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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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That's a good approach you're suggesting.
That's how some people get Valcyte covered by insurance -- it's for HHV6, not ME/CFS. If I were in the UK, I'd leap on any symptom that could be isolated and insist on treatment for that, leaving the whole ME/CFS thing out of it. In fact, in your case, I might even demand that the ME/CFS diagnosis be removed from my record since you now have a known reason for your symptoms, so it can't be ME/CFS, right?
Sasha, those of you dealing with the UK NHS have my utmost sympathy.
It's established that HHV6 can cause serious illness, but the belief is that it can't be reactivated.......well, unless you have HIV or are taking immune suppressing meds. They tend to ignore the fact that by that logic, if you DO have a reactivated HHV6 infection, it must mean you have immune impairment. It sounds like you have that problem in spades. I'd be tempted to ask my doc what s/he would do if I had these HHV6 results and was HIV+, or had a bone marrow transplant. You can bet they'd jump on it then. They're assuming you have a healthy immune system which will take care of it -- which is what happens with most of the population.
As for ridding yourself of the diagnosis -- surely it has just been proved that your diagnosis was a misdiagnosis which should be corrected. ME/CFS patients don't have abnormal lab results, do they? Isn't that the whole argument of the BPS crew? I'd be yelling at them for misdiagnosing me all these years.
How high are your titres?
I'm HHV6 AB IGG, IFA 1:1280
and HHV6 AB IGM, IFA <1:20
The reference ranges are given as <1:10 and <1:20, respectively.
I like that question you'd ask your doc! Maybe I should ask it of mine. But I can't understand why HHV6 isn't on the NHS site if it's recognised as an HIV issue. Strangely, Valcyte is on there in the context of CMV but it's as though HHV6 doesn't exist. I'm really confused.
Elevated IgG antibody levels. Elevated IgG antibody levels can suggest, but not prove active, chronic infection. In a 1996 study of HHV-6 in CFS patients, 89% of the patients with IgG titers of 1:320 and above were found to have active infections by culture. (Wagner, Journal of Chronic Fatigue Syndrome)Stanford infectious disease specialist Jose Montoya believes that the best evidence of smoldering central nervous system (CNS) infection is the IgG antibody to the virus, and not the virus itself. In a pilot study, he found that when patients with high titers of HHV-6 IgG (1:320, 1:640 or higher) and EBV are treated with a potent antiviral; their titers fall substantially along with a significant improvement in symptoms. Elevated IgG Antibodies to HHV-6 cannot indicate with certainty that the infection is active, but high titers support a clinical diagnosis.
Thanks, SOC - this is extremely helpful and I've very grateful indeed to you for taking the time to tell me about this stuff!
I'm going to be spending the next few days doing some heavy-duty mugging up. The issue is going to be that whoever I might end up seeing probably won't have done the same and they're the ones with the power!