80% of CFS sufferers have Lyme? Is this true or an exaggeration by LLMDs to make money?

[leokitten]

I believe that one of the hallmarks of ME/CFS is a compromised immune system, with low NK cells amongst other things. I see the Lyme as another opportunistic bacterial infection in this situation. At the moment, I am being treated for Lyme with long-term abx and I have seen considerable improvement. I don't necessarily think that this will cure my underlying ME/CFS.

Excellent point, this is another way of looking at it.

I was looking at it from the perspective that possibly Lyme could have been the initial insult, it is well documented that the bacteria is not necessarily opportunistic, that it works to actively damage and suppress your immune system, and then over years of subclinical unnoticed damage that it is causing your immune system gets to a point where ubiquitous viruses see an opportunity to reactivate and other opportunistic infections living silently in your body wake up causing further immune system damage and throwing a person into full ME/CFS.

So then it is vitally important to find out whether you have Lyme or not because if you are treating all of the other infections they will just come back if Lyme was the initiator.

But your way or looking at it is also plausible!

 

[helios]

@SickOfSickness I think the other lab you are thinking of is infectolabs, which does a different sort of lyme test than other labs. It is in Germany, however, so shipping blood there can be expensive and unreliable for those of us not in Europe.

I thought the EU labs and the US labs test for a different strain of lyme. To me, if you live in Nth America and suspected lyme and sent your blood to be tested in Europe you would likely come back with a negative result. Can someone correct me if I am wrong please.
I had my blood tested by IGeneX and came back with a positive result. I have been to Europe but not North America. Like the OP I have the same concerns. In my case though I see a reasonably priced 'tough case/CFS' doctor and not an expensive LLMD and testing for lyme was a bit of a last ditch effort to find a cause. Still I hate the controversy surrounding the diagnosis and wish it was clear cut like say a diagnosis for rickettsia.

 

[barbc56]

@helios, I remember reading the same thing. I will try and find where I read this.

 

[vamah]

I thought the EU labs and the US labs test for a different strain of lyme. To me, if you live in Nth America and suspected lyme and sent your blood to be tested in Europe you would likely come back with a negative result. Can someone correct me if I am wrong please.
I had my blood tested by IGeneX and came back with a positive result. I have been to Europe but not North America. Like the OP I have the same concerns. In my case though I see a reasonably priced 'tough case/CFS' doctor and not an expensive LLMD and testing for lyme was a bit of a last ditch effort to find a cause. Still I hate the controversy surrounding the diagnosis and wish it was clear cut like say a diagnosis for rickettsia.

That would certainly make sense. I will have to cbeck what strains of lyme the different labs test for.

 

[filfla4]

One of the leading labs in Europe for Lyme testing is Infectolabs http://www.infectolab.de/ This lab is associated with the dedicated Lyme treatment clinic in Augsburg, Germany http://www.b-c-a.de/ which is headed up by Dr Armin Schwarzbach. Anyway, a few days ago I was listening to a radio interview with him which is about 7 months old. It's very long (almost 2hrs) but at 80.20mins Dr Schwarzbach mentions that he is collaborating with Prof De Meirleir and he states that De Meirleir is finding Lyme in 90% of his ME patients.

You can hear the interview here: http://www.blogtalkradio.com/in-short-order/2013/05/12/in-short-order--dr-armin-schwarzbach