Strawberry
Senior Member
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- 2,114
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- Seattle, WA USA
I'm on my countdown. 13 days until my appointment with Dr K.
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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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At least in the case of Dr. Kaufman, who was previously a longtime HIV/AIDS doctor and researcher, he probably tends to gravitate towards the viral side of things.In my experience, OMI is focused on viral testing and treating with anti-virals.
At least in the case of Dr. Kaufman, who was previously a longtime HIV/AIDS doctor and researcher, he probably tends to gravitate towards the viral side of things.
When I saw him last year he said he would much rather have HIV/AIDS than ME/CFS, if he had to choose one or the other. That let me know he appreciates the severity of the illness.
I think you need to look at it from a different perspective. These doctors are using AVs because viral infections exist, not because they necessarily believe those infections are causative.What surprises me about the OMI approach, especia lly from a physician who used to be a HIV doctor, is the focus on herpes titres in ME/CFS. As Dr Chia pointed out at the conference in London earlier this year, before the discovery of HIV lots of people were focusing on herpes virus titres in AIDS patients and speculating about the possible causative role of these viruses but all this became instantly irrelevant once the real cause of AIDS was discovered. Speaking as someone with ME/CFS and pretty much chronic shingles, it seems pretty clear to me that these reactivations are a consequence of whatever the hell is going on with the redox state and the immune system in ME/CFS, not the cause. Valcyte, when it works in a subset of patients, probably works through its immunomodulatory mechanisms rather than its antiviral effect. To my mind, the herpes virus approach is a dead end.
I don't believe Drs Kaufman, Kogelnik, Klimas, or Rey ever believed herpesviruses are the root cause of ME. Anyone who claims they do should check their facts.
Don't we often talk here about what our doctors tell us about ME? What is so private about what one doctor says about the cause of the illness? That seems like something the doctor wouldn't feel is secret unless he's about to publish something related to causality, and what a doctor thinks is the cause of the illness something patients should probably know. Let's just say I don't accept I'm incorrect based only on your say-so when you won't even say who told you exactly what.I cannot repeat things here that were said to me in private but let's just say your view of the OMI is not correct.
Don't we often talk here about what our doctors tell us about ME? What is so private about what one doctor says about the cause of the illness? That seems like something the doctor wouldn't feel is secret unless he's about to publish something related to causality, and what a doctor thinks is the cause of the illness something patients should probably know. Let's just say I don't accept I'm incorrect based only on your say-so when you won't even say who told you exactly what.
You make a lot of excellent points.One needs to give a little respect for the doctors who are working their ass off for all of us, and one needs to be careful about the information that is shared.
It could be to do with the issue I think I discussed with you in another recent thread: reversing an initial cause will not necessarily cure the illness because other things will have happened down the line or across the web of illness causation.If either OMI doctor believes ME is caused by a herpesvirus, has he explained why treating the virus does not result in a full remission of all treated patients?
Gingergrrl, I'm so grateful for your reply! I see myself in your case description. I have tried Valcyte (generic version) and couldn't tolerate even a tiny dose because of BP lowering. In fact, my opinion about antiviral treatment is unstable, varying from "You should start Valcyte ASAP" to "Don't take anything at all".I wanted to reply to the person who asked about autoimmune issues as this is now something I am going to pursue (but not at OMI.) Dr. Kaufman is wonderful as I said and if you find my original post from 1-2 yrs ago, I described him as an angel sent to help us. But in my own case of (N=1) anti-virals did not help me and my condition deteriorated.
Could you be so kind as to PM me about your current MCAS treatment.
As for dr. K, he supposed I might have a chromosomally integrated type of the virus, that means I will always have elevated titres in the blood serum, which doesn't necessarily mean this virus should be treated.
Dr Kaufman seems to be talking about Bartonella a lot with me lately. I'll get tested for it.
Gotta say I'm not happy with that :\
That was the same reason I didn't choose Dr. De Meirleir (only in his case Borrelia).
Let's see what we get.