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Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

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hunter1899

Senior Member
Messages
152
My doctor says Valtrex won’t help because all of my EBV tests are negative except for IGG. He said if my EA was positive he’d be open to trying Valtrex. Now I know Valtrex doesn’t work for everyone but I was wondering if everyone who was helped by it in his study had a positive Early Antigen? Or just high IGG??
 
Hip

Hip

Senior Member
Messages
17,858
Dr Lerner's criterion for an active EBV infection in ME/CFS (which he would treat with Valtrex if there were no other herpesvirus co-infections) is high antibody levels in the VCA IgM and/or high antibody levels in EA IgG diffuse tests. Refs: 1 2
 
J

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
I attended a conference in 2008 where Dr. Lerner was a part of a round table discussion. He used both Valtrex and Valcyte on his patients, and when asked how long he kept the patients on the drugs, his answer was" until they were 80% recovered". He stated that at the time he had one patient on Valcyte for six years.

He holds a patent on the use of these drugs for ME/CFS, US patent # 6,399,622. The patent is a fairly long document that describes his theory of ME/CFS and describes how he believes the antivirals work. This patent was issued June 4, 2002, so it is not exactly news any more.

In his patent document he states that " it is further hypothesized that chronic fatigue syndrome is essentially cardiac in origin, and the this cardiac basis unlocks the key to the disorder", Many today would dispute that, but I was taking Valcyte at the time and found a great deal of improvement from it. When I started Valcyte, my blood pressure had dropped to 80/50 and my pulse was 50. By the time I stopped taking Valcyte 10 months later, my pulse and BP were normal.

I later tried Valtrex, but wasn't able to tolerate it. I was fortunate to have tolerated Valcyte as many have been unable to.

John
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
hunter1899 said:
My doctor says Valtrex won’t help because all of my EBV tests are negative except for IGG. He said if my EA was positive he’d be open to trying Valtrex. Now I know Valtrex doesn’t work for everyone but I was wondering if everyone who was helped by it in his study had a positive Early Antigen? Or just high IGG??
Click to expand...
I only had high VCA IgG and a positive PCR for EBV. Did Valcyte for 20 months. Brain fog cleared in 30 days, great improvement. He kept me on it until I had four successive negative EBV PCRs.
 

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Hip

Hip

Senior Member
Messages
17,858
Learner1 said:
I only had high VCA IgG and a positive PCR for EBV.
Click to expand...

Interestingly (but confusingly), Prof Montoya's criteria for active EBV infection in ME/CFS are slightly different to Dr Lerner's criteria:


Lerner says active EBV infection = high VCA IgM and/or high EA IgG diffuse. Refs: 1 2

Prof Montoya had his own EBV criteria, with active infection indicated by high EBV VCA IgG and EBV EA IgG (but he also required high HHV-6 IgG). Refs: 1 2


Your VCA IgG is pretty high, so by Montoya's criteria, perhaps you might be positive.
 
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H

hunter1899

Senior Member
Messages
152
Learner1 said:
I only had high VCA IgG and a positive PCR for EBV. Did Valcyte for 20 months. Brain fog cleared in 30 days, great improvement. He kept me on it until I had four successive negative EBV PCRs.
Click to expand...

Interesting. Did you test positive for any other viruses?
 
S

Svetlana82

Messages
12
Learner1 said:
I only had high VCA IgG and a positive PCR for EBV. Did Valcyte for 20 months. Brain fog cleared in 30 days, great improvement. He kept me on it until I had four successive negative EBV PCRs.
Click to expand...
@Learner1 - Hi! I’m a new member here but have been suffering from CFS for the last 10 years. Someone here on the forum has mentioned you can recommend some good CFS doctors and what treatment has helped you? Thanks so much!!!
 
S

Svetlana82

Messages
12
Thank you! Could you please write your doctor’s name and his contact information? And what was your daily dosage of Valcyte in mgr? How are you doing now and what are you currently taking?
 
J

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
@Treeman, I believe that you are mixing up Valtrex and Valcyte. It has been 12 years, but as I remember the dosage for Valcyte patients is 450 mg twice a day. Dr. Lerner used both drugs as conditions warranted.

Valcyte is a very expensive drug, Walmart will sell you a months worth, 60 tablets, for $ 1,432.31. This is much less expensive than it was when I took it, and it should be used only with a doctors supervision, as regular blood tests should be a part of your usage.

Valtrex is much less expensive and could probably be used without a doctors supervision. There are several other antivirals that could possibly help, more information is available at https://hhv-6foundation.org/category/antiviral-treatments.

The decision on which drug to take should involve testing to determine which viruses are present. The testing is very controversial and all testing labs are not created equal.

When I started on Valcyte it was a relatively new drug. I attended the HHV-6 conference in Baltimore in 2008 and met Dr. Montoya's wife. We got to talking and she said that she was wheelchair bound before she started taking Valcyte. At the conference she was very active and didn't seem visibly impaired. Valcyte has definitely worked for some.

Please understand that I have no medical training and am just going by my experience. Finding a doctor that understands the use of antivirals to treat ME/CFS can be a very difficult task. I went to the Mayo Clinic in Rochester, MN in the hopes of finding a knowledgeable doctor. They are very good at finding out what is not wrong with you, which is how they diagnose ME/CFS, if they can't find anything else, then you have ME/CFS. After many trips I began doing my own research and found enough information to convince the doctor to prescribe Valcyte. It took me 25 trips to finalize things there. I was able to convince him to let me use the drug for 10 months. At the time, I had no idea of how long a person should take it, as there wasn't much in the way of experience with the drug and ME/CFS. There is a lot more information on the HHV-6 website today than there was 12 years ago. Today I would stay on the drug for as long as possible, or as long as the insurance company would keep paying for it.
 
S

Svetlana82

Messages
12
jstefl said:
@Treeman, I believe that you are mixing up Valtrex and Valcyte. It has been 12 years, but as I remember the dosage for Valcyte patients is 450 mg twice a day. Dr. Lerner used both drugs as conditions warranted.

Valcyte is a very expensive drug, Walmart will sell you a months worth, 60 tablets, for $ 1,432.31. This is much less expensive than it was when I took it, and it should be used only with a doctors supervision, as regular blood tests should be a part of your usage.

Valtrex is much less expensive and could probably be used without a doctors supervision. There are several other antivirals that could possibly help, more information is available at https://hhv-6foundation.org/category/antiviral-treatments.

The decision on which drug to take should involve testing to determine which viruses are present. The testing is very controversial and all testing labs are not created equal.

When I started on Valcyte it was a relatively new drug. I attended the HHV-6 conference in Baltimore in 2008 and met Dr. Montoya's wife. We got to talking and she said that she was wheelchair bound before she started taking Valcyte. At the conference she was very active and didn't seem visibly impaired. Valcyte has definitely worked for some.

Please understand that I have no medical training and am just going by my experience. Finding a doctor that understands the use of antivirals to treat ME/CFS can be a very difficult task. I went to the Mayo Clinic in Rochester, MN in the hopes of finding a knowledgeable doctor. They are very good at finding out what is not wrong with you, which is how they diagnose ME/CFS, if they can't find anything else, then you have ME/CFS. After many trips I began doing my own research and found enough information to convince the doctor to prescribe Valcyte. It took me 25 trips to finalize things there. I was able to convince him to let me use the drug for 10 months. At the time, I had no idea of how long a person should take it, as there wasn't much in the way of experience with the drug and ME/CFS. There is a lot more information on the HHV-6 website today than there was 12 years ago. Today I would stay on the drug for as long as possible, or as long as the insurance company would keep paying for it.
Click to expand...
Thank you so much for sharing!! Did you get any positive results with Valcyte? How are you feeling now and what are you taking? Thank you in advance!
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Davsey27 @Svetlana82 In addition to EBV, I had CMV, HSV2 and HHV6. Dr Kaufman put me in two 450ng tablets of valganciclovir twice a day, or a total of 1.8g per day for the first year, then 450mgvtwice a day for the final months. But the first 30 days I made the list progress, got rid of my brain fog and decreased fatigue

My doctors originally tried to put me on Valtrx, but my insurance wouldn't authorize the 3g a day the doctors wanted me in, only 2g. So, they switched me to the high dose valganciclovir, which was more expensive, but approved, and more effective for the multiple herpes family virus.

Valganciclovir isa notorious drug for price gouging in the US, with the generics priced right under the outrageously priced brand name, which likely sells for 100 times what it costs to make, so unfortunately, it's not in the formulary for several insurance plans, even though it's the most effective drug.

There are a couple of reasons doctors may be hesitant to prescribe it... One is that it's been used in cancer and AIDS patients who are very sick to begin with, and it can be tough in these compromised patients' lived and kidneys. My doctor had me do "safety labs," a CBC and CMP, every 3-4 weeks while I was on it, though I didn't experience any issues. The other risk can be infertility, however, I was just planning on having any more children, and several patients I've known are aware of the risk but have been so sick for so long that they prioritize getting well over the potential risk.

Best wishes...
 
sometexan84

sometexan84

Senior Member
Messages
1,235
hunter1899 said:
Didn’t Lerner treat patients who’d had CFS for years? I had no idea that the IGM or EA could stay positive that long??
Click to expand...
IgM doesn't stay for long.

Multiple sources online (recent, and authoritative) say EA is a good measure for current infection. And that it's a good measure of treatment success, when EA is going down.
 
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