Dr. Holtorf Queries ME/CFS Community: How are Antiretroviral Treatments Working?

[Cloud]

hi..i am a dcotor, sick with chronic fatigue for 17 years, and have had good success with valtrex, and also spironolactone (androgen blocker) .

Thanks for sharing mars....may I ask the dose on the Valtrex? Most I have taken was 500bid

 

[aruschima]

There is a time and place to be critical .......!

Go Easy
I have had no contact with Dr. Holtorf personally, but it was actually his algorithm that was used in the FFC clinics for the first couple years and he was the original medical director who developed the clinical program before Teitelbaum took over the position.

In my opinion both doctors, and a number of others, risked a lot trying to actually help their patients when few docs were willing to give antibiotics, antivirals, hormones, extensive medical testing or even look at CFS or Fibro as a medical condition. Some folks may have no idea how thos early docs risked censure and potential investigation by medical boards, to this day, to treat "outside the box." Those docs, even Dr. T with his incessant SHINE marketing now that he's the face of FFC, have my appreciation. It was treatment at FFC that finally gave me a leg up and diagnosed my Chlamydia pneumoniae infection, even of the or protocol for treating it was insufficient. I'd not even be functional enough to write this post if this had not been so- I'd be dead.

That said, it doesn't surprise me that docs who have painstakingly developed protocols that have helped a portion of sufferers and have built their careers on that are cautious about XMRV. They have a lot invested and they have also seen too many things hold out hope, just like their patients.

That Holtorf is even considering using antiretrovirals with his sickest patients, when the science is still in question (it is even if we wish to believe that this is the one), is laudable and speaks of real commitment to patient welfare rather than medical convention. So I'd support any docs willing to extend themselves by offering whatever info and links to sources we can.

I agree with you a 100%

Personally i think the line of thought that XMRV infects only already immune deficient patients, and is not the cause of the immune dis-regulation it self, defies logic of the data currently known biological abnormalities in ME/CFS .

BUT

If a Dr. contacts us "with an open mind" and wants to help us to find treatment options, it is wrong to minimize such intentions just because he voiced a possibility of a different line of thought than ours, yet is considering to change his line of thought if proven wrong!

There is a time and place to be critical .......!

Aruschima

 

[Enid]

Wish I could help - denied any antivirals here whatsoever and no more testing. But so good to see such a dedicated Doctor there with you.