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Old 05-19-2007, 12:27 PM   #1
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Anyone taking Valcyte or Valtrex for CFS?

Hi--I have long-standing CFS with high titres to HHV-6 and CMV, but no EBV. Is there anyone who has used Valtrex successfully for HHV-6? I know it's not supposed to be effective against CMV. My doc is hesistant to prescribe Valcyte, due to toxicity concerns, though it seems that's what Montoya at Stanford and Lerner in Michigan are using for CMV. Would love to hear from anyone using anti-virals in general. Thanks.

 
Old 05-19-2007, 08:15 PM   #2
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Re: Anyone taking Valcyte or Valtrex for CFS?

nmgrl,


Check out the thread I started titled "Anti-Viral meds". :-)
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Old 06-11-2007, 04:09 PM   #3
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Smile Re: Anyone taking Valcyte or Valtrex for CFS?

Quote:
Originally Posted by nmgrl View Post
Hi--I have long-standing CFS with high titres to HHV-6 and CMV, but no EBV. Is there anyone who has used Valtrex successfully for HHV-6? I know it's not supposed to be effective against CMV. My doc is hesistant to prescribe Valcyte, due to toxicity concerns, though it seems that's what Montoya at Stanford and Lerner in Michigan are using for CMV. Would love to hear from anyone using anti-virals in general. Thanks.
Hi there - I see Dr. Lerner and was diagnosed with EBV, HHV6 and Lyme Disease. I am currently taking Valcyte. I was originally taking 900 mg in the morning, and 450mg at night, but I could hardly walk (was told this is an excellent prognostic indicator). I have since reduced the dose to just 450mg at night and seem to be tolerating that well. I completed 42 days of IV ceftriaxone for the LD, and continue with suppression therapy (500mg amoxi four times per day). Dr. Lerner has been careful to monitor my kidney and liver function, and so far, all is well.
Best of luck to you!
Kat

 
Old 06-11-2007, 05:38 PM   #4
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Re: Anyone taking Valcyte or Valtrex for CFS?

Thanks so much for sharing your experience, Kat. It's good to hear from someone working with Dr. Lerner. How long have you been on the Valcyte? So, on the lower dose, do you have a little more energy or still trouble getting around? Keep us posted on how you're doing--good luck!

nmgrl

 
Old 06-11-2007, 06:48 PM   #5
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Smile Re: Anyone taking Valcyte or Valtrex for CFS?

I have only been on the valcyte for 2 weeks, and had to reduce the dose soon after I started.I have noticed NO improvement yet, but am told by Dr. L that it takes 6-8 months. I am not working right now, and am looking into disability - do you have any experience with that? I have been sick for over two years now, and have finally found a doctor who will help me!
Kat
Quote:
Originally Posted by nmgrl View Post
Thanks so much for sharing your experience, Kat. It's good to hear from someone working with Dr. Lerner. How long have you been on the Valcyte? So, on the lower dose, do you have a little more energy or still trouble getting around? Keep us posted on how you're doing--good luck!

nmgrl

 
Old 06-11-2007, 06:58 PM   #6
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Re: Anyone taking Valcyte or Valtrex for CFS?

Kat, I don't know anything about private disability, but getting disability with SSDI or SSI can be a long process. I got mine with the help of a Legal Aid lawyer. I'm sure that your documentation from Dr. Lerner would be of help. I had letters from a couple of doctors, as well as letters from friends and family, corroborating the extent to which my cfs impacted my self-care, etc. I was able to go back to work very part time, and still keep my disability check, though now I've crashed, so have had to take a leave of absence. I'd encourage you to get the ball rolling, since most people are denied at least a couple of times before being granted disability (for me, three times). They hope that you will give up. Don't. You may get a lot better with the treatment you're doing now, but it doesn't hurt to have the paperwork done, just in case you need it. All the best!

 
Old 06-13-2007, 06:50 PM   #7
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Re: Anyone taking Valcyte or Valtrex for CFS?

Hi Katlin....

How long have you had Lyme? So you only did 42 days with a picc? I had a picc prety much for a year...are you taking any other type of antibiotic with the amox? I was on cocktails of antibiotics...

I have read up on your doctor...I know he is VERY knowledgeable with virus's ...but what about Lyme?

I wish you all the best and a quick recovery. Took me about 4 years to finally start feeling better..had/have lyme for about 20 or more years..went mis-diagnoised...until "one" doctor went on my symptoms and not on the lyme test...THANK GOD FOR THAT ONE DOCTOR!! I did not know about LLMD's...I truly feel for you...

God Bless!


 
Old 07-05-2007, 06:39 AM   #8
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Re: Anyone taking Valcyte or Valtrex for CFS?

Hi Katlin...

how is your treatment going? Are you feeling any better?

I started Valcyte couple days ago. Switched from over from Valtrex? My doc has me doing 900 mg of the Valcyte.

Just wanted to see if you are getting any relief?

Hope things are better for you....

take care...


 
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