• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

XMRV positive by stomach biopsy

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Thanks Sushi,

Do you know id Dr. KDM has prescribed this type biopsy for others? Or, better yet, have you heard of other results from a similiar test?

Hi August,

He has prescribed this to others--sometimes because of severe gastric symptoms, sometimes because a patient had had negative XMRV tests but seemed to fit the profile of someone who was positive.

I know 3 people he has prescribed this for, but Sergio is the only one of these who has his results back. I know he has found XMRV in the stomach tissue of others, but how many he has tested, I don't know. KDM refers patients to a gastro-enterologist at a hospital in Brussels if he/she has an opening while the patient is in Brussels. This hospital's schedule was full when Sergio and I were there at the end of January, so Sergio has the procedure done in Spain.

I think there has been some more discussion of this on the Dutch ME/CFS forum.

Sushi
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,104
Location
australia (brisbane)
Hi August59,

No, actually I was looked for XMRV, MLVs, and a bunch of other viruses. I was found "just" XMRV and HHV-6. Interestingly the HHV-6 test is developed enough to give a quantitative result, and it is outrageously high!! However, the serology test for HHV-6 in blood was normal.

Conclusion: my Lymphocytes B are not making enough antibodies to be caught by the blood test (XMRV in theory could cause Lymphocytes B anergy...).

Hola Joey, de nada! :)

Saluditos,
Sergio

So your antibodies to hhv6 antibodies arent showing reactivation but the little buggers are?? Interesting , just like in the original lake tahoe cfsers who lost their ebv antibodies, and i myself who was once positive to ebv now dont have ebv antibodies. I think we just need to treat with av's if we show immune dysfunction as these viruses are going stealth and not being picked up by regular testing.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I think it would be great if they could find a way to reliably detect such reactivated infections, like in this case.
Because at the moment the doctors doing antiviral therapies, like Dr. Montoya, operate with antibody titers that might indicate such an infection, but also occur in healthy people. So it's some sort of a guessing game, the way i understand it.
 

serg1942

Senior Member
Messages
543
Location
Spain
Hi Eric, Yes, of course it seems to be very related with the recent papers showing how XMRV could interact with Herves Human viruses and vice versa. Not sure what Dr. Montoya opinion is though

Yes Eric, my HHV-6 antibodies in blood were normal a few months ago Obviously my B cells are not working very well!

Hi Nielk, yes, actually thats what I did. I did the stomach biopsy in Spain, and then sent it off to Redlabs with dry ice. Not sure if you will need a medical prescription.

Hi Acer2000: They perform a PCR test for XMRVb-env andXMRVb-gag.

Hi aquariousgirl, I dont know, as Prof De Meirleir did not ask for it Its a pity, cause I could have just added a cross in the Request form and they wouldve looked for it too, just for 48 euros more I just did not think of it in that moment Anyway, The treatment KDM is offering is not based on specific antivirals (as Dr. Chia does for enteroviruses, and Dr. Montoya for Herpes Viruses).

KDM looked (in my case), for XMRV, MLVs, HHV6, EPV, Parv B19, CMV and Coxv. (I had been studied for many other infections in blood in the States, but of course not for enteroviruses).

As far as my titers for HHV-6: 4613.25 (0-50) [Not kidding!!! :)]

Hi August59, Sushi answered your questions very well, even better than I would, cause she witnessed my biopsy, while I was happily sleeping with propofol :)

Hi heapsreal, I have not read anywhere that Herpes viruses can become stealth viruses. I rather think that XMRV is causing anergy in the B cellsI mean, probably the immune system is recognising them, but we cannot mount a proper Th1 immune responseBut we are suffering the inflammation and side effects of our immune system trying hard but unsuccessfully to fight these infections

Saluditos,
Sergio
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hi Sergio

Thanks for your answer. What i would be interested to know, is wheter they have ever checked for HHV-6 in your blood, in a different way than by looking for antibodies. Did they ever do PCR, for example? And if so, what was the result?

If i remember correctly, in this video Dr. Montoya says that Herpes viruses are goot at hiding.
He usually works in this way (and i think Dr. Lerner does it like that as well), that he looks for elevated titers that do, according to the traditional understanding, not indicate an accute infection. And they occur in healthy people as well. But if someone has ME/CFS symptoms, he takes those elevated titers as a hint for an infection that is not fully suppressed.

So my thought was, that if, in such a case, they could find the actual genetic material of the virus somewhere, like in the stomach, that would be a great improvement compared to guessing with elevated titers.
But that's just my layman's understanding and maybe it's better i don't speculate too much. It would be interesting to hear the thoughts about that of someone knowledgable though.
 

serg1942

Senior Member
Messages
543
Location
Spain
Hola Eric!

I don't know... I have been looking for my old tests, and the HHV-6 test in blood was done in a bunch of test that I run before going to see Dr. Vrchota in the States, and unfortunately, i forgot to make a copy of those tests, and therefore, they are in her office... What I remember is that I was tested for HHV-6 in blood, but have no way to tell you what assay did they use... I assume it was antibodies, as it is the most usual way...

Sorry...
un abrazo!
Sergio