Does Valtrex block mitochondrial reproduction?

[minkeygirl]

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??.

I have been on Famvir for a few months (sorry can't dig out how long now). Upping my dose to 1000 mgs/day has helped with what I and my NP believe is a reactivation of, at the very least my EBV and probably CMV. Since being on it I have not had a Herpes 2 outbreak.

I also had noticeable results with Acyclovir and my Herpes and EBV . Since I can't take Valtrex without becoming enraged, this is working in conjunction with Immune modulators.

But like @heapsreal said, I still feel like crap, but less crap.

 

[JalapenoLuv]

That was my goof. Slow pc.

Looking at Lerhner's one on valtrex from 2007 which is free online.

Table II says that his sample size for group 1 was only 14 and 27 for group 2. The minimum sample size needed to good statistical significance is 30. So neither of the groups results meet the minimum criteria. Further, he lost four patients in his Table V group 1, it went from 27 to 23, making it even worse.

He is saying there is no toxicity but the effect on mitochondria isn't being quantified. We're back to the problem that pre-existing fatigue can be masking the toxicity.

Nobody made a recovery above 7.6 (sedentary work with no exercise) and patients had to keep taking the drugs. Their immune systems are not recovering. He speculates that CFS patients are not achieving latency for some reason.

Maybe the reason the 3 year patients can't exercise is because their mitochondria are destroyed from the drugs. It would be interesting to see body mass measurements which might show that they gained weight due to lessening of fat metabolism by mitochondria.

Another problem is that he doesn't show T wave data after six months so we can't see if his fatigue improvements are correlated with T wave improvements.

Also, protocol indicated that people have to take two additional drugs if they aren't responding.

I really hope that they develop gene therapy for EBV. This is a lot of expense to only do sedentary work.

 

[heapsreal]

That was my goof. Slow pc.

Looking at Lerhner's one on valtrex from 2007 which is free online.

Table II says that his sample size for group 1 was only 14 and 27 for group 2. The minimum sample size needed to good statistical significance is 30. So neither of the groups results meet the minimum criteria. Further, he lost four patients in his Table V group 1, it went from 27 to 23, making it even worse.

He is saying there is no toxicity but the effect on mitochondria isn't being quantified. We're back to the problem that pre-existing fatigue can be masking the toxicity.

Nobody made a recovery above 7.6 (sedentary work with no exercise) and patients had to keep taking the drugs. Their immune systems are not recovering. He speculates that CFS patients are not achieving latency for some reason.

Maybe the reason the 3 year patients can't exercise is because their mitochondria are destroyed from the drugs. It would be interesting to see body mass measurements which might show that they gained weight due to lessening of fat metabolism by mitochondria.

Another problem is that he doesn't show T wave data after six months so we can't see if his fatigue improvements are correlated with T wave improvements.

Also, protocol indicated that people have to take two additional drugs if they aren't responding.

I really hope that they develop gene therapy for EBV. This is a lot of expense to only do sedentary work.

http://www.treatmentcenterforcfs.co...ment-of-142-herpesvirus-patients-with-CFS.pdf
142 in this study/follow up.

 

[JalapenoLuv]

Thanks Heaps. The sample size was larger and I'm ok with him not having control groups. EIPS for the group a herpesvirus responder group only was lower this time, it didn't hit 7 so again patients are stuck with a sedentary job and no exercise. I don't like him considering patients with a score above 5 as not having CFS if they're not recovered. They would have low or moderate grade CFS. Same comments.

I'm not a fan of co-infections but bor. bugdoferi, babesia and anaplasmosis do not suppress the immune system so shouldn't be the cause of CFS so they have to be co-infections for some other cause. Their low EIPS score of 5 at three months shows how poorly they did.

Bartonella on the other hand is a prime suspect because it also causes the production of anti-cardiolipin IgM, the same molecule found in 95% of CFS patients. Cardiolipin is critical for mitochondrial function.

So because of the EIPS score of 7 I am still concerned about mitochondrial toxicity. But if anyone else has some ideas about why these patients can't exercise I'm all ears.

Take home message. Valtrex won't give satisfactory results if you've had CFS for 7.3 years or more (considered nonresponder) and/or have coinfections. After three months of treatment you'll plateau at 5.

 

[Ema]

There are many problems with the EIPS scale. I was exercising regularly at a 5 according to Lerner. At a 7, I could probably have run marathons. It's not reflective of real life in my opinion.

Bb does actually suppress the immune system so that is also an incorrect statement.

Borrelia burgdorferi-induced tolerance as a model of persistence via immunosuppression.

http://www.ncbi.nlm.nih.gov/m/pubmed/12819085/

One case study does not prove that bartonella causes the production of anti-cardiolipin antibodies. As far as I know, that case study has never been studied further to find out if there really is an association.

And 95% of CFS patients *studied* is not the same thing as 95% of all CFS patients.

The devil is in the details, my friend.

 

[heapsreal]

Thanks Heaps. The sample size was larger and I'm ok with him not having control groups. EIPS for the group a herpesvirus responder group only was lower this time, it didn't hit 7 so again patients are stuck with a sedentary job and no exercise. I don't like him considering patients with a score above 5 as not having CFS if they're not recovered. They would have low or moderate grade CFS. Same comments.

I'm not a fan of co-infections but bor. bugdoferi, babesia and anaplasmosis do not suppress the immune system so shouldn't be the cause of CFS so they have to be co-infections for some other cause. Their low EIPS score of 5 at three months shows how poorly they did.

Bartonella on the other hand is a prime suspect because it also causes the production of anti-cardiolipin IgM, the same molecule found in 95% of CFS patients. Cardiolipin is critical for mitochondrial function.

So because of the EIPS score of 7 I am still concerned about mitochondrial toxicity. But if anyone else has some ideas about why these patients can't exercise I'm all ears.

Take home message. Valtrex won't give satisfactory results if you've had CFS for 7.3 years or more (considered nonresponder) and/or have coinfections. After three months of treatment you'll plateau at 5.

I guess some people dont mind using the valtrex to get from a 3 to a 5, the numbers dont sound like huge improvements but it can reduce alot of symptoms and suffering.

I think your on the right track by thinking these infections occur due to a dysfunctional immune system which allows these infections to reactivate, i think thats why treating these infections isnt a 100% cure, but an improvement in symptoms and function. Thats the big question is how to get our immune systems working as normal people can manage these infections??

I think in cfsers that we still need to treat the infections as they have been allowed to go to far but after treating them we need our own immune system to keep them down, thats the part we dont have.

I also wonder if the initial triggering infection somehow 'breaks' the immune system? Some of the immune mods do seem to help immune function, but its not 100%. Is a 100% cure likely? or these treatments just hold us together like duct tape. Even things like rituximab and ampligen one still needs ongoing treatment to maintain improvement??

Im functioning alot better than i was, my job can be physical at times and mentally draining, my shifts are long, 10hrs if im lucky i finish on time. Im doing some weight training twice a week now. I put it down to antivirals playing a big part for me but also my adrenal hormones were low and testosterone, so sorting those out help alot with general energy and recovery as well as improve immune function. Im always weary of relapses though as its just so common. I try to plug in alot of premptive rest days days etc too.

I think grab whatever can give u some improvement?? We dont really know what damage is being done as this illness progresses in severity and or length. I would like to think any treatment that helps, can reduce any possible long term damage and if a cure arrives i will be better for it. Long term sufferers may not get a 100% cure due to the damage that accumulates as times goes on??

 

[JalapenoLuv]

I think your on the right track by thinking these infections occur due to a dysfunctional immune system which allows these infections to reactivate, i think thats why treating these infections isnt a 100% cure, but an improvement in symptoms and function. Thats the big question is how to get our immune systems working as normal people can manage these infections??

No the big question is what are the causes of the anti-cardiolipin IgM and to figure out how to get rid of them.

I also wonder if the initial triggering infection somehow 'breaks' the immune system? Some of the immune mods do seem to help immune function, but its not 100%. Is a 100% cure likely? or these treatments just hold us together like duct tape. Even things like rituximab and ampligen one still needs ongoing treatment to maintain improvement??

Bacteria and viruses that disable apoptosis do exactly that. Cells become long lived incubators, allowing the infections to spread.

I think grab whatever can give u some improvement?? We dont really know what damage is being done as this illness progresses in severity and or length. I would like to think any treatment that helps, can reduce any possible long term damage and if a cure arrives i will be better for it. Long term sufferers may not get a 100% cure due to the damage that accumulates as times goes on??

The more we know about the causes the better we will be able to mitigate their damage and/or eliminate them.

 

[ukxmrv]

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

It would be great if there was a miracle drug for ME and CFS. I buy Valtrex because it improves some of my symptoms. In 30 years of having ME very few drugs, supplements, herbs or non-drug treatment have made a dent.

We end up being grateful for small mercies when that is all that we have. It may not look much to some people but after suffering burning legs when trying to sleep, with no relief through other methods, being able to reduce that symptom, plus the sore throats and glands that have plagued for the entire illness, is not to be scorned.

 

[Valentijn]

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.

Why not? Surely it's worth something to be able to take care of yourself instead of requiring outside care or a family member having to quit working to take care of the patient. Not to mention the non-financial benefits of significantly less pain and suffering.

 

[JalapenoLuv]

Why not? Surely it's worth something to be able to take care of yourself instead of requiring on outside care or a family member having to quit working to take care of the patient. Not to mention the non-financial benefits of significantly less pain and suffering.

The patients were already functional enough to be a EIPS 3 or 4 so they would be doing that already. Valtrex doesn't decrease pain.

I suspect there is a disease progression and that this is the reason you don't see patients with 1 or 2 being included in the study-they would be over 7 years and automatically be classified as nonresponders. As we discussed, he's not finding the cause of the lowered immunity so while eliminating the need for a immune response against the virus is helping raise energy somewhat the other problems CFS patients commonly have-headaches, nerve dysfunction, etc aren't being affected so these symptoms shouldn't get worse but also won't get better because the tissues are still infected with the underlying infection which also blocks apoptosis just as the EBV does. These symptoms are disabling as pain disorders in and of themselves. I suspect this is why.

 

[heapsreal]

Information here is mostly anecdotal with patients experiences. Symptom improvement and type vary. I have had pain reduction as others have.

If your after a double blinded placebo study before believing anything than that's cool. But here we share our own experiences and try and learn from each other.

I will say it's dam hard to quantify ones function as a number. Most scales are about physical function not pain or cognitive function. For us to say we feel better isn't scientific and we probably can't say we improved 10 to 20% etc we just know in ourselves we are better. Some of us have lab results showing certain markers improving etc

I guess you have to decide if you sit on the bench waiting for established treatment or you run on the field and try to score.

Your choice even if you don't agree with what's said it's no big deal as every one has an opinion and or a theory.

 

[JalapenoLuv]

I guess you have to decide if you sit on the bench waiting for established treatment or you run on the field and try to score.

Lehrner isn't an idiot. Like omitting the low EIPS score patients, he probably wasn't seeing a consistent pain reduction effect and intentionally choose to not quantify it.

I'm a CFS patient just like you Heaps and I support self experimentation. On the other hand, it is critical to test something to know if it is really giving an effect or something else is going on. Otherwise time and money gets wasted. And for disabled people like me, money is short.

Further, if your goal is to find a cure, you can't take things that poison mitochondria.

 

[ukxmrv]

I did have a large decrease in FM type pain with valtrex and celebrex. They seem to work well together for me. Better then just Celebrex alone.

Valtrex alone did little to relieve the FM pain I had. Pain was not the major problem for me previous to the development of the FM pain after the road traffic accident.

It's going to be individual.

I agree that a return to work is the most important criteria for me in evaluating a treatment. However, when that isn't possible for me I will move to treatments that relieve symptoms to make my life as bearable as possible.

We have had long discussions on CFS and ME groups about treatments that could possibly be dangerous or possibly cause harm as this is not new to me or cause me to re-evaluate Valtrex.

You may be shooting yourself in the foot by rejecting a treatment that may make your symptoms better while you are /actively pursuing a cure and that rejection based on very little evidence. The weighing of evidence that you are using is not the same as mine.

In the last 30 years I have seen very little in the way of a cure. Although I actively pursue it. Time is running out for some of us.

 

[JalapenoLuv]

I did have a large decrease in FM type pain with valtrex and celebrex. They seem to work well together for me. Better then just Celebrex alone.

Valtrex alone did little to relieve the FM pain I had. Pain was not the major problem for me previous to the development of the FM pain after the road traffic accident.

Most likely the antidepressant relieved the pain and not the valtrex. You can't tell unless you stop the valtrex and see what happens.

Here's a great way to eliminate EBV, make a virus that causes the cell to self destruct. This geneticist made one for cancer and he can't get funding.

A virus that kills cancer: the cure that's waiting in the cold​

 

[ukxmrv]

You seem confused JalapenoLuv,

I'm not taking an AD. None of the AD's that I ever tried for pain made a dent on it and they all created terrible side-effects.

I have stopped and started all the drugs I am on and tried them in combo's and alone to see what works best together and alone. Don't have the money to waste on things that don't work.

It's been 30 years of experimentation for me so used to thinking like this.

 

[JalapenoLuv]

Sorry, I thought Celebrex was an AD. I looked it up and it's a NSAID. It still would have a pain relieving effect because that's what NSAIDS do.

 

[JalapenoLuv]

I also had noticeable results with Acyclovir and my Herpes and EBV . Since I can't take Valtrex without becoming enraged, this is working in conjunction with Immune modulators.

But like @heapsreal said, I still feel like crap, but less crap.

Mental changes are a sign of bartonella and I see that you have a cat picture on your profile. Cats often have bartonella and give it to people. Many bartonella strains aren't caught on the usual tests. It would be interesting to see how you did on rifampin + either (azithromycin or erythromycin). Improvement would point to bartonella spp.

 

[ukxmrv]

Sorry, I thought Celebrex was an AD. I looked it up and it's a NSAID. It still would have a pain relieving effect because that's what NSAIDS do.

No worries JalapenoLuv,

Oddly enough it is the combo of Valtrex and Celebrex that is returning the best pain relief for me. Celebrex alone doesn't seem to work as well.
Also Valtrex and Immunovir was my best combo for viral symptoms but I simply cannot afford to keep buying it.

 

[Ema]

@ukxmrv,

Do you find Immunovir to work better than inosine?

 

[JalapenoLuv]

Also Valtrex and Immunovir was my best combo for viral symptoms but I simply cannot afford to keep buying it.

My integrative MD recommended immunovir but the cost is $149.32 per month (6 months on Cheney protocol) from a Canadian pharmacy so I said no. It boosts T cell output so you get a more vigorous immune response. Of course because the EBV never clears you're on it for life. Conventional MDs won't approve it so you're stuck paying the outrageous integrative MD fees.

I'm not convinced it would offer enough benefit to justify the outlay.