PS-Lyme disease is systemic, meaning it can affect many areas and systems in the body. (Heart, joints, skin, nervous system, ...)
I don't know if fibromyalgia is classified as a neurological disorder, but it can include neurological symptoms.
All of my Lyme tests were negative by the strict CDC-criteria. Dont_tick_me_off is correct that Lyme testing is a controversial subject in the medical community. The popular camp is the IDSA, while the smaller organization ILADS promotes broader testing limits for diagnosis and longer treatment.
The IDSA also does not acknowledge the existence of chronic Lyme disease. Instead, they claim we have acquired an ill-defined autoimmune disease, sometimes called "post-Lyme syndrome."
The longer one is sick with Lyme, the weaker the immune response to the infection. And it is the immune response, in the form of antibodies, that are detected in the tests. So many patients with long-standing Lyme test negative for it.
It is therefore extremely difficult to get a Lyme diagnosis in a late-stage case, or to find a doctor who will treat it.
I do not have a formal diagnosis of fibro, but Lyme causes a number of "fibro-like" symptoms. I've tried neurontin and Lyrica in the past, but they were not ultimately to my liking.
I'm less extreme than Dont_tick_me_off in that I don't believe all MS/fibro/CFS to be caused by underlying infections, but the overlapping symptoms and terrible state of Lyme testing and diagnosis surely complicate the picture and likely keep many from proper treatment.
I spent almost a year with a "maybe MS" label on me due to brain leasion on MRI, which Lyme can also cause. I also had an elevated SED rate and c-reative protein, which are markers of inflammation, causing my rheumy to lavel me "maybe lupus/RA." Others with Lyme can have weakly positive ANA, abnormal thyroid tests, low vitamin D (a common issue for anyone in North America), and other abnormal test results that again confuse the diagnositic picture.
In order to get a diagnosis and treatment, I had to see a so-called "Lyme literate" physician, or "LLMD." These doctors diagnose/treat outside of the IDSA guidelines, at risk to their licesences. As such, most do not accept insurance, so Lyme patients have the pleasure of paying out-of-pocket for appointments and/or treatment.
For me it has been well worth it, as I was able to resume full time work. My treatment, which is ongoing, has lasted more than 1.5 years. I didn't see real lasting improvement until about the 9 month mark.
It is my opinion, and thus to be taken with a grain of salt, that fibro/CFS patients carefully consider the possibility of chronic Lyme. Two excellent resources I'd recommend to interested parties are the book "Cure Unknown" by Pam Weintraub, and the documentary "Under Our Skin." The book, written by a scientific writer who suffers from chronic Lyme disease, details the standing controversy of Lyme disease in the US. The history of Lyme is interwoven with stories of people and families affected. The documentary follows several patients over the course of years, showing how sick they are from Lyme, how dismissive traditional doctors are of their cases, and ultimately, their improvement with long-term treatment.
Both the book & film have easy-to-find websites with a lot of free online content. The documentary is harder to come by, but the but is about $10 on Amazon or in many libraries.
PS-May is Lyme disease awareness month!
yeah.. all lyme testsd are negative! lol... read up on the controversy. I had 7 negative 1 indeterminate, false positive.. Most good Lyme Drs. will not go by the test results for treatment.
As far as I'm concerned (call me ignorant) but i belive Fibro, MS and CFS is caused by an infectious disease and as far as autoimmune.. thats a crock too. Isn’t Bb (Boreila Burdorgferi) only the smarts bacterial in the world??? Or is it another? I don’t know. But I do know that all fibro/mas/cfs patients should read up on Lyme and the Controversy behind the disease.
My "fibro" has been driving me NUTS in the last two days. My legs are just BURNING! and the pin prickles are out of hand!
I went to the eye doctor because of focus issues. She thinks the Lyrica is relaxing the muscles and causing this and advises me to wear my glasses more when this is happening or I am tired. She said I'd have to balance the benefits of Lyrica over this and for now will stay with the Lyrica as it is helping.
Fibro patient, right arm has a mind of its own when I try to relax it. Last night I thought someone was trying to pick my pocket until I realized it was just my right arm! I also have eye issues, mainly focusing. especially when I'm reading and then look up and try to focus on something across the room - big time pain because my eyes don't want to focus quickly enough.
Anyway, I take clonepin at night, Lyrica for the muscle pain and ibuprofen for the tension headaches, which seem to happen every day now.
To don't tick me off - I thought of Lyme too, but that test came back neg.
Lyme patient too. Body jerks and visual problems here!!!!
i take clonazepam and i take baclfen to stop my jerks ,i would not of thought her doc would give her clonazepam to stop jerks , thats more depression and bad nights, see if yr friend has baclofen that helps.
thank you very much for your reply.you mention that her symptoms seem to suggest a neurological etiology. does fribro and lyme not involve the neuro system?
I'm sorry to hear about your friend. It is thoughtful of you to ask on her behalf.
There are many complex illnesses that have overlapping symptoms. I do not have a fibro diagnosis but instead I have chronic Lyme, which causes a lot of fibro-like symptoms. The body jerks and visual disturbances suggest a neurological etiology, and your friend should consult a neurologist for an evaluation, if she hasn't done so already.
Some people with chronic illess do flare and remit, while others are more consistenly unwell. That is true in relatively better understood diseases such as MS, as well as in more puzzling diseases such as fibro. I'm not sure that the lack of a relapse/remit pattern can rule out fibro in your friend's case.
Because there is no definitive laboratory test for fibromyalgia, I would suggest that your friend not accept the diagnosis until all other conditions within reason have been ruled out.
I'm sure others here with more specific knowledge of fibro can add to this discussion.
Good luck to you and your friend!