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Valcyte (plus) Update

Butydoc

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We switched about 18 months ago. We did it for two reasons, primarily. First, my daughter became fully functional (with meds), so I wanted her with doctors experienced with long-term health maintenance rather than acute phase illness. Dr Klimas and her colleagues have experience with maintaining functionality in both ME/CFS and HIV patients thoughout life changes. At 21 yo, I'm expecting my daughter to have a lot of life changes over the next 10 years. :)

Also, we felt that we had gotten all we were going to get out of Valcyte -- and it was a lot. We wanted to have a doc who would look at additional parts of the picture -- immune issues in particular.

We were very happy with what our previous specialist did for us. We just reached a point where we needed a doc with a bigger picture.
SOC, Have you used any anti-inflammatory drugs while on Valcyte.
Dr. Montoya now uses anti-inflammatory on his patients. He feels the inflammatory component of the disease is damaging and needs to be addressed. I started on both Valcyte and colchine almost 10 mo ago with slow continued progress. He claims he has seen impressive results with this combination.

Gary
 

Jenny

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Hi
SOC, Have you used any anti-inflammatory drugs while on Valcyte.
Dr. Montoya now uses anti-inflammatory on his patients. He feels the inflammatory component of the disease is damaging and needs to be addressed. I started on both Valcyte and colchine almost 10 mo ago with slow continued progress. He claims he has seen impressive results with this combination.

Gary
Hi Gary

Can I ask - what is colchine? Nothing comes up when I Google it.
 

SOC

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SOC, Have you used any anti-inflammatory drugs while on Valcyte.
Dr. Montoya now uses anti-inflammatory on his patients. He feels the inflammatory component of the disease is damaging and needs to be addressed. I started on both Valcyte and colchine almost 10 mo ago with slow continued progress. He claims he has seen impressive results with this combination.

Gary
No, we had no anti-inflammatory drugs while on Valcyte. Now we take the standard anti-inflammatory combo Drs Rey and Klimas recommend -- fish oil, vitamin C, coq10, and.... um.... something else. :confused:

I have to agree that the inflammation we're dealing with is a big problem.
 

Butydoc

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He might have meant colchicine???

Ema
Thanks Ema for correcting my spelling. The drug I'm on is colchicine. He recently increased my dosage from .6 mg to .9 mg/day.
He told me if my progress becomes stagnant he would consider using a stronger drug, like methotrexate. He claims he is seeing a very strong cytokine inflammatory profile in cfs/me patients. He should be publishing his results soon.

Gary
 

SOC

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T He claims he is seeing a very strong cytokine inflammatory profile in cfs/me patients. He should be publishing his results soon.
I'm looking forward to that publication. I think all the docs who are actually doing cytokine testing are seeing the same thing. We need this info published and accepted.
 

Butydoc

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Hi

Hi Gary

Can I ask - what is colchine? Nothing comes up when I Google it.
Hi Jenny,
Colchicine is an anti-inflammatory drug most commonly used in acute flair-ups of gout. The drug has been around for at least 50 years.

Gary