posted
I wanted to check and see if anyone else has experience with having both. I was diagnosed about 12 years ago with Fibro - waste basket diagnosis my doc calls it. I am wondering if it has been lyme all along but, my symptoms didn't worsen until after I had my son 3 years ago. The past year and a half I have been plagued by odd symptoms that I am now attributing to the lyme diagnosis I got last fall. I have been on a couple of rounds of antibiotics and have had a negative lyme test but am convinced I still have problems with it.
Looking at the symptoms for lyme and fibro I wonder how, if you figure out you are without lyme from lack of symptoms, anyone with fibro can know it is gone?
Thanks for any advice you can give
Posts: 43 | From md | Registered: Sep 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have fibro caused by Lyme. I am at the point where sometimes I am symptom-free and sometimes I have flares. The fibro goes when the Lyme does.
Fibro is a wastebasket diagnosis, your doctor is right. It has a cause, and if you have Lyme, it's most likely caused by the Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I too was one that was diagnosed with fibro many years before I found out I had lyme.
In my case, when I didn't want to take all the perscription meds to help with the fibro pain, I seeked out a N.D. (One that has a medical degree, but specialized in this kind of medicine).
He said that fibro is a syndrome and you need to find the ROOT as to what is causing it. If you ask the dr. that diagnosed you with fibro how you got it, how you can fix it, blah blah blah, there are NO answers.
In my case, my N.D. went searching, so it was testing heavy metals, allergies and eventually Igenex for lyme.
I've been on treatment almost two years now and I can say that most of the time I have gotten off very easy with the fibro symptom to the point I thought I had it totally licked.
I was recently put on IV's and at this point, the fibro symptoms are flairing but I really believe it's herxing and WILL reverse.
So although the pain is very very real, there IS a reason you have fibro and you have to find out what is causing it. If you have tested positive for lyme, I would say that's a pretty good indictation.
Good luck.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Being on IV meds completely got rid of my fibro-type pain, so I hope that works as well for you.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
=====================
Why doctors who follow IDSA are not giving you the best of medicine (and this is just one reason):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
posted
Yes. 25 years diagnosed with fibromyalgia. Then when I found out I had Lyme, I treated with clindamycin 150mg 3-4x/day and all fibro pain went to zero in one week.
You need a good Lyme-treating doctor to do the Lyme meds with you.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I have had diagnosed fibro for over 20 years with symptoms for over 25. I'v been working with an llmd since January and am hoping I can rid my body of lyme.
Does anyone know of a short reference that links lyme and fibro? I started going to a fibro support group and I want to give them this info. I think they think I'm nuts. It know I have seen some but can't put my hands on it right now. Thanks.
-------------------- "His faithful love endures forever." Psalm 136 Posts: 189 | From MN | Registered: Dec 2007
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posted
Yes, me too. I have had severe FMS for 8+ years. I have had all of the testing possible done, tried every treatment from natural to traditional, saw every doctor from rheums to neuros, to pain specialists and PT, PMR, chiro, acupuncture, massage therapy, cranial sacral therapy...and on.
My FMS progressed as I continued to have a slew of symptoms- but all could be confirmed by other FMS'ers. My symptom list was not just severe pain and fatigue but 4 typed pages of other symptoms.
I just found out that I have Lyme about 2 months ago.
There is a doctor who treats FMS, based on his research of over 40 years and his theory of genetic FMS. He has given thousands of people their lives back, and therefore I believe there *can* be a genetic explanation for some people.
The Guaifenisen Protocol was developed by Dr. Paul St. Amand. I was on this protocol until I found out I had Lyme. It did have an effect on my body. So, I still wonder if I have two things going on, as I can't explain my body's reaction to treatment.
Also- I know of many other people who tried the protocol, found that they were not improving like everyone else, and then learned that it was because they had Lyme.
I assume it is fairly common for people who are told they have FMS to have Lyme.
-------------------- Amanda, Indy Just began Lyme treatment Posts: 19 | From Indianapolis | Registered: Jul 2008
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bettyg
Unregistered
posted
same here,
started 1st dx as mono/epstein barr virus; then cfs for 30-35 yrs. fibro 15 years ago
chronc lyme 39 yrs. this dec. 34 yrs. MISDIAGNOSED by 40-50 drs!
my fibro has NOT gotten any better w/abx or supplements!
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posted
I remember reading a blog on the internet where a Dr. had tested his Fibro patients and found out most had Lyme.
My LLMD believes Fibromyalgia is a diagnosis Drs give when they don't know what is going on.
As an infectious disease specialist, she looks for the root cause.
Diagnosed with Fibro 20 years ago, then CFS, then connective tissue disorder, (heart and brain issues also) Just found out its' been Lyme all along!
When you think of fibromyalgia, ask yourself...What is causing the fibro symptoms. An infection of your body by Lyme makes perfect sense.
Praying for your health and happiness.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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