How many people have been ill with CFS/ME for over 20 years?

[soxfan]

I had Lyme first (2004) was not treated for 2 years....had remission for 8 months and then declined again. I now believe the Lyme was the cause of my CFS. The symptoms I had with Lyme were different than what I experience now...the fatigue is different as well.
I consider myself sick for 10.4 years....

 

[CantThink]

I had Lyme first (2004) was not treated for 2 years....had remission for 8 months and then declined again. I now believe the Lyme was the cause of my CFS. The symptoms I had with Lyme were different than what I experience now...the fatigue is different as well.
I consider myself sick for 10.4 years....

Thanks for posting this - as I find it interesting to hear about Lyme alone versus M.E. (on another thread there was a debate about whether Lyme has PEM as part of it, which I was reading).

 

[soxfan]

Honestly in my opinion Lyme does not have PEM as in CFS. I was very sick with Lyme for about 4 years before I went into full remission of the illness. I never had PEM as a symptom during this period of time. I will say that I would get very tired if I was doing too much during the day and would have to rest but it never carried over into the next day and I never had delayed reaction.

Now that I am 99 percent positive I have developed CFS due to the Lyme I definitely have PEM when I have too much mental activity. I feel that my brain/mental capacity has diminished greatly in the past few years. I have a very small tolerance to mental stimulation which for me is mostly social/shopping/etc. I have no problems with reading or watching a program on television.

I was seeing a well known Lyme doctor and he told me he just never really saw many of his patients with PEM. We all definitely had exhaustion and tiredness but was not considered PEM.

That is one of the main reasons I believe I now have CFS with the Lyme being eradicated from me....through years of antibiotics and herbals.

 

[CantThink]

@soxfan

That makes sense - a lot of illnesses/diseases contain an element of fatigue but it is the nature of it that distinguishes fatigue/tiredness/exhaustion from PEM.

 

[RosieBee]

I think one of the things behind this would be elevated levels of the cytokine interleukin-6. Here is one study that found elevated levels of interleukin-6 in ME/CFS. http://www.journalofpsychiatricresearch.com/article/S0022-3956(96)00063-5/abstract
The presence of IL-6 can lead to reduced cytotoxic function of the cells that attack virus infected cells (CD8+T cells). Research has demonstrated that CD8+T cells that are activated in the presence of IL-6, develop into cell types (Tc17 cells) that display greatly suppressed cytotoxic function.

Thanks @Annesse for that reference - Interesting about increased IL-6 reducing cytotoxic function. I wonder if that also would suppress the immune response to lyme disease? After more than 20 years of ME I got bitten by ticks and had a big reaction (especially bad cognitive problems, strangely different from ME cognitive problems) that I am still battling with. Reading about how Lyme Borellia bacteria adapt to living undetected in the host, if the immune system is malfunctioning then the bacteria can roam pretty much where they want. May explain why Lyme and ME are often found together.