Valcyte (plus) Update

Butydoc

Senior Member
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790
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

Senior Member
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1,388
Location
Dorset
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

Senior Member
Messages
7,849
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

Senior Member
Messages
790
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

Senior Member
Messages
7,849
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

Senior Member
Messages
790
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
 
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