It's good and important questions that you raise Athene.
I've decided to dig up this old thread instead of starting a new one. I've got some questions (which probably nobody knows how to answer)!
Does anyone know of a document or website giving a plausible differential diagnoses for Lyme disease vs. CFS? Either based on symptoms, or on blood parameters? I have Googled and only found contradictory garbage, unfounded assertions etc.
If you take a look at a random symptom list for CFS or a random symptom list for Lyme disease (stage III) and hold your hand over the title (where it says what the list is for), then it would be a 50/50 chance to guess which list belonged to which diagnosis.
Meaning: The symptoms are pretty identical.
The way the CDC use to prove that someone does not have lyme is to use a ELISA test. The test works good if you have been ill for a short time. But the test isn't validated for illness lasting over 6 months. So if you have been ill for more than 6 months, then you're out of luck...
Personally I think many with Lyme also have XMRV, and the likely immune suppressing effects of XMRV makes the body incapable of producing antibodies in a high enough quantity to be detected by the ELISA. This is for stage III, which takes normally a year to go into. I think XMRV is a huge enabler for Lyme (just like HIV is for many other diseases).
Is there any accepted version of the symptoms for either illness that has distinct symptoms? (e.g. Are joint pains part of the Canadian criteria for CFS for example, or could that be a clue to Lyme?)
The symptom lists for CFS are far from perfect. And some have a FMS diagnose together with a CFS diagnose, and which diagnose doctors chose are also based on "medical trends" (in lack of a better word). The thing which is very special is that with
ever other discovery of a widespread pathogenic microbe what used to be a syndrome is relabeled as a disease.
But this didn't happen with the discovery of lyme in 1982. I think it's a result of poor work.
The problems with lyme is sort of like a "perfect storm" in that the medical community finds out the following:
- People who have been sick for longer then 6 months have a more "unclear" immune response to the disease.
- People who have been sick for longer then 6 months does not recover of a short term antibiotics cure.
They conclude that it's because the diagnosis is more uncertain (because of the weaker immune response) and they conclude that an uncertain diagnosis is why people don't recover of the short cure.
The truth is, as I see it, that many have problems with producing antibodies after the infection has got a good grip, and I think the retrovirus recently discovered in CFS patients is widespread in lyme patients, and a prerequisite for getting serious symptoms from a lyme infection... (I think it's the XMRV which makes the lyme chronic, and I also think it's the XMRV which "camouflages" the immune response in lyme patients (they aren't able to produce enough antibodies for an ELISA to detect it - when they have reached the last stage).
Has Rnase-L cleavage ever been found as part of Lyme disease, or is that definitely a clincher for CFS?
It has never been studied. But I can bet my house, cat and car on it: I am sure that they'd find exactly the same results in
lyme patients as in
CFS patients.
Many thanks if anyone can give me any clarity on this. After a year of disastrous "treatment" for CFS I have decided to get tested for Lyme disease, kind of pinning my hopes on having some horrible spirochetes instead of an incurable virus.
Well, I got a lot of experience in the lyme realm. And what I can see is that most people get some 30-70% better. And some don't react to treatment at all (mostly those with ALS-like, or MS-like symptoms).
From the experience I have, those with Fibro-like symptoms are those who respond quickest. Personally I think it's because the joints are outside of the
Blood-brain barrier, so antibiotics can reach them readily. Neurological symptoms normally take longer to get to.
Testing for lyme is hard. It's just as hard to rule out as it is to confirm. In the US, you have IgeneX which uses a test that measures specific bands on the antibody response (instead of using an ELISA which is much more dependent on huge quantities of antibodies to be able to detect it).
There are many hypothesis why the ELISA don't work after 6 months. Another hypothesis (than XMRV inhibiting antibody production) is that in stage III there are much more antigens in the body, and the antigens attaches to the antibodies. So you cannot find large amounts of antibodies with the ELISA (but you can find immune complexes, which is a merged antibody and antigen). Immune complex tests aren't commercially available yet.
Anyway, treating lyme is expensive. And in most cases it takes months to get better. And few recover completely with todays treatment regiments.
Personally I think lyme in stage III in most cases is XMRV + Borrelia. And not just Borrelia.
It puzzles me that so many get lyme, and the body handles it well. But with some all hell breaks loose. I think it's those who have a asymptomatic, or fairly asymptomatic XMRV infection to begin with.
Personally I think XMRV stands for some thirty percent of the symptoms of CFS. And I think large portions of the CFS community have a spirochete infection. But with todays tests it's impossible to confirm or rule out. Because the tests only go on a indirect response (the immune response), so even if you find something, it can be called "an old infection" which is no longer relevant.
It's first when we've got a good PCR for stage III lyme that we could see what the real prevalence is...
lum Island. VERY enlightening book, but I have never lived anywhere near there. My testing by an alternative doctor showed that I reacted to the Lone Star Tick, not the Ixodes Scapularis found in the east. I am pretty sure I was bitten in the Ouachita National Forest in Arkansas, but my immunity was good enough to keep it at bay until I came down with CFS 7 yrs. later in Florida.