Lyme Disease and XMRV

[Lesley]

My daughter and I were recently diagnosed with Lyme disease. I have been struggling with the question of how Lyme relates to CFS, and whether we really have CFS at all. I came across this on the Columbia University Medical Center website:

A fascinating and potentially very important study has recently come out in the journal Science. The study reports on the discovery that 68% of patients with Chronic Fatigue Syndrome (CFS) carry the XMRV virus as compared to 3.7% of those without CFS. Further work reported in the New York Times indicates that the virus has been found in 98% of patients with CFS. The discovery of this retrovirus, if confirmed by other research groups, suggests that this virus is either the cause or an important secondary factor in CFS. This finding has implications for Lyme research as it is possible that patients who carry this virus when co-infected with Lyme go on to have persistent symptoms because: a) of activation of the latent virus; b) infection with Lyme or another tick-borne disease lowers the immune surveillance making the individual more susceptible to "catch" the virus; or c) the presence of the virus and the spirochete together act synergistically to induce an array of illness symptoms or to prevent eradication or control of either organism. In any case, given that the symptoms of CFS are so similar to the symptoms of patients with chronic persistent Lyme symptoms, especially shared problems with fatigue and cognition, research in this area may shed important light on the mechanisms underlying the perpetuation of chronic symptoms. In terms of treatment, if this virus is thought to be causal, then retroviral treatments that are used for treating HIV may be very helpful for patients with chronic persistent symptoms.

I found this interesting because it comes from a Lyme doctor. The only comments I had heard about Lyme and XMRV prior to this were from Dr. Mikovitz. I believe she indicated at some point that 30% of Lyme patients they tested were positive for XMRV, and that treating both the Lyme and XMRV might be necessary.

For now, we will proceed with Lyme treatment, and follow the developments on XMRV carefully.

The quote is here: http://vesta.cumc.columbia.edu/lymedisease/news/user/featNews.php?sel=newsFeat The website is a good source of Lyme information.

 

[LJS]

I tested positive for Lyme through Igenex and positive for XMRV through VIPdx. I don't really know what to think at this point, I have been under Lyme treat for years with some improvement but nowhere near functional. I wonder if XMRV is playing a role in my slow recovery, there are just so many unanswered questions that I think it is too early to make any connections.

 

[SunnyGal]

I also tested positive for Lyme through Igenex and positive for XMRV through VIP Dx. I have two very excellent Lyme doctors who work together on a lot of patients and they both say they expect to see their patients start to really turn the corner and greatly improve by 1 year of treatment. When I wasn't turning that corner and wasn't really getting better they both agreed that they felt that it was due to XMRV holding me back, preventing me from getting better. My LLMD said he's very anxious to get me on treatment for XMRV, once the studies are done and treatment options are determined.

Sunny

 

[Gemini]

Lesley,

Important posting, thank you!

Any way to send this to Dr. Deckoff-Jones who also had Lyme?

Gemini

 

[Frickly]

Lyme seems to be rampant through out our community. I am currently trying to get a diagnosis of lyme as my sister was just diagnosed. I am also having my son tested who has autism. I think we are making some huge steps forward. People are starting to see these connections.

 

[Cloud]

Same here on the VIP xmrv+, and the IgeneX Lyme+.....Actually the Bb was marginal, but a definite Babesia+. My LLMD says I wouldn't likely have Babesia and not Bb....so we have been treating both. I have always had great responses to ABX, but don't have a sustained response, even after a year of Tx. So maybe xmrv is the cause of what's being called Chronic Lyme. My doc networks with all the best LLMD's here on the west coast and she agrees that xmrv may be a partner in crime, but she is very much against Tx the xmrv yet.....I have to agree with that especially since I am so med intolerant.
I too was told by a WPI doc that they are finding much higher rates of Bb and Babesia than other co infections with xmrv. But it doesn't explain it all.....it certainly doesn't explain cluster outbreaks. It's very exciting times watching the last pieces of a huge puzzle put into place.