Compile the % of PWCFS/FM/etc. with Lyme

[Hanna]

I have been suffering for the same number of years as you. In my case during the first four years I had a recoveries and relapses then -after an EBV infection- my illness became stronger and without recoveries.

My EBV IgG antibodies disappeared after some months and I'm now investigating this issue with an immunologist, after some personal studies in Immunology and Immunodeficiencies.

Did you mesure your EBV IgG recently?
What kind of test did you do for Lyme?

Thank so much for your kind attention, Hanna.

@paolo , recently I had my blood tested for EBV once again, but the lab didn't measure IgG, nor Ebna... just IgM which were negative. Too bad that even the minimum isn't done here.

About lyme testing :
1. I had a positive ELISA in IgM (58).
2. Western Blot returned 'negative', but without any detail, so I can't trust the lab in any way. Would have liked to see the results per bands (IgM and IgG), and also don't know which category of borrelia was teated.
I am from Europe, so the borrelia burgdorferi that is the standard in the USA and also here (as a result), is not sufficient, because of the prevalence of the afzelii, garenii etc sorts.

 

[paolo]

@paolo , recently I had my blood tested for EBV once again, but the lab didn't measure IgG, nor Ebna... just IgM which were negative. Too bad that even the minimum isn't done here.

I guess that only IgM testing is not useful for EBV reactivation. According to Montoya you have to consider the numeric value of VCA IgG, and if it is above a cut off value, than you can speculate that you have a reactivation of this life long companion of ours lives.

About lyme testing :
1. I had a positive ELISA in IgM (58).
2. Western Blot returned 'negative', but without any detail, so I can't trust the lab in any way. Would have liked to see the results per bands (IgM and IgG), and also don't know which category of borrelia was teated.
I am from Europe, so the borrelia burgdorferi that is the standard in the USA and also here (as a result), is not sufficient, because of the prevalence of the afzelii, garenii etc sorts.

If you are IgM positive (ELISA) and Western Blot negative, you are CDC negative for borrelia. But you can be CDC negative and still have an ongoing infection with borrelia. Seronegative borrelia infection does exist: I am seronegative but I have a positive PCR for borrelia burgdorferi sensu lato. So I'm infected. You can read these articles about this issue:

http://www.nejm.org/doi/full/10.1056/NEJM198812013192203
http://www.ncbi.nlm.nih.gov/pubmed/12189466/

 

[roxie60]

SERg have you compiled data yet?

 

[paolo]

Do any of you have news about the lecture prof De Meirleir held yesterday in Nevada? It was about Lyme disease.

 

[roxie60]

I would be interested in that presentation as well

 

[Helen]

@paolo and @roxie60
Quote from WPI on FB:

• Whittemore Peterson InstituteDr DeMeirleir has requested that we not live stream his talk as he has included unpublished data in this presentation. We will do our best to summarize the information for you as soon as possible. We truly apologize for this inconvenience.
  Thank you
  Annette Whittemore