Posted , 7 users are following.
Hi folks
Has anybody tried Valganciclovir to treat CFS/ME ?
( I have had HHV6 and it seems some research studies indicate that the drug is beneficial for treating post viral fatigue)
Thanks
Simon
0 likes, 10 replies
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jackie00198 simonkm1
Posted
Hi, Simon. The doctor you're seeing must really know his stuff to prescribe that drug. Dr. jose Montoya is a very well-respected ME/CFS specislist/researcher at Stanford, here in the U.S. He often uses that drug (also known as Valcyte), which he says can help a certain subset of patients. Good luck with the treatment.
caitlin39841 jackie00198
Posted
Hi Jackie and a happy x-mas to you. I must say that I never cease to wonder how you keep up to date with the latest treatments and your brain always seem to be so clear. I struggle deseprately with an unclear brain & get so tired when I try to focus on anykind of dense text. well done you.
jackie00198 caitlin39841
Posted
Hi, Caitlin. Happy X-mas to you, too. I used to be an editor in another life before this illness. But ME/CFS has definitely scrambled the wiring in my brain. When I post something, I read it several times for errors. I'm constantly reversing letters, mixing up words, putting in typos. What a mess! I just try not to worry about it and move on.
jennywren2897 simonkm1
Posted
My GP told me a few weeks ago that a patient of his had tried this
drug with remarkable effect for the symptoms of his M.E..
The GP was really pleased. However the patient had to buy it on
the internet as in the UK the health authorities will not prescribe it
on the NHS for M.E. patient treatment. It is quite expensive to buy
however.
This patient had been previously diagnosed with glandular fever
at the onset of M.E.. I did some research on this and it appears
from studies that this drug works well in patients showing blood
antibodies having had glandular fever but not in other viral cases
associated with the onset of M.E. or CFS. I think though that for
HHV6 herpes virus it would be beneficial.
If you are able to, it may be worth trying.
Best wishes to you for 2017
Jenny
simonkm1 jennywren2897
Posted
My immunologist advised against it , saying it can cause liver toxicity
I am on valocyclovir meanwhile.. I will ask him again next time i meet him
Best wishes
Simon
sachin57366 jennywren2897
Posted
Hi - I know this is an old post ...but any idea how / where they managed to source the ValGan?
KPD simonkm1
Posted
Hi Simonkm1, When I was first diagonsed with CFS 25 years ago, the infectious disease doctor said that HHV6 was causing many of my symptoms, and so he treated me with Acyclovir-I'm assuming that is the same thing as Valgancliclovir.
It didn't help much, but I would try it. There are several studies that have concluded that antivirals are helpful. Good luck!
simonkm1 KPD
Posted
I will look it up,
What did help you? Are you on any other medicine? ( if i may ask)
Regards
Simon
KPD simonkm1
Posted
Hi Simonkm1,
The things that have helped me are the following:
1. Better quality sleep-I take a low dosage of Doxepin (an anti-depressant) at bedtime. This drug is now being used to help improve sleep. Also, Xanax helps give me a bit of a boost and helps with anxiety. As you probably know, stress and anxiety are so bad for people who have ME/CFS.
2. Light to moderate aerobic exercise-like jogging or walking fast on a treadmill for 20-25 minutes. It helps with the positive attitude. That's next on the list....
3. A positive attitude-meaning very little stress in my life (this isn't always easy)
I have many ups and downs, and there are times in the day where I feel better than others. Mornings are the worst! Also, the winter months are very difficult for me. I want to hibernate even when it is not cold outside.
I'm thinking of asking my internist to put me back on an antiviral medicine again. Anyway, good luck. Hope the anti-viral medication helps you :-)
KPD simonkm1
Posted
I just re-read your post and noticed that the drug your doctor wants to try is different from the drug my doctor had prescribed. I was prescribed Valtrex and Zovirax at the time. These are both anti-viral medications used to treat Herpes, but I believe they are different from the one your doctor wants to try. I just wanted to clarify that. Hope it helps. Please keep us posted.