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Does Valtrex block mitochondrial reproduction?

JalapenoLuv

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I'm against it's off label use for this purpose. Too dangerous.

There is no long term data showing it is safe and effective. Three months after stopping the drug isn't enough.
 

Ema

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JalapenoLuv

Senior Member
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None of those people had CFS. The population is wrong.

Another thing is that the article states that the lower dose of 500 mg 2x/day was the most effective yet the CFS researchers used 1-1.5g 3x/day. Drugs often follow dose effect trends so the lower dose most likely would damage mitochondria less. We have many questions. Is the high dose really necessary? How much does it damage mitochondria? I have yet to see anyone on valtrex regaining normal function. The amount regained is usually only around 25%.
 
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I'm against it's off label use for this purpose. Too dangerous.

There is no long term data showing it is safe and effective. Three months after stopping the drug isn't enough.
If someone has a chronic viral infection for which a certain anti-viral is indicated, then using it is not "off-label" just because they also have an ME/CFS diagnosis.

And regarding safety, there's no rational basis to suspect that it will specifically make ME patients drop dead when other patients with chronic viral issues have no ill effects after years or decades of taking the drug in a safe manner.
 

JalapenoLuv

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If someone has a chronic viral infection for which a certain anti-viral is indicated, then using it is not "off-label" just because they also have an ME/CFS diagnosis.

And regarding safety, there's no rational basis to suspect that it will specifically make ME patients drop dead when other patients with chronic viral issues have no ill effects after years or decades of taking the drug in a safe manner.

Yes it is off label for the viral conditions that are associated with CFS. People don't get CFS from herpes cold sores on their lip which is one of the approved uses. You can read the Rxlist indications summary above for more information.

Actually a shortage of mitochondria in your heart muscle can indeed make you drop dead. This article discusses how it can cause an AV defect in the heart.

Cardiac Involvement in Mitochondrial Diseases

 

heapsreal

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I guess it's a personal decision to use any treatment off label. Majority of medications available have had to pass safety testing and this isn't generally for a specific illness as such but generally renal and liver conditions are taken into consideration.

In general valtrex and famvir have been shown to be safe in long term studies for different herpes infections.

The example of it not being proven safe in cfs wouldn't be any different to someone with hiv taking valtrex long term for any herpes virus. It's not witheld because they have another Co existing condition.

it's an individual decision one has to make with their doctor. Personally I'm not conservative enough to wait for a magical cure and I'm willing try anything within reason that would help me.

So far using off label treatments have improved my function. I have just finished working 55hrs in5 days, this is not my normal hours which are 30 hrs a week, but have been able to also exercise twice a week. Am i recovered 100% no, but I'm doing a lot better than I was waiting for a cure or given antidepressants off label for cfs.

We all have choices and we need to make informed choices, so far I can't regret what I have done and can only imagine how I would be if I didn't proceed with caution. Probably on disability not sleeping and fogged out of my brain, in pain, where I couldn't function.

personally don't understand why people would try these things? ???
 

JalapenoLuv

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So are you still on valtrex? Do you have to keep taking it for it to work? How long did you have CFS for prior to starting the drug?
 

heapsreal

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So are you still on valtrex? Do you have to keep taking it for it to work? How long did you have CFS for prior to starting the drug?

About 7 years with cfs before I used antivirals. I have been on them awhile mostly famvir since 2009? With 18 month stint with valcyte. I'm still on famvir. Cfs symptoms return after 4 weeks of avs and I'm over due to trial stopping them again. Generally cfs symptoms reverse quickly once back on avs. But I am using different immune mods to try and strengthen immune system eg nk function and neutrophils that should help me stay off avs and keep viruses down on my own.

that's my experience, others have different experience but I think it's a long treatment course for some which i think is what Dr Lerner mentions in his work.

One has to be mostly certain that the different viruses like ebv cmv hhv6 are an issue for you??
 

ukxmrv

Senior Member
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I have been taking Valtrex for a few years now and there has not been any increase in fatigue, or weakness or muscle problems since then.

There has been a decrease in my ME symptoms (sore throat/glands/burning body overnight) during that time instead. I was able to increase my physical functioning.

If I stop taking Valtrex I have an increase in symptom with 3-4 weeks.
 

JalapenoLuv

Senior Member
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heaps,
Do you have a positive test showing low natural killer cell function?

I agree with you that the viral problem seems secondary to an underlying immune disorder of some kind.

NZB,
What dose of valtrex are you taking and how many times per day. What percent of normal are you on valtrex?
 

ukxmrv

Senior Member
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JalapenoLuv

I take 1gram a day if I can afford to buy that much. Spent a few months on 2gm and others on 500mg.

I can't give you a % before and after Valtrex sorry as I had a serious road traffic accident and that has disabled me in addition to the ME.
 

JalapenoLuv

Senior Member
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Cost to benefit, if valtrex can't take a CFS patient and get them well enough to work somehow then it really doesn't justify the expense. 500 mg of generic valacyclovir 2x/day costs $58.90 for someone on the discount plan scriptsave using Kroger pharmacy. The lower quantity was found to be more effective than larger quantities. Maybe because the higher quantities are too toxic to the mitochondria.

Kroger doesn't offer discounts on larger amounts so they are easily $700+ per month.
 

Ema

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The lower quantity was found to be more effective than larger quantities. Maybe because the higher quantities are too toxic to the mitochondria.

This needs a reference.

No quantity has been proven to be toxic to the mitochondria so I'm sure that is not the reason if the first statement is actually based in fact.
 

heapsreal

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heaps,
Do you have a positive test showing low natural killer cell function?

I agree with you that the viral problem seems secondary to an underlying immune disorder of some kind.

NZB,
What dose of valtrex are you taking and how many times per day. What percent of normal are you on valtrex?


Yes was in the Griffith/bond uni study which tested no function over 18 month period.
 

JalapenoLuv

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I was just reading over Montoya's 2013 study on valtrex. The results are terrible. There was no improvement in fatigue, just mental fatigue and self reported cognitive function. We can't even tell how much improvement because they didn't quantify it so I have to assume it wasn't much.

Rxlist has the dosage for recurrent and suppressive treatment, 500 mg twice daily. I pulled the lower quantity from a meta analysis on CFS treatment using valtrex but I can't find it and given the poor research findings I'm not interested in looking for it.

I don't think we'll be seeing valtrex working any miracles here.
 

Ema

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Rxlist has the dosage for recurrent and suppressive treatment, 500 mg twice daily. I pulled the lower quantity from a meta analysis on CFS treatment using valtrex but I can't find it and given the poor research findings I'm not interested in looking for it.

I don't think we'll be seeing valtrex working any miracles here.

Certainly not if we keep misreading the literature! The Montoya study is referring to Valcyte not Valtrex.

RxList isn't considering our population. Lerner has consistently shown higher doses of Valtrex to be safe and effective and nothing in the literature contradicts that as of this point.
 

Sushi

Moderation Resource Albuquerque
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I was just reading over Montoya's 2013 study on valtrex. The results are terrible. There was no improvement in fatigue, just mental fatigue and self reported cognitive function. We can't even tell how much improvement because they didn't quantify it so I have to assume it wasn't much.

Rxlist has the dosage for recurrent and suppressive treatment, 500 mg twice daily. I pulled the lower quantity from a meta analysis on CFS treatment using valtrex but I can't find it and given the poor research findings I'm not interested in looking for it.

I don't think we'll be seeing valtrex working any miracles here.

Montoya's study was on Valcyte, not Valtrex. And note: this study gives the results for a 6 month trial. When the patients were followed for a longer period (12 months?) much more improvement was seen.

Sushi
 

heapsreal

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Antivirals arent a cure, but they can help the right people that fit that sub group. If one has co-infections with lyme or other bacterial infections then improvement in viral infections can be masked by these bacterial infections??

The other difficult thing is actually getting a 100% diagnosis that the herpes viruses are reactivating because they cant really tell, high titres are a guide as well as some other immune tests such as lymphocyte subset testing. Also if one has a low nk function then it just makes it more possible that the herpes viruses can reactivate as its the job of nk cells to fight these infections??

The only way to know is to trial the antivirals and if after 3-6months these arent helping then either stop and look elsewhere for issues or possibly continue and look into possible bacterial co-infections. Some doctors may just trial one on a long term dose of doxycycline. But its not black and white.

I think people have to realise that its a long term committment financially, as well as getting results.

I think many of us have stopped and started when we first used antivirals as we sometimes forget how bad we felt. So one could improve from a 4 out of 10 to a 7 and still feel like crap and stop av's, then realise that going back to a 4 out of 10 is so much worse. Then we go back on the avs.

I dont want people to think its a magical cure, but for the right people it can improve ones symptoms and function. I emphasis this as many people have tried avs unsuccessfully but i think its worth a shot, it can be a shot in the dark though but one can get lucky ;)
 

heapsreal

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In cfs circles valtrex is used for ebv.

Famvir also ebv, but theres enough personal experiences on PR that has shown people with cmv and hhv6 can improve on famvir, maybe dose related??

Valcyte is the one for cmv and hhv6. sometimes one can improve with just famvir and then squeeze abit more improvement out of valcyte. Length of valcyte treatment still isnt known, but i think a 6 month minimum and then go back to another antiviral like famvir to help keep cmv/hhv6 down??

Valcyte is the one that needs closer monitoring of liver and kidney function as well as white blood cell counts and neutrophils as these can be lowered by valcyte. Famvir and valtrex many here have used for years and i guess yearly monitoring would be a minimum.

E/LFT's test for liver/kidney function and FULL BLOOD COUNT tests white cells, lymphocytes and neutrophils etc.