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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.
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what are the symptoms of xmrv?
- Thread starter Ivana
- Start date
Esther12
Senior Member
- Messages
- 13,774
There's a big study coming out soon which examines whether XMRV is associated with human disease or symptoms.
To me, it currently looks unlikely that XMRV is associated with any human symptoms, but I would definitely wait until the Lipkin study is out before considering paying for any testing. Good luck.
To me, it currently looks unlikely that XMRV is associated with any human symptoms, but I would definitely wait until the Lipkin study is out before considering paying for any testing. Good luck.
Ok thanks. How do some people test positive for it though and say they feel better after meds? My blood pressure is so low that a transfusion has been suggested, but i'm scared of picking up things such as xmrv. I hear that blood transfusions are bad for cfs patients..?
XMRV is a virus not a disease - there are no "symptoms" per se. Nor are there any accurate, inexpensive tests at this time. There is no reason to test until XMRV is proven to be a human pathogen as Esther 12 states and that hasn't happened yet and realistically may never happen although it doesn't mean ME and CFS are not caused by a pathogen.
There is some evidence that a subgroup of ME and CFS patients contracted ME or CFS following a transfusion, but the evidence is quite mixed perhaps in part because of the rareness of such an event or because of the definitions used to diagnose patients.
That said it is possible that if a virus were actively present in a patient donating blood that it could be present in the sera. However, that isn't enough or everyone would get a disease when exposed to specific pathogens. Other variables may be genetics and immune system abnormalities.
Have you considered seeing a specialist who deals with POTS and doesn't just write it off as nothing to worry about?
There is some evidence that a subgroup of ME and CFS patients contracted ME or CFS following a transfusion, but the evidence is quite mixed perhaps in part because of the rareness of such an event or because of the definitions used to diagnose patients.
That said it is possible that if a virus were actively present in a patient donating blood that it could be present in the sera. However, that isn't enough or everyone would get a disease when exposed to specific pathogens. Other variables may be genetics and immune system abnormalities.
Have you considered seeing a specialist who deals with POTS and doesn't just write it off as nothing to worry about?
as far as I know, blood transfusion is not a treatment for low blood pressure (except in an acute, dire emergency where you have lost a lot of blood through, say, an open wound or surgery). Otherwise it would be a temporary fix and expose the patient to unnecessary risk (though the blood is screened for everything they know about, and the risk is minimal, but it is not zero) and create extra antibodies for no good reason.
More standard treatments would be:
1) recommend increased water (and salt) - a doctor will often recommend sports drinks, but these will typically contain additives which we might not be able to tolerate. Lemon vitalyte and lemonade vitamin water are safe for me.
2) move on to compression stockings
3) consider a pharmaceutical such as florinef, but be sure potassium stays in the middle of the range because potassium can be a problem with this drug and it's a problem for us anyway (more details about pharmaceuticals in the primer and in the below links); they recommend dietary intake but it may be necessary to use a prescription potassium (I do, though I'm not using florinef or any such at this time; the potassium is helpful)
see http://www.dinet.org/
and http://www.reumatologia-dr-bravo.cl/patients/Dysautonomia.htm (obviously the exercise may not be indicated for ME/CFS patients)
ETA: Dr. Bravo does maintain a list of physicians internationally who treat dysautonomia. It is a bit sparse, but there could be someone in your area. By scanning the list in the US, it appears most are cariologists, electrocardiologists, and neurologists (as one might have guessed)
a rheumatologist in Chile who has a website about Ehlers-Danlos Syndrome, which website also discusses dysautonomia 
the second link above. It doesn't have good navigation buttons, so here is the home page, which links directly to the directory.
sounds like you do need a specialist. I hope they can figure something else out!
the second link above. It doesn't have good navigation buttons, so here is the home page, which links directly to the directory.sounds like you do need a specialist. I hope they can figure something else out!
Xandoff
Michael
- Messages
- 302
- Location
- Northern Vermont
Ivana
If you are in the U.S. try the co-cure list for Doctors that treat ME CFS. You need a real ME CFS Doctor. Google C0-Cure List ME CFS, it list Dr's by State. My best wishes to you.
To answer the posters original question, symptoms of illnesses caused by gamma-retroviruses are basically the symptoms of ME/CFS. In the animal population, these types of viruses have been known to cause immune perturbations, inflammation, neurological disorders, and cancer. (Google FeLV for an example). Thats the reason why its an attractive hypothesis for the cause of ME/CFS as well as several cancers in humans. The questions isn't whether this type of virus "could" cause those symptoms–it can. Its whether these viruses are actually infecting humans and causing those symptoms in humans. Thats the subject of debate at the moment.
Xandoff
Michael
- Messages
- 302
- Location
- Northern Vermont
Sushi
Moderation Resource Albuquerque
- Messages
- 19,935
- Location
- Albuquerque
For symptom relief, you might want to ask your doctor about midodrine. It is pretty effective for some. I tried it and it worked well for a couple of weeks, but then I started to get side-effects and had to stop. Still, we all react differently, and this medication makes a big difference for some.
Long term, I agree with Xandoff--treating some of the issues that are likely to be part of the causal landscape, will eventually help with symtoms also.
Best wishes,
Sushi