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I had a very similar experience very recently but from Macrobid (different family of antibiotics, I know). I guess it’s even more rare but symptoms are pretty much identical. Dr referred to it as drug induced liver injury with peripheral neuropathy. It’s been hell.
I wrote about my story on my site, but it has swears 🙂 Short (filtered) version:
I had a hysterectomy in March. Needed to be cathed for a few days so doc ordered preventative macrobid for 2 weeks. (anyone else here have this from macrobid?) I knew something was very wrong. Shortness of breath, legs were reddish/purple, muscles and joints hurt so much, headaches, extreme exhaustion, metallic taste in mouth, elevated liver tests, dehydration (even tho I drank a ton of water) and upper right quadrant pain.
Went to ER. Called GP and surgeon. Talked to family and friends. Everyone said I was fine and just a slow healer. No one would listen.
Test after test crossed causes for elevated liver off the list. Drs had no clue. I finally started doing my own research and after reading a ton, I knew I had drug induced liver injury with peripheral neuropathy. I went to GI Specialist and he said he wished all his patients came in with their own diagnosis and concurred with all of my findings. He said it could take one year but should get better soon.
It has been over 4 months and my legs still hurt but not as constant as before. I have gained a ton of weight and cannot take off any no matter what I do. Drs don’t want to touch me with a ten foot pole and just offer to prescribe stuff (at same facility as all the docs who ignored me in the beginning). I made it clear I am not blaming anyone – I just want help.
Saw my chiropractor today who helped a lot by explaining things and figuring out a treatment plan. Because of the liver injury, I didn’t heal right and have a lot of scar tissue in my abdomen as well as nerve, joint and muscle issues. Never had any of this before. He also said the weight (which is all in the belly) is probably from backed up liver as well.
Anyway, like I said…it’s been an absolute nightmare. And I know it isn’t exactly the same – different med and all – but it is very hard to find anyone (even professionals) who can relate.
Well everyone I go in for more tests and last time I had a very high CRP. I really believe I was floxed when I took Cipro and now they think the initial infection may have cause reactive arthritis on top of it. I also took a 23andme test and I am going to a natural doc who is going to start me on PEMF machine. Well everyone thank you for all your information and thoughts. Thanks Lisa.
I will keep in touch
Michael
Mark
10 years ago
Hi at all,
Am I the only one reacting to Vitamin C?
I tried liposomal, normal vitamin c plus bioflavonoids (puritan pride) and nature made vitamin c.
I always get discomfort and slightly more pain and tingling in my tendons and feel a little drained.
I got Candida antibodies as well.
Can this trigger my reaction to Vitamin C?
If nobody else here gets a reaction to normal vitamin C (some do to the ethanol in liposomal vitamin c) mine must be something different I guess and not from the Cipro?
Mark
Mark
10 years ago
Hi,
My SMA is elevated to 1:400.
Anyone else had this?
The rest of my autoimmune parameter are normal except low ldh and high lipase.
Well my medical Doc thinks I have a rare from of Limes disease. So he is running that test as well. Checking if I have a high CRP level again. He wants me to see an infection specialist. I am pretty sure I was Floxed. I find it to much of a coincidence that this happened right after I took Cipro. Going to my natural doc too. He thinks I was floxed and more problems surfaced. The Medical doc says if I don’t get better he wants to send me to MSU and have them figure it out. Boy this has been a crazy ride!
Yesterday I visited my Chiropractor and feel I was actually listened to for the first time. He wasn’t surprised at all that the drs dont want to touch me with a ten foot pole. He examined me and said that my abdomen is full of scar tissue (still not sure how he can feel it lol) from the hysterectomy because I couldn’t heal properly due to the AB toxicity. He also said my body resembles that of a patient who has been in a bad car accident because my muscles, joints, nerves and intestines are so messed up.
I cannot find much info about Marcobid toxicity (aside from the typical medical sites which are pretty generic) and your stories are so similar to mine – I am wondering if many of you have also had these issues. It is so hard when a physician won’t actually deal with me. And quite frankly, I cannot bear another appointment.
Chiro is going to use very gentle massage to break up the scar tissue as well as gentle techniques on my joints, neck and back.
I have been taking Chelate minerals forever and still do. I also take D3 and B12. And I take a B Complex. Is there anything else I should be taking?
I gained about 15 lbs since all of this happened (all in my belly – and it gets bigger throughout the day even if I don’t eat) and cannot lose an ounce no matter what I do. It is VERY depressing and hard to deal with. I am ashamed to even be in a swim suit this summer. I just feel my body has been destroyed and there is nothing I can do. All in a matter of a few months. I just don’t know what to do.
Debs
10 years ago
Hi All, ( Particularly Laura, as cannot see anywhere to reply to your comment on Macrobid )
This makes me really angry when Drs say there are only so many antibiotics available to retreat UTIS . The are WRONG,this is an excuse, they are ( to be kind ) too busy but more often too lazy to bother to look any further than the usual suspects.
There are many antibiotics available , Laura PLEASE do not take MACROBID I am sure Heather here will tell you the same, It has the ADR of the risk off IRREVERSIBLE PERMANENT peripheral neuropathy exactly the same as the FQs, acute & chronic lung damage I have the ( looks like ) permanent PN & you do not want to go there believe me . Mine was so severe am now on opioid pain relief & even that only makes it just bearable.
Here is a list to consider , please avoid the Trimithoprim- Sulfa ( Bactrim alter egos ), any more information I can help with, please do not hesitate to ask. Consider reading the full professional information on MACROBID just to see exactly how dodgy that one is. We are damaged enough as it is .
There are 115 antibiotics in that list above, I am sure Drs could find one that they can use.
Jenny
10 years ago
Hello everyone, after my adverse reaction from cipro I’ve gotten another uti it’s pretty bad this time..they gave my macrobid is this ok to take? Some people say they felt like they had the flu afterwards ? And even read a comment about muscle aches :/ scares me any advice?
Peter
10 years ago
Well, it’s been 14 months now and sadly, my symptoms are at an all time worse. I’ve been completely crippled this last week, worth severe facial burning (nonstop) and extreme dizziness, foggines, etc. It’s miserable. I also still can’t fix my breathing from an ulcer in the nose, nor the ridges in my nails / nail problems that grow worse daily. This week alone has sapped any remaining hope. I don’t see a pleasant end in sight, just more days where I don’t want to get out of bed.
Rene
10 years ago
For Any experiencing Digestive issues….& or want or need assistance with eliminating toxicity…ACTIVATED CHARCOAL is a effective, safe, measure to use. The inorganic unwanted toxicity.
Pumping the stomach in a hospital will help to quickly remove large amounts of poisons. However, it does not reach beyond the stomach as charcoal does. As charcoal continues down through the bowels it picks up poisons that were not pumped out. Charcoal and the poisons are then eliminated together when there is a bowel movement.
Activated charcoal does not irritate the mucous membranes of the GI system. It is generally given as a black liquid drink. Multiple doses of activated charcoal can often be given if someone has swallowed large doses of long-acting, sustained release medication.
Charcoal has the ability to adsorb drugs in the enter hepatic circulation cycle (intestinal-liver circulation loop), significantly clearing them from the blood stream. Normally, the liver filters poisons from the bloodstream. These poisons are then added to the liver bile, and together they pass back into the intestinal tract for elimination. But it is possible for some drugs to be reabsorbed by the intestines and then back into the blood system before they are voided in the stool. Therefore, several days of repeated doses of charcoal is still a good treatment for poisons that may otherwise remain in the blood for a long time.
Take at bedtime with 400 mg Magnesium Citrate…(might produce loose stool) Charcoal adsorbs the intoxicant substance and its metabolites that are excreted into the small intestine by way of the bile duct, thus preventing their re-absorption. As we have noted, charcoal adsorbs drugs that diffuse back into the stomach and intestines. By neutralizing all these toxins, charcoal decreases the workload of the liver as well as the kidneys. While charcoal lightens the load on the body.
Can take as needed. Remember Activated charcoal is not a supplement and is not something you need to take daily. It is not putting anything in but taking the bad out.
SLURRY
To be taken internally by babies or those with sensitive digestion as in ulcerative colitis, Crohn’s disease, irritable bowel disease.
Stir 2 to 3 tablespoons of charcoal powder into a quart of warm water. Allow the charcoal to settle out then pour off the gray water into a baby bottle or separate glass.
It will greatly help your liver, kidney, bowel, intestine, colon and general all over health of your body. Once you have completed the detox, you can take Activated Charcoal once a week to help maintain an optimum level of health and rid your body of anything toxic you may have come in contact with.
Bentonite Clay may also serve to be a very helpful alternate option.
Jenny
10 years ago
Oh ok thank you. What worries me bad is I’m 6 weeks pregnant with a bad uti and my doctor is pretty much saying my adverse reaction was from the family of cipro, that this is different and I don’t know I’m gonna have a bad effect? Are they connected somehow? I mean has anyone taken cipro and had a bad reaction with macrobid too? Is this always the case? I just gotta know:( my whole abdominal is hurting because of the uti and I don’t want it to cause a misscarrage so I have to think fast..
Jenny
10 years ago
Ok so I’m reading a lot on d mannos and reading good things. I also read that early in pregnancy it’s ok to take it..but then there’s sites saying don’t take the chance. But read on a baby board that people had good luck with it in first trimester even throughout their pregnancy. I rather take that than macrobid or cipro!! I hear people had misscarrages after completing antibiotics like macrobid. Ugh
Curious, for those who had elevated liver enzymes, how long did it take for them to return to normal? And did they fluctuate for a while?
That is how we knew something was really wrong and that I wasn’t crazy as everyone was making me out to be. They have gone up and down and we are hoping they are down for good now. Test again in September.
Headed out to vacation now and it is so hard not to be filled with anger because I came even have fun in the water park or do much walking. I am 40 and feel 80. Very bitter.
Jimmy
10 years ago
Melanie, how ongoing had you been on the reigning before your flare up? And what symptoms are you experiencing exactly?
Jenny
10 years ago
Thank you guys!! I took some tylenol and drinking cranberry juice as much as I can stomach. I will try all home remedies like you guys recommended first later tonight gonna go buy the d-manoose and supplies and give it a day. I do have the macrobid at home still in its bottle never opened just got it yesterday, so if I do have flank pain and bad fever I will take it grudgingly 🙁 this sucks
And the only allergy I have ever had with Medicane was from cipro Debs
Jenny
10 years ago
Actually I might ask to be prescribed to something else if not I have no choice :l miscarrages aren’t fun
deana
10 years ago
Is it ok to get fillings in my teeth?? I can’t afford to have crowns done and I have my appt in the morning for a deep cleaning and to get one filled. I will still need two more after this one.
I had a very similar experience very recently but from Macrobid (different family of antibiotics, I know). I guess it’s even more rare but symptoms are pretty much identical. Dr referred to it as drug induced liver injury with peripheral neuropathy. It’s been hell.
I wrote about my story on my site, but it has swears 🙂 Short (filtered) version:
I had a hysterectomy in March. Needed to be cathed for a few days so doc ordered preventative macrobid for 2 weeks. (anyone else here have this from macrobid?) I knew something was very wrong. Shortness of breath, legs were reddish/purple, muscles and joints hurt so much, headaches, extreme exhaustion, metallic taste in mouth, elevated liver tests, dehydration (even tho I drank a ton of water) and upper right quadrant pain.
Went to ER. Called GP and surgeon. Talked to family and friends. Everyone said I was fine and just a slow healer. No one would listen.
Test after test crossed causes for elevated liver off the list. Drs had no clue. I finally started doing my own research and after reading a ton, I knew I had drug induced liver injury with peripheral neuropathy. I went to GI Specialist and he said he wished all his patients came in with their own diagnosis and concurred with all of my findings. He said it could take one year but should get better soon.
It has been over 4 months and my legs still hurt but not as constant as before. I have gained a ton of weight and cannot take off any no matter what I do. Drs don’t want to touch me with a ten foot pole and just offer to prescribe stuff (at same facility as all the docs who ignored me in the beginning). I made it clear I am not blaming anyone – I just want help.
Saw my chiropractor today who helped a lot by explaining things and figuring out a treatment plan. Because of the liver injury, I didn’t heal right and have a lot of scar tissue in my abdomen as well as nerve, joint and muscle issues. Never had any of this before. He also said the weight (which is all in the belly) is probably from backed up liver as well.
Anyway, like I said…it’s been an absolute nightmare. And I know it isn’t exactly the same – different med and all – but it is very hard to find anyone (even professionals) who can relate.
Well everyone I go in for more tests and last time I had a very high CRP. I really believe I was floxed when I took Cipro and now they think the initial infection may have cause reactive arthritis on top of it. I also took a 23andme test and I am going to a natural doc who is going to start me on PEMF machine. Well everyone thank you for all your information and thoughts. Thanks Lisa.
I will keep in touch
Michael
Hi at all,
Am I the only one reacting to Vitamin C?
I tried liposomal, normal vitamin c plus bioflavonoids (puritan pride) and nature made vitamin c.
I always get discomfort and slightly more pain and tingling in my tendons and feel a little drained.
Could this be from Chlamydia?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC270477/
(I got IgG Chlamydia Pneumoniae, so either chronic or an old infection)
I got Candida antibodies as well.
Can this trigger my reaction to Vitamin C?
If nobody else here gets a reaction to normal vitamin C (some do to the ethanol in liposomal vitamin c) mine must be something different I guess and not from the Cipro?
Mark
Hi,
My SMA is elevated to 1:400.
Anyone else had this?
The rest of my autoimmune parameter are normal except low ldh and high lipase.
Mark
Well my medical Doc thinks I have a rare from of Limes disease. So he is running that test as well. Checking if I have a high CRP level again. He wants me to see an infection specialist. I am pretty sure I was Floxed. I find it to much of a coincidence that this happened right after I took Cipro. Going to my natural doc too. He thinks I was floxed and more problems surfaced. The Medical doc says if I don’t get better he wants to send me to MSU and have them figure it out. Boy this has been a crazy ride!
Yesterday I visited my Chiropractor and feel I was actually listened to for the first time. He wasn’t surprised at all that the drs dont want to touch me with a ten foot pole. He examined me and said that my abdomen is full of scar tissue (still not sure how he can feel it lol) from the hysterectomy because I couldn’t heal properly due to the AB toxicity. He also said my body resembles that of a patient who has been in a bad car accident because my muscles, joints, nerves and intestines are so messed up.
I cannot find much info about Marcobid toxicity (aside from the typical medical sites which are pretty generic) and your stories are so similar to mine – I am wondering if many of you have also had these issues. It is so hard when a physician won’t actually deal with me. And quite frankly, I cannot bear another appointment.
Chiro is going to use very gentle massage to break up the scar tissue as well as gentle techniques on my joints, neck and back.
I have been taking Chelate minerals forever and still do. I also take D3 and B12. And I take a B Complex. Is there anything else I should be taking?
I gained about 15 lbs since all of this happened (all in my belly – and it gets bigger throughout the day even if I don’t eat) and cannot lose an ounce no matter what I do. It is VERY depressing and hard to deal with. I am ashamed to even be in a swim suit this summer. I just feel my body has been destroyed and there is nothing I can do. All in a matter of a few months. I just don’t know what to do.
Hi All, ( Particularly Laura, as cannot see anywhere to reply to your comment on Macrobid )
This makes me really angry when Drs say there are only so many antibiotics available to retreat UTIS . The are WRONG,this is an excuse, they are ( to be kind ) too busy but more often too lazy to bother to look any further than the usual suspects.
There are many antibiotics available , Laura PLEASE do not take MACROBID I am sure Heather here will tell you the same, It has the ADR of the risk off IRREVERSIBLE PERMANENT peripheral neuropathy exactly the same as the FQs, acute & chronic lung damage I have the ( looks like ) permanent PN & you do not want to go there believe me . Mine was so severe am now on opioid pain relief & even that only makes it just bearable.
Here is a list to consider , please avoid the Trimithoprim- Sulfa ( Bactrim alter egos ), any more information I can help with, please do not hesitate to ask. Consider reading the full professional information on MACROBID just to see exactly how dodgy that one is. We are damaged enough as it is .
)http://www.drugs.com/condition/urinary-tract-infection.html
http://www.drugs.com/condition/urinary-tract-infection.html
There are 115 antibiotics in that list above, I am sure Drs could find one that they can use.
Hello everyone, after my adverse reaction from cipro I’ve gotten another uti it’s pretty bad this time..they gave my macrobid is this ok to take? Some people say they felt like they had the flu afterwards ? And even read a comment about muscle aches :/ scares me any advice?
Well, it’s been 14 months now and sadly, my symptoms are at an all time worse. I’ve been completely crippled this last week, worth severe facial burning (nonstop) and extreme dizziness, foggines, etc. It’s miserable. I also still can’t fix my breathing from an ulcer in the nose, nor the ridges in my nails / nail problems that grow worse daily. This week alone has sapped any remaining hope. I don’t see a pleasant end in sight, just more days where I don’t want to get out of bed.
For Any experiencing Digestive issues….& or want or need assistance with eliminating toxicity…ACTIVATED CHARCOAL is a effective, safe, measure to use. The inorganic unwanted toxicity.
Pumping the stomach in a hospital will help to quickly remove large amounts of poisons. However, it does not reach beyond the stomach as charcoal does. As charcoal continues down through the bowels it picks up poisons that were not pumped out. Charcoal and the poisons are then eliminated together when there is a bowel movement.
Activated charcoal does not irritate the mucous membranes of the GI system. It is generally given as a black liquid drink. Multiple doses of activated charcoal can often be given if someone has swallowed large doses of long-acting, sustained release medication.
Charcoal has the ability to adsorb drugs in the enter hepatic circulation cycle (intestinal-liver circulation loop), significantly clearing them from the blood stream. Normally, the liver filters poisons from the bloodstream. These poisons are then added to the liver bile, and together they pass back into the intestinal tract for elimination. But it is possible for some drugs to be reabsorbed by the intestines and then back into the blood system before they are voided in the stool. Therefore, several days of repeated doses of charcoal is still a good treatment for poisons that may otherwise remain in the blood for a long time.
Take at bedtime with 400 mg Magnesium Citrate…(might produce loose stool) Charcoal adsorbs the intoxicant substance and its metabolites that are excreted into the small intestine by way of the bile duct, thus preventing their re-absorption. As we have noted, charcoal adsorbs drugs that diffuse back into the stomach and intestines. By neutralizing all these toxins, charcoal decreases the workload of the liver as well as the kidneys. While charcoal lightens the load on the body.
Can take as needed. Remember Activated charcoal is not a supplement and is not something you need to take daily. It is not putting anything in but taking the bad out.
SLURRY
To be taken internally by babies or those with sensitive digestion as in ulcerative colitis, Crohn’s disease, irritable bowel disease.
Stir 2 to 3 tablespoons of charcoal powder into a quart of warm water. Allow the charcoal to settle out then pour off the gray water into a baby bottle or separate glass.
It will greatly help your liver, kidney, bowel, intestine, colon and general all over health of your body. Once you have completed the detox, you can take Activated Charcoal once a week to help maintain an optimum level of health and rid your body of anything toxic you may have come in contact with.
Bentonite Clay may also serve to be a very helpful alternate option.
Oh ok thank you. What worries me bad is I’m 6 weeks pregnant with a bad uti and my doctor is pretty much saying my adverse reaction was from the family of cipro, that this is different and I don’t know I’m gonna have a bad effect? Are they connected somehow? I mean has anyone taken cipro and had a bad reaction with macrobid too? Is this always the case? I just gotta know:( my whole abdominal is hurting because of the uti and I don’t want it to cause a misscarrage so I have to think fast..
Ok so I’m reading a lot on d mannos and reading good things. I also read that early in pregnancy it’s ok to take it..but then there’s sites saying don’t take the chance. But read on a baby board that people had good luck with it in first trimester even throughout their pregnancy. I rather take that than macrobid or cipro!! I hear people had misscarrages after completing antibiotics like macrobid. Ugh
Curious, for those who had elevated liver enzymes, how long did it take for them to return to normal? And did they fluctuate for a while?
That is how we knew something was really wrong and that I wasn’t crazy as everyone was making me out to be. They have gone up and down and we are hoping they are down for good now. Test again in September.
Headed out to vacation now and it is so hard not to be filled with anger because I came even have fun in the water park or do much walking. I am 40 and feel 80. Very bitter.
Melanie, how ongoing had you been on the reigning before your flare up? And what symptoms are you experiencing exactly?
Thank you guys!! I took some tylenol and drinking cranberry juice as much as I can stomach. I will try all home remedies like you guys recommended first later tonight gonna go buy the d-manoose and supplies and give it a day. I do have the macrobid at home still in its bottle never opened just got it yesterday, so if I do have flank pain and bad fever I will take it grudgingly 🙁 this sucks
And the only allergy I have ever had with Medicane was from cipro Debs
Actually I might ask to be prescribed to something else if not I have no choice :l miscarrages aren’t fun
Is it ok to get fillings in my teeth?? I can’t afford to have crowns done and I have my appt in the morning for a deep cleaning and to get one filled. I will still need two more after this one.