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

cfs since 1998

Senior Member
Messages
735
Hey everyone, I have had CFS for about 15 years, and I would say that I haven't treated viral infections adequately. My test results showed very high levels of HSV 1 and 2, and moderately elevated levels of VCV, Staphylococcus, and Chlamydia trachomatis. I've been taking Aciclovir for about 3 weeks now and felt a slight improvement in the first weeks, but not anymore. Aciclovir sometimes makes me even more tired than I already am, which could be a sign that I'm responding to the treatment.
But should I switch medications? I've read through the thread and I'm a bit confused because I don't exactly understand which medication would be right for my case: Valcyte or Valtrex? Thank you! @Hip @Pyrrhus what you think?
Valacyclovir (Valtrex) is the prodrug to acyclovir. The liver converts valacyclovir to acyclovir in the body. Valacyclovir is good for HSV1 and 2 and VCV and is usually considered to be safer than Valcyte (valganciclovir).

I started on too high a dose of valayclovir too quickly and made myself worse. Wish I had just started with a tiny sliver of a pill.
 
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Valacyclovir (Valtrex) is the prodrug to acyclovir. The liver converts valacyclovir to acyclovir in the body. Valacyclovir is good for HSV1 and 2 and VCV and is usually considered to be safer than Valcyte (valganciclovir).

I started on too high a dose of valayclovir too quickly and made myself worse. Wish I had just started with a tiny sliver of a pill.
That means you would recommend to Switch to valtrex?
 

heapsreal

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That means you would recommend to Switch to valtrex?

Benefits of valtrex over acyclovir is that it doesn't have to be dosed as frequently.
Not that it's going to change the treatment but you might find it interesting to google mollarets meningitis, commonly from hsv2 and varicella virus.
 
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Benefits of valtrex over acyclovir is that it doesn't have to be dosed as frequently.
Not that it's going to change the treatment but you might find it interesting to google mollarets meningitis, commonly from hsv2 and varicella virus.
I googled Mollaret's meningitis. Does it have anything to do with CFS? Sorry, but I don't understand the connection right now.
 
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One more question. If the cause is HSV 1 and 2, do you definitely have shingles? Because I don't have shingles, but psoriasis.
 
Messages
12
Benefits of valtrex over acyclovir is that it doesn't have to be dosed as frequently.
Not that it's going to change the treatment but you might find it interesting to google mollarets meningitis, commonly from hsv2 and varicella virus.
And is valacyclovir Not more effective than acyclovir?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,194
Location
australia (brisbane)
I googled Mollaret's meningitis. Does it have anything to do with CFS? Sorry, but I don't understand the connection right now.
Mollarets symptoms to me look alot like cfsme, possibly a sub group. Fatigue, ongoing headaches and seems cyclic due to the virus reactivating regularly. The cause is usually hsv2 but can come from VZV, wouldn't suprise me if it's all the herpes viruses.
 
Messages
12
Hello everyone,

I would like to update you on my current health status. On August 15th, I started treatment with Aciclovir and switched to Valacyclovir after about four weeks. Unfortunately, I have not made any significant progress so far.

Starting from September 25th, I have gradually incorporated L-Lysine, Monolaurin, and olive leaf extract into my treatment. I hope that these additions will bring about positive effects.

But I am unsure about which infection I am actually fighting, as I do not have any current test results. In my older results, a virus sometimes appears as positive, while in other tests the same virus is negative, which has affected my trust in lab tests.

Currently, I am relying on my old results and hoping to hit the mark with a targeted treatment. I have focused on combating HSV 1 and 2, as I had both a positive IgM antibody test and an LTT result at IMD Berlin.

I have read in this forum that many users have achieved better results with Valganciclovir (Valcyte) than with Valaciclovir. Do you think it would be sensible for me to switch to Valcyte?

Additionally, I have often heard that some individuals with EBV have benefited from taking HIV medications like Tenofovir. Since I have occasionally had a positive EBV test, it might be helpful to consider adding an HIV medication to my treatment. What experiences do you have regarding the combination of EBV and HIV medications?

Thank you for your support! @Hip, @Pyrrhus, @heapsreal, @cfs since 1998 , @Learner1 Can you Help me please. I have no doc, who knows how to treat virus
 
Last edited:

Learner1

Senior Member
Messages
6,306
Location
Pacific Northwest
I have read in this forum that many users have achieved better results with Valganciclovir (Valcyte) than with Valaciclovir. Do you think it would be sensible for me to switch to Valcyte?
Depends on what you're fighting. HSV1 and 2 can be fought with acyclovir - I've been on 800mg 2x daily in the past.

Valcyte was helpful for me with EBV and HHV6. I was on it on and off for 5 yrs at either 900mg 2x daily or 450mg 2x daily. Until it wasnt and then my doctor added famciclovir 3x daily also.
But I am unsure about which infection I am actually fighting, as I do not have any current test results. In my older results, a virus sometimes appears as positive, while in other tests the same virus is negative, which has affected my trust in lab tests.
Best to get current results if possible. I've had both EBV and HHV6 reactivate (PCR positive, not just antibodies) at least 3 times over the past 8 years. Sometimes it's one, sometimes the other, sometimes with HSV2. The tests can also miss an active virus, so retesting can sometimes find something that's been hiding.
I have often heard that some individuals with EBV have benefited from taking HIV medications like Tenofovir. Since I have occasionally had a positive EBV test, it might be helpful to consider adding an HIV medication to my treatment. What experiences do you have regarding the combination of EBV and HIV medications?
Finally, my doctor switched me to tenofovir. It apparently has effect against EBV in research. It was much cheaper, and after 2 months on it 18 months ago, I haven't had any reactivations since.

Once you hit the viruses, some mitochondrial support nutrients might be helpful, too.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,194
Location
australia (brisbane)
Hello everyone,

I would like to update you on my current health status. On August 15th, I started treatment with Aciclovir and switched to Valacyclovir after about four weeks. Unfortunately, I have not made any significant progress so far.

Starting from September 25th, I have gradually incorporated L-Lysine, Monolaurin, and olive leaf extract into my treatment. I hope that these additions will bring about positive effects.

But I am unsure about which infection I am actually fighting, as I do not have any current test results. In my older results, a virus sometimes appears as positive, while in other tests the same virus is negative, which has affected my trust in lab tests.

Currently, I am relying on my old results and hoping to hit the mark with a targeted treatment. I have focused on combating HSV 1 and 2, as I had both a positive IgM antibody test and an LTT result at IMD Berlin.

I have read in this forum that many users have achieved better results with Valganciclovir (Valcyte) than with Valaciclovir. Do you think it would be sensible for me to switch to Valcyte?

Additionally, I have often heard that some individuals with EBV have benefited from taking HIV medications like Tenofovir. Since I have occasionally had a positive EBV test, it might be helpful to consider adding an HIV medication to my treatment. What experiences do you have regarding the combination of EBV and HIV medications?

Thank you for your support! @Hip, @Pyrrhus, @heapsreal, @cfs since 1998 , @Learner1 Can you Help me please. I have no doc, who knows how to treat virus

Valcyte can work and can be hard to tolerate and expensive. I ran it for 18months but really 6 months would have been enough as I saw no benefit after that. But also looking back, I think if I just ran famvir, I'd be in the same place I am now.

I think famvir has a broader range of action than what it's indicated for going by my experience and what I've seen from others over the years. I think it can work on ebv, cmv and hhv6. I think it's pro's over valtrex is that famvir has a long intracellular half life of 18hrs, from memory, which I think improves its effectiveness. The blood level half life is similar to valtrex which is about 4hrs. I've found dosing 500mg twice a day effective.

I think it also helps to try to improve your nk function and T cell function. If you can find a good affordable source of Immunovir or cycloferon, they can help improve immune function.

Antivirals are a long term treatment, but I'd give it atleast 3 months to notice some improvements. Some people can stop antivirals after a few years and others like me can't. I've been on antivirals since 2009. I take NAC to help protect the liver from an potential long term stress from medications.

I'm currently functioning at an 8 or 9 out of 10 but made some big life changes at the start of this year. I've moved out of a capital city and down sized so I have no mortgage and I work a very casual job, so have plenty of time to rest. I've had some investment things I've worked towards when I first got cfs as I knew I wasn't going to be able to work until I was 65, I'm now 53. My wife is happy to work, non cfs people don't have the ability to sit around and do nothing for days at a time, 🤣. I do go to the gym twice a week, so usually pem it the following day but slowly getting stronger and abit fitter.
I think if I had to work a full 8hr day 2 days a week plus, I'd probably function at less than an 8 out of 10 and there would be no gym stuff.

Hopefully that helps👍
 
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