%.
Hope it lasts. I’ve been in a horrendous state for five years but it seems to be getting better. I did so many things for all the symptoms that popped up along the way, but no medications no grains no dairy seemed to do the trick 😉 People are recommending eating this way for IB MS Autism — working for me, along with gentle yoga.
hello Lisa,
every afternoon I have cold , but I don’t have fever can this also be from the cipro?
or shall i look for other cause?
thank you so much for this site
marianne
destruida, I appreciate your posts and learn a lot from you. I’m not certain if you’ve talked about this before, but do you believe that fq’s or metabolites stay inside the body and that is why it takes so long to recover, or that damage is done, enzymes impacted in healthy tissue, and then we have an autoimmune response to all the damage? i know you have done a lot of research. what have you found in your journey to understand? thank you. mark
destruida, i also wanted to ask for more detail about your tendon issues. i have seen your blog but you don’t really address tendon issues that i saw. for me, i’m in a wheelchair and unable to walk but a few feet a day before tendons give out and hurt and i’m afraid of rupture. did that happen to you? how did you take care of yourself, do shopping and all?
So the antibiotic is not working and I’m developing even more symptoms. I’m starting to lean toward the option of heading to the ER at this point, since my doctor failed to notice any of these symptom and I’ve suddenly gotten so much worse. If levaquin poisoning wasnt enough, now this.
Hi,
I just want to share my timeline. No one around me understands what’s going on and need to just let it out. I took cipro back in June 2014 for a reoccurring sinus infection. I wish I just lived with the infection and beat it naturally… I took amoxicillin for two weeks, sinus infection came back. Took cipro for two weeks and infection didn’t come back and never got one since. About a month later I started getting weird symptoms. I could barely get off the couch to make it to work, my calves were so tight and in pain. Within the first month I experienced the following symptoms: calf tightness, itchy ears, extremely cold feet, brain fog, slightly white coated swollen tongue, heartburn, fatigue, lower back pain and extreme muscle spasms/twitches in random places every day. I read so much online thinking it was candida, parasites or I was floxed… I started taking magnesium internally and externally, loads of probiotics, multivitamins, etc… Things started to get a bit better for several months until I started hearing clicking throughout my body. It’s mainly in my upper back and if I rotate and twist my back, I can hear clicking and griding noises. It is now January 2015 and I have the following symptoms: still slightly swollen tongue, clicking throughout body, sometimes fatigue and occasional muscle twitching. I’ve been to many doctors since this has happened. They’ve diagnosed me from fungus infection to bacterial infection to my favorite, ANXIETY “all in my head.” My recent labwork came back as vitamin D deficient so I’ve been taking 50,000 mg prescribed for about a month now, no improvement really. I’m going to a rheumatologist today, because my CPK levels are elevated. They think I have an autoimmune disease, but I know it’s the cipro. Overall I have gotten somewhat better over the last several months, can exercise moderately with some pain. My main worry now is the clicking noises; joint or muscle issues. Thanks for letting me vent.
Just got back from rheumatologist… She told me everyone pops with age as long as it’s not hurting. I told her it was from the cipro; she kinda laughed and changed subjects quickly. While I was in there, a nurse poked her head in and asked the Dr. which prescription to give to another patient. She quickly said cipro 500 mg. I just couldn’t believe that happened. I just quietly said, don’t do it. She doesn’t believe cipro can cause anything that bad and she’s been prescribing it for 13 years. I asked her… “then why couldn’t I walk after the cipro symptoms started?” She said she had no idea and probably wasn’t cipro. Anyways, they’re doing a bunch more tests on me. Never ends!