posted
Thx, Betty!! And to a couple others here who've gone to the site and responded, thank you to you too.
I'm still recommending that those who've presented with fibro symptoms go to the site and respond. It's basically saying FM is a real medical entity to be treated with Cymbalta and 20 upcoming drugs.
A doctor is quoted as saying 20% of his rheumatology patients (in Danbury, CT) are presenting with FM, and that 5% of the general population has it.
My understanding is that fibro is Lyme. Am I correct in that assumption? I know that mine turned out to be Lyme, plus I've checked with fibro patients I knew from the past and they've since come in with a Lyme diagnosis plus many with co's.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
What about people diagnosed with CFS and not Fibro? Can Lyme cause only CFS symptoms?
Posts: 103 | From New Jersey | Registered: Jun 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yes, lyme can cause CFS symptoms as well.
CFS is a diagnosis that has no actual testing, same as Fibromyalgia... so many, many people with (most usually) lyme are told they have Fibro or CFS because it fits our symptoms or many of them.
It's too bad that people out there are getting these awful diagnoses and having to suffer years or even the rest of their lives thinking there is no cure out there... when if they really have lyme, there is treatment and a cure (or remission) possible.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I cant let go of that CFS diagnosis. Its all I think about even though I just recently received a positive Babesia test. My LLMD does feel that I have Lyme but it is possible to be infected with only Babesia and not Lyme. I really hope that this is not the case for me but who knows.
I was so happy to get that positive Babesia test because it made me feel at that moment that Lyme was my problem, and that I could get treatment and eventually get my life back, now I am back to doubting that because I cant help it. I've been looking up CFS info all week and I've read of people having both Lyme and CFS.
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Mike,
you say you been reading about people having both Lyme and CFS.
Well, of course. Lyme CAUSES CFS. Treat the lyme (or other infections) and the CFS will be no issue, in many cases.
CFS is a constellation of severe symptoms - many of the same symptoms as lyme and co. Treat the cause(s). That may be more than just with abx but by now, I'm sure you've read how complex any TBD (tick-borne disease) treatment is.
It takes time. It is a process.
And, here are some other chronic stealth infections that most LLMDs consider:
quote:Originally posted by llelnino: What about people diagnosed with CFS and not Fibro? Can Lyme cause only CFS symptoms?
I understand many of us get told we have FM, many get told it's CFS, and many get both diagnoses. Maybe the different presentations are due to many different Lyme strains out there. Also, CFS might be more than Lyme? Like including other viruses too? And what if there's mycoplasmas thrown in the mix too?
Posts: 13171 | From San Francisco | Registered: May 2006
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I feel this way I have a positive Babesia test and I've been told false positives are very rare. So I'm pretty sure Babesia is part of my problem and also since I've never had a blood transfusion that means that I had to have contracted Babesia through a tick bite so that is what is keeping me going that maybe I contracted Lyme as well.
Posts: 103 | From New Jersey | Registered: Jun 2008
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posted
Although I don't doubt that many, many cases of diagnosed CFS are actually Lyme, there does appear to be a completely separate disease entity that caused the epidemic outbreaks of CFIDS. There are some specific biomarkers that we lyme folks generally don't get (particularly a defect in a specific antiviral pathway , and a particular disruption of the cd4/cd8 ratio).
The general consensus in the CFIDS community is that there's largely a viral component to the illness, and a wholesale disruption of the immune system. Mycoplasma shows up in a lot of these folks too, but it isn't clear if that is a causal agent or merely an opportunistic infection. Obviously, in those cases, antibiotics are helpful to treat the myco. Unfortunately, there are a number of diseases out there that mimic one another, and very few doctors do the diagnostic testing to differentiate between them (the testing is expensive!)
As for "fibromyalgia," my guess is that it is Lyme more often than not.
I haven't met one single chronically ill person who got more than minimal relief from Cymbalta, btw. I take it, and it does help with certain things (mostly sleep and the tendency to panic), but it is far from being the answer to my pain.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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