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

cfs since 1998

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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.
 
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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.
And is valacyclovir Not more effective than acyclovir?
 

heapsreal

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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.
 
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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
 
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Learner1

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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

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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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Thank you for your responses. I developed CFS at the age of 16, and I am now 30 years old. Could you please provide me with an assessment of whether viruses might be triggering my symptoms? My main symptoms include severely impaired brain function (I have difficulty thinking, speaking, and concentrating), strong fatigue, have no Feelings inside me (a lack of emotional connection), very low libido, stomach bloating, psoriasis, anal fissures, as well as a lack of motivation and drive.

In my last report from Armin Labs in 2022, no pathogens were detected using the Elispot test. Does this mean that chronic infections are not the cause? Or could the results be completely different with another test?
 
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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.
When did you start to feel better from Acyclovir and Valcyte?

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.
This means that laboratory results can change during a therapy, and it is necessary to adjust the medication accordingly. Isn't it true that this would be nearly impossible without the support of an experienced doctor?


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.
That means Tenofovir helped you to feel better or to stay healthy?
 
Messages
31
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👍
That means famvir and Valcyte was the Game changer for you? What for viruses did you have?
 
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This is from 2019 and 2020
 

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This from 2021
 

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In 2022, I underwent my last test for chronic pathogens at Armin Labs, where no pathogens were detected using Elispot. Should I conduct laboratory tests again? If so, which tests do you recommend to identify all viruses such as parvoviruses, herpesviruses, and others? I would like to gain a clear overview of which pathogens are the most significant concern.
 

Learner1

Senior Member
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Location
Pacific Northwest
When did you start to feel better from Acyclovir and Valcyte
Acyclovir started helping HSV2 symptoms within 2 days. Valcyte gradually helped with fatigue from EBV and HHV6 over 3-48 months.

That means Tenofovir helped you to feel better or to stay healthy?
To stay healthy and keep the viruses from reactivating.
This means that laboratory results can change during a therapy, and it is necessary to adjust the medication accordingly. Isn't it true that this would be nearly impossible without the support of an experienced doctor?
I'd be happy for a doctor willing to order tests and prescribe drugs for problems identified on the tests. Having had the viruses repeatedly reactivate and do serious damage to my health, I think it's useful to retest after any major physical stress - eye surgery, dental surgery, COVID or COVID vaccines, etc - all reactivatedeither my HHV6 or EBV.
This is from 2019 and 2020
That's 5 years ago. Gives you clues for what to look for now.
Should I conduct laboratory tests again? If so, which tests do you recommend to identify all viruses such as parvoviruses, herpesviruses, and others? I would like to gain a clear overview of which pathogens are the most significant concern.
Yes! PCR tests are best. For anything you've had a positive results in in the past. And anything else it's likely you were exposed to. Definitely EBV.
 
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That's 5 years ago. Gives you clues for what to look for now.
What do you think are the pathogens that pose the greatest problem based on my previous lab results? And which medications should I use to treat these pathogens? For the Epstein-Barr virus (EBV), medications such as Valcyte and Tenofovir would be appropriate, while Aciclovir or Valaciclovir could be considered for the treatment of other pathogens Like HSV ,correct? Or anything Else, i forgot?

Thank you!
 

Hip

Senior Member
Messages
18,164
What do you think are the pathogens that pose the greatest problem based on my previous lab results?

The pathogens most commonly linked to ME/CFS are the two enteroviruses coxsackievirus B and echovirus; the three herpesviruses Epstein-Barr virus, HHV-6 and cytomegalovirus; and now also the coronavirus SARS-CoV-2.

The tests that ME/CFS doctors use for these pathogens are detailed in this MEpedia article.
 
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