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We have fibromyalgia
11 Replies
Connie - September 23

Robin1237, Please know most of us do not have Lyme Disease. We DO NOT have it. Your point has been shared.Thank you, and best of good health to you.

 

Robin1237 - September 24

Hi Connie -- Am curious at this point -- my fibro has completely turned out to be Lyme. And all the symptoms I read here are the same as Lyme disease -- it's an incredibly versatile illness, meaning it affects practically every body system via nerves and soft tissue. It knocks out the autonomic nervous system, so there goes sleep. It eats magnesium, so there goes our energy. Etc. So how do people with fibro know they don't have Lyme? I haven't asked people here whether they remember a tick bite -- I do, so I'm clear on that. Only 30% remember the tick that bit them. Others can get it from insect bites, and also it can be tranmitted transplacentally, meaning people can be born with it and symptoms show up later. We have family generations now with this. So how do people know whether their fibro is Lyme or not? Tests don't always show the bacteria, so my understanding is that a clinical trial of antibiotics can be tried to see if someone responds. I responded fantastically -- the fibro pain went to zero in one week when I took 150 mg clindamycin every 6 hours. Probably at least half the people who show up on the Lyme sites say they have fibromyalgia. So I'm still up for an informational discussion here, because I'm not convinced that fibro is something else. Does anyone have any other explanation at this point for all the various symptoms of fibromyalgia? Thx.

 

JJ1 - September 24

I think it is appropriate to suggest that people who have been diagnosed with Fibromyalgia should be screened for Lyme Disease (just as they should also be screened for Lupus, MS and rheumatoid arthritis), but to state that "you have Lyme Disease" based on a description of symptoms on this site is inappropriate. It is well documented that the symptoms are similar and it is also published that sometimes people are mistakenly diagnosed (and it goes both ways - sometimes people are diagnosed with Lyme Disease only to find out later it is Fibromyalgia), but there is no basis to state that EVERYONE diagnosed with Fibromyalgia really has Lyme Disease. In my case, I don't think this has ever been explored by my doctors, so I wil bring it up. Also, my symptoms are not very typical for Fibromyalgia (don't pass the tender point test) so I have reason to be suspicious of my diagnosis.

 

Robin1237 - September 25

Thx, JJ1 -- I actually don't know what else FM means at this point, other than Lyme disease, since it has turned out to be Lyme for me and so many others, and I recognize every symptom described here as a Lyme symptom. By the way, I found a book on fibromyalgia I was published in in the 90s. So I called as many authors as I could reach who were in the book, and they have found out they have Lyme disease. So does anyone have any other explanation for what FM is?

 

JJ1 - September 25

This explains what Fibromyagia is...http://www.fibromyalgia-sympt
oms.org/fibromyalgia_syndrome.html

 

skidoo - September 25

Or, more likely, "we have been told we have fibromyalgia". It is a diagnosis by a process of elimination. If Lyme has not been eliminated by your docs, then it is still a possibility. Not definite as Robin has been saying, but the sympmtoms are so much alike that it shouldn't be ignored!

 

Robin1237 - September 27

JJ1, the fibromyalgia symptoms listed are exactly the same as Lyme disease symptoms. There is a huge Lyme symptom list at www.anapsid.org. Scroll down and click on Lyme disease box at the bottom of the page, then under Index, click on diagnosis, then on Master Symptoms. Again, the bacteria inflame our nerves, causing all the varied nerve symptoms. They also corkscrew into our tissues, as they are like syphilis -- ie, spiral, called "spirochetes".. They are in our tissues and causing inflammation. This can both be tested for(www.Igenex.com) and it's also a clinical evaluation, best made by an LLMD -- ie, Lyme-literate medical doctor. The folks at www.lymenet.org help people find LLMDs in their area. All this was a huge surprise to me last year, and I am passing the word on.

 

skidoo - September 27

See link about a Lyme disease specialist doc who believes that Lyme is just one possible cause of chronic fatigue and fibromyagia syndromes.
http://www.canl
yme.com/fibrocfslyme.html

 

skidoo - September 27

It is thought that between 15% and 50% of those patients diagnosed with Lyme disease actually have fibromyalgia. It is important that you be tested for Lyme disease using a variety of different diagnostic tests, in order to rule out this disease. Long-term antibiotic treatment can result in serious side effects, and won’t do anything for your fibromyalgia symptoms.
http://www.fibromyalgia-s
ymptoms.org/fibromyalgia_lyme.html

 

skidoo - September 27

To make diagnostic matters even more complicated, a recent study conducted at the Tufts University School of Medicine in Boston found that some people have fibromyalgia triggered by Lyme disease. Of 287 people treated at a Lyme disease clinic during a three-year period, 22 had fibromyalgia associated with Lyme disease (Annals of Internal Medicine, 15 August 1992).
http://findarticles.com/p/arti
cles/mi_m0815/is_n161_v17/ai_12711458


 

JJ1 - September 27

That sounds more like people are being misdiagnosed with Lyme when they have fibromyalgia rather than the other way around. I still hope to find a doctor to test me for Lyme because I was never tested for it and it was never even mentioned as a possibility which I find odd since the symptoms are so similar.

 

Robin1237 - September 28

JJ1, I think the insurance companies don't want to pay for all the antibiotic treatment, and so are behind the stand-down by the infectious disease society(IDSA) and other medical societies to not recognize, diagnose and treat Lyme. There is a battle going on currently for standard of care fpr Lyme and coinfections. The doctors with ILADS(International Lyme and
Associated Diseases) specialize in recognizing , diagnosing and treating Lyme. The attorney general of Connecticut is currently suing the IDSA for violation of antitrust -- meaning their recent guidelines interfere with doctors' rights to diagnose and treat Lyme. We are fighting for our medical rights to be recognized and treated for what we've got. There's been an enormous cover-up of Lyme disease and co's and the fact that they are now a worldwide pandemic.

 

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