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Antibiotic therapy for Fibromyalgia

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Posted 10/29/2008 2:57 AM (GMT 0)
Anyone?
Posted 10/29/2008 5:46 AM (GMT 0)
I've never heard anything about it being bacterial. I'm pretty sure I've taken antibiotics since I got fibro and not noticed a difference, though it wasn't a regimen so who knows.

Lyme IS treated with antibiotics, and is often confused with fibromyalgia. So it is possible that the antibiotics helped the Lyme and what's left is the fibro.

I personally doubt that fibro, at any rate, is bacterial. That would imply that we'd all "caught it" somehow. I'm pretty sure that researchers would have noticed by now if there was a way to "catch" fibromyalgia. Granted, we don't seem to have it from birth, but I think of it more as a developed condition. For instance, you don't "catch" diabetes or cancer or allergies.

But what do I know, I have zero medical education. *shrug* If it helps, I see no reason not to do it.

-Sandi
Posted 10/29/2008 11:32 AM (GMT 0)
KeepHope, it is not a proven fact that these illnesses are "based on bacterial agents."  If doctors really knew what was causing fibromyalgia it would be all over the news and all of our doctors would be treating us with antibiotics.  Look what has happened since the FDA gave the nod to Lyrica!  All of our doctors want us to try it.  That would have happened if antibiotics really helped fibromyalgia.

 

As Libertykitty mentioned, your Lyme is probably being helped with the antibiotics and that's why you are feeling better.  I'm glad about that. 

 

I know of people that are having yeast and other problems because of taking too many antibiotics.  We have both good and bad bacteria in our bodies and antibiotics don't know the difference and kill all bacteria...at least that's my understanding.  Also, I would be cautious because I know I wouldn't want to build up a resistance to an antibiotic that could protect me from a bacteria that could kill me.  They are now thinking that, because too many antibiotics are given out, these superviruses are now occuring.  Just my humble opinion.

 

Sherrine

Posted 10/29/2008 1:10 PM (GMT 0)
Are you talking about Garth Nickleson theory Deb??? We had a thread on this not too long ago. That the bacteria could be deep in the walls of the white cells or something like that. Jeannie started the thread.

 

I have a couple theories to talk to my rheumy about today.

 

luv and hugs

Marlee

Posted 1/6/2010 7:31 AM (GMT 0)
Sherrine, I don't think it is as simple as saying that FM is not bacterially based, and therefore antibiotics are not the solution. I suspect FM is a constellation of problems that get lumped into this title - some of which COULD be bacterially based, even if not Lyme disease. Or, as you and others have noted in other threads, FM could be a misdiagnosis of Lyme disease or something (that does respond to antibiotics.)
All I know now is that
1. we had to go to Mayo to end up with the FM diagnosis after the battery of testing
2. Their suspicion of causes was in accordance with the NIAMS website info (they even gave that to us) that you refer to from Chutz.
3. The respective treatments: antidepressants, SSRI, etc. have done NOTHING (in my wife's case) to alleviate symptoms...
When the respective treatments do not work, then perhaps the suspected causes/diagnoses are wrong, and maybe antibiotic courses - or antifungal in the case of systemic yeast overinfection - are worth trying. As you say, they don't know the cure, but perhaps partly because this is a constellation of different diseases. What I've found over the year of surfing the web is that anecdotally, different treatments have helped different people.
Furthermore, criticisms of antibiotic treatments point out that A. they kill good bacteria too, B. they could lead to catching a resistant bacteria. Well, they seem to always be prescribed with probiotics to restore good bacteria simultaneously. In many cases they are prescribed at low doses, not high doses, but for long times. Furthermore, in some theories bacteria such as chlamydia are proposed and therefore specific antibiotics are used that tend not to wipe out other classes of bacteria. Finally, as to B), the FM is getting so bad that the risk of developing some other serious infection may be less than the benefit of ameliorating the FM.

The ruling out of some causes could be hasty and arrogant. My wife remembers the days years ago when western doctors scoffed at the notion of food sensitivities, but now celiac disease etc is well accepted and causes like a lack of this or that enzyme is well accepted.

Another observation: I've known my wife long enough now to see that she does indeed respond better to eastern/holistic medicine better than western medicine (e.g., Lyrica and many others) - which is just a caution that "your mileage may vary"=individuals respond differently from the AVERAGE response seen in any clinical study.

Clinical studies on antibiotic treatment or any other treatment are most welcome (for me that is the
"proof")...but one must ask, which disease or syndrome was really relieved in each case? I am not sure that any given trial group is truly known to have the same disease ("FM"), at this early stage.
Posted 1/7/2010 9:45 PM (GMT 0)
I had a pic line this summer with iv antibiotics. I felt a little better than I do now, but I think that is because it was getting rid of my Lyme. Now I'm stuck with a arm that has pain that comes and goes where the pic line was.

Heavy antibiotics, but it sure didn't cure my fibro.

Posted 1/7/2010 10:21 PM (GMT 0)
From what I've heard, Lyme can both mimic fibromyalgia AND trigger fibromyalgia...? Same with autoimmune diseases. This makes things VERY confusing if you're like me and have tons of dxs.

BTW, FibroSpouse is right in that we shouldn't be hasty to dismiss possibilities.

As a scientist, I ask myself the question: If Lyme can trigger/mimic fibro, is it possible that there is some other as-yet-unidentified disease-causing agent out there that is capable of the same thing?

The answer: Sure it's possible. Anything is possible that doesn't actually violate the physical laws of the universe.

For me, I suspect that Lyme triggered my fibro, because the standard treatments (antidepressants, Lyrica) HAVE helped my pain. But apparently I also have Lyme. I hope to be successfully treated with antibiotics and get rid of the Lyme....so I will eventually feel better than I do now. :)
Posted 1/7/2010 10:37 PM (GMT 0)
P.S. Lyme may have triggered my lupus, RA, and autoimmune hepatitis too! It could explain the incredible EXPLOSION of diagnoses I've had in the past two years...... :(
Posted 1/7/2010 11:17 PM (GMT 0)
I had lyme before fibro and cfs. I did abx for 2 years. I am alot better but still suffer chronic pain.
Posted 1/7/2010 11:45 PM (GMT 0)
First of all, FibroSpouse, I didn't say that fibro is not bacterially based.  I did say that it is not proven to be bacterially based.  I do keep an open mind and I don't like to have words put in my mouth.  I also haven't ruled out anything so I don't like the "arrogant" comment either.  I am a volunteer and try to give the best information I can on this forum so I do take offense at things like that.

 

I only know that the learned doctors that are studying this illness are leaning towards it being a neurological problem.  We still don't know yet.  I also know that taking a lot of antibiotics, unless absolutely necessary, can cause problems, too.  We can build up an immunity to these drugs and bacteria can mutate and then we won't have anything to fight them off.  There is a very bad staph infection called MRSA that has killed many people and they are having problems fighting it off.  In Norway, though, they don't have that problem.  Why?  They don't give out a lot of antibiotics.  Below is a link to that article.  

 

 Click here: Solution to Killer Superbug Found in Norway - Sphere News

I think antibiotics are wonderful and when I have had walking pneumonia and things like that, they have been a life saver.  People that have Lyme are greatly benefited with antibiotic therapy to kill off the bacteria.  It has been scientifically proven that antibiotics kill off the infections in their systems.  BUT, this is not the case with fibro...at least that we know of right now.  I do think we need to be careful about taking a lot of antibiotics because it could come back to haunt us.  If it is proven that fibro is caused by bacteria, I will be first in line for antibiotic therapy.  But until that happens, I will stand by my original post.

 

I hope your wife will feel better soon.

Sherrine 

Posted 1/14/2011 6:48 PM (GMT 0)
I had surgery to (what they thought would help the pain) and then was diagnosed with Fibro.  I will tell you though the week that I was getting IV antibiotics was great and I felt better for 6 weeks then the pain returned.  I wonder huuuummmm.
Posted 1/14/2011 8:16 PM (GMT 0)
I had/have an infection in my jaw/tooth that has been active for over 3 weeks. I have had two root canals, oral surgery to clean out the infection and 3 rounds of 2 different antibiotics. The only thing I noticed good was that the infection is going away (slowly) and the only thing I noticed bad is that the meds are making me sick. But the fibro is still there!

This is my take: I have fibromyalgia. some days I have mild aches and pains and hardly need any meds and some days I can barely function and take lots of meds. But, because I have fibro doesnt mean that I may never have anything else. Perhaps it is these "other" things that respond to the anibiotics, not the fibro. I take it one day at a time and I do the best I can to treat my symptoms as they come. All I know is that everyone has different degrees of symptoms and everyone treats these symptoms differently. If a round of antibiotics makes you feel better and you can get a doctor to keep prescribing them then that is what you have to do.

I also feel strongly that if you ask others opinions on a sensitive subject you should be prepared to receive many differences in those opinions without berating any one person for them.
Posted 1/14/2011 8:56 PM (GMT 0)
I meant no disrespect.  I love the opinions of others!!!!  It is what helps us all get through the day.  I guess my problem is that I cannot get over the fact that they can not do anything about this problem.  I wish so hard for the day when all of us whom have this terrible thing (FIBRO), can be cured once and for all.  Thank you so much for your response it helps me to understand more.  Do you have any gastro issues with your fibro?  The dr's want me to have Nissen Fundoplication because of my GERD issues.  I also have to have surgery on both feet for Plantar Flaschitis soon.  I hope that it may get better afterwards.   

Posted 1/14/2011 10:50 PM (GMT 0)
I got very sick over 20 years ago and it took about a year to get diagnosed. Looking back, I think I could have just as easily have been diagnosed with fibro but I was diagnosed with Lyme Disease.

I took antibiotics on and off for four years for the Lyme Disease. The drugs helped a lot and allowed me to function. Eventually, the antibiotics stopped helping and I didn't get any worse when I stopped so at this point, I was considered either in remission or cured of Lyme.

The leftover pain and fog was then called fibromyalgia. I've taken antibiotics a few times since and while they cured whatever infection I had, they neither helped nor hurt my fibro symptoms. Had I originally been diagnosed with fibro, I wouldn't have been offered the treatment (antibiotics, including IV) that allowed me to function.

I was "lucky" enough to get Valley Fever a few years ago and the treatment for that is antifungals. When the Valley Fever symptoms went away, I still had the fibro symptoms.

Fortunately for me, I tested positive for Lyme through the regular labs so I got diagnosed and treated. The test is not very accurate so many people test negative and may miss out on treatment. I wish there was a really accurate test so that everyone will know whether or not they have Lyme.
Posted 1/14/2011 11:14 PM (GMT 0)
Charlibaby, you weren't disrespectful at all!  Don't give that a thought, okay?  By the way, welcome fo the forum!

 

I have had to take antibiotics for illnesses and have never seen it help with pain.  Everyone is different in how our bodies respond to things.  But, most likely, anyone that got relief from antibiotics was really getting relief from something besides fibro going on.  This is just my opinion.  I'm not a doctor either.  Our symptoms are so varied and it is so easy to blame any pain, discomfort or weird symptom on fibro.  After all, the doctors do that!  That's because they don't know what is causing this illness...yet.  But the good news it they are working on it now!  Yea!

 

Sherrine

Posted 1/15/2011 3:34 AM (GMT 0)
I don't know anything about the antibiotics this is the first I have heard about it. I would like to welcome you to the forum charlibaby. This is a great place for venting as well as gathering info and advice. I do have lots of gasto issues with this disease. One of my first symptoms was ibs (irritable bowel syndrome) the slowly they came hitting hard. I also have ulcers that bleed often and have had to have my esophogus stratched...they are thinking about having to do it again. My gp as well as my fibro dr said stomach issues are definately a synptom. It would make sense because your stomach has lots of muscles around it and if you can have pain and difficulties with muscle spasms and then why wouldn't it be possible for the stomach and colon to spasm. That's just what I've been told. Again welcome charlibaby and hope you find the answers you are looking for. =)
Posted 1/17/2011 10:16 PM (GMT 0)
charlibaby,

I would like to clear the air and tell you that my comment about opinions was not directed at you but to an early comment on this post. I do apologize if you took it that way.

Glad to see you here but not for the reason and hope to hear more from you in the near future.
Posted 3/7/2012 6:31 PM (GMT 0)
New here.. have diagnosed Fibro mainly in [both] legs from hips to knees and neurapathy in lower [both] legs.. countless remedies tried.. take neurontin and cymbalta and guess both help some. Home remedies do not come close. Recently had respiratory infection that was quite severe. Prescribed cortisone and Augmentin [1700 units daily]. Amazingly leg pain dipped dramatically. Neurapathy pain decreased only very slightly.

Not sure if I should enter the discussion on whether antibiotic do or do not aid fibro.. hoping pain relief will be lasting regardless it is sure welcome right now.

Would be tickled to death to accidentally find relief from 24/7 pain.. if anybody can add to this with long range implications it would be appreciated
Posted 3/8/2012 1:39 PM (GMT 0)
Hi, dickyru, and welcome!  I'm so glad you found us and joined in.  I have never heard of fibromyalgia being diagnosed with just leg pain.  Fibro affects all four quandrants of your body.  Nearly all of us have neck, shoulder and back pain.  Yes, our legs can hurt too in addition to that.  I think I'd get a second opinion just to be sure.  I'm not a doctor but it sure wouldn't hurt to have another opinion...just to be sure.

 

Also, fibromyalgia is not an inflammatory illness.  Cortisone helps with inflammation so I would suspect that you are dealing with something else in your legs if they were helped that much.

 

Actually, I'm going through something like that right now.  I've used ibuprofen for decades for my fibro but then developed an ulcer so I can't use that now.  I'm now in a ton of pain.  I have been seeing a rheumatologist and he said that ibuprofen should not have helped me like it has and now they are discovering that I not only have fibro but also another auto immune problem.  So, I would suggest that you see a rheumatologist and be checked out.  Fibro has many of the same symptoms as other illnesses and those have to be ruled out first.

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links for you are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  See if you seem to fit in what you read.  I'm just going by what you have written in this post.

 

Why don't you start your own thread and introduce yourself!  When you come on the forum brand new, people can miss seeing that you are here if you just post on an existing thread.  We have wonderful members that would love to help you.

 

I'm looking forward to getting to know you better.  Let us know what you find out.

 

Sherrine

Posted 3/8/2012 6:50 PM (GMT 0)
It may just be my opinion but some antibiotics can cause cns problems similar to fibro.....floroquinilones are hard on the tendons and central nervous system.
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