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Valacyclovir treatment in Epstein-Barr virus-subset Chronic Fatigue Syndrome: Thirty-six months follow-up - Source: In Vivo, Sep-Oct 2007

  [ 89 votes ]   [ 8 Comments ]
By AM Lerner, et al. • www.ProHealth.com • November 23, 2007


Background: We hypothesized that subset classification of Epstein-Barr virus (EBV) in chronic fatigue syndrome (CFS) is required.

At first, a blinded-random placebo-controlled trial of valacyclovir in EBV CFS subset was performed (Group 1), and this EBV subset was followed for thirty-six months (Group 2).

Patients were given valacyclovir at 14.3 mg/kg every 6 hours. The validated Energy Index (EI) point score assessing physical functional capacity, Holter monitor, multigated (radionuclide) MUGA rest/stress ventriculographic examination, EBV serum IgM viral capsid antibodies (VCA), and EBV early antigen diffuse (EA) were followed.

n After six-months, Group 1 CFS patients receiving valacyclovir experienced an increased mean least square EI point score +1.12 units (122 kcal/day), while the placebo cohort increased +0.42 EI units (65 kcal/day).

n EI point scores at Group 2 increased progressively. Sinus tachycardias decreased and abnormal cardiac wall motion improved. Serum antibody titers to EBV VCA IgM decreased. Patients resumed normal activities.

Source: In Vivo. 2007 Sep-Oct;21(5):707-13. PMID: 18019402, by Lerner AM, Beqaj SH, Deeter RG, Fitzgerald JT. Department of Medicine, William Beaumont Hospital, Royal Oak, MI, USA. [E-mail: amartinlerner@yahoo.com]




Please Discuss This Article:   Post a Comment 

Valacyclovir (Valtrex) treatment in EBV subset CFS
Posted by: spiketheartist
Nov 28, 2007
First, I want to commend Dr. Lerner for hypothesizing that there are different subsets of CFS: those in which the underlying EBV is predominant and those in which HHV-6 or CMV are predominant. As someone who's had CFS for years, and read about it thoroughly, I think he's not only right but making an important step in treatment by perceiving, and treating differently, different subsets of CFS. I don't know if he's considered other subsets, but I hope so. I commend him also for doing an actual controlled experiment, which is not that typical of practicing doctors in this field. But his study design was not quite complete, I think: He didn't test the effect of valtrex on people with ME/CFS who are not the EBV subset, that is, they either have only underlying HHV-6 or who have both EBV and HHV-6. I'm particularly interested in that, because last spring I tried valcyte (valgancyclovir) for my CFS and it made me significantly worse - not just the original reaction as die-off occurred, but worse as month after month went by. I discontinued it after 6 months, and 3 months after that I am still not recovered. My hypothesis is that the valcyte attacked my HHV-6, but because I also have EBV and at least one other possible underlying factor, those became worse as my immune system became overtaxed by the valcyte's effect on my HHV-6. Would it help me to take valtrex? I'm a little scared of it, as it might help my EBV only to make the HHV-6 worse. Would it help me to take both valtrex and valcyte at the same time? I believe the pharmaceutical companies recommend that I NOT do that. I congratulate those with EBV-subset CFS who may actually be cured or at least substantially helped by valtrex, and those who have been cured or at least substantially helped by valcyte. I guess I just want to warn people that these magic bullets do not work for everyone with CFS (as Dr. Lerner realizes) and I hope that someone will figure out what to do with people like me who have multiple underlying factors. Also, it was not clear from the abstract how long the people Dr. Lerner was treating had had CFS before he began treating them. The same is true in what I've read about valtrex treatments. I'd like to see more information about that as well: are these two antivirals as potent against longstanding infections - I've had CFS for 11 years now - as they are against more recent infections. But I thank Dr. Lerner and all other medical researchers who continue in the face of discouragement to try to find a treatment for this disease. J Singer
Reply Reply

 
Valcyte vs. Valtrex
Posted by: plattanzi
Nov 28, 2007
I appreciate the article and the response by J Singer. I have been placed on Valcyte and was debilitated because of the die-off which I did not realize at the time so I stopped thinking it was just horrible side effects. My doctor keeps insisting that Valcyte is the better route to go with this EBV and HHV-6 but my system needs to go low and slow. It is extremely sensitive. I have multiple things going on, thyroid, adrenals, Lyme Disease and will be starting the antiviral protocol again soon. How closely should this type of treatment either with Valcyte and Valtrex be monitored by my doctor is what I would like to know and feel more comfortable with these meds. They just placed me on it and said you will need this for a few months, unfortunately, they told me I was having Herxheimer's and I felt very depressed and alone. They did now inform me I believe because of the lack of knowledge and experience with Valcyte. Should my blood work be monitored, heart, etc.? They work with Jacob Teitelbaum and found that the patients needed a break from the Valcyte for a few weeks because it is so strong. They said that many people are responding to the Valcyte and being restored. Well, not everyone is the same and I was informed after much probing that others had felt debilitated as well. If it will help, I would encourage doctors that will follow this protocol to HAVE a protocol when using these meds so that the patient is not feeling as if they are overeacting. From what the Roche report on Valcyte says is that specific bloodwork should be monitored and none of that was done with me. I have been building up my immune system to prepare for this next round of treatment. Anyone heard about the impact of bovine colostrum on EBV and/or Lyme Disease? D Lattanzi

 

 
Valacyclovir (Valtrex) treatment in EBV subset CFS
Posted by: chrisy8
Dec 3, 2007
Hi spiketheartist,

I would like to share my experience with you about valtrex, I also have CFS for 13 years. I tested HHV6 and EBV positive,18 months ago, my doctor told me that valtrex would help me with the HHV6 (not the EBV) so I tried it for a little while and it made me so much worse, more fatigue I would say exhausted, much less energy, I was hardly able to walk in my house, etc. so i had to stop it. I tried to take it 3 times, and each time I couldn't continue, plus it did put my immune system more down the count of white blood cells showed much worse then they were before the treatment.

Saying this I am sure nobody react the same way to the same medecine, it could still work for others, but this was my experience, and it scared me to try any other antivirus, as I don't want to go back to this feeling again, and it also took me a while before recovring from its effect.

Hope this won't discourage you, but if you ever try it, and you see that you are getting worse, i guess the best thing to do is to stop right away. But also may be you should not try it before you recover more from the effect of the other drug. Anyhow I wish all the best, may you and everyone of us find the right way to treat our problems.

Chrisy

 


Thanks for your input...
Posted by: slevah
Nov 28, 2007
Thanks for your informative post about your own reaction to Valacyclovir. I, too, have EBV, HHV-6 AND chlamydia pneunomiae with my CFS and FM. I recently was considering asking my doctor to try this but now think I will pass! Slevah
Reply Reply

Antiviral treatment
Posted by: nanafibro
Nov 29, 2007
I applaud your knowledge of your illness which I am sure helps you to receive the appropriate treatment. I have believed there were subsets of CFS abd fibromyalgia for a long time. However, I can't carry this to my primary care physician adequately. I have learned from trial and error that meds for pain have little affect for me. I did find Excedrin Migraine worked if I didn't use it frequently. This contradicts Dr. Armands protocol for Guifenisin due to the aspirin in it. My PCP was against me using Ecedrin Migraine it due to poor sleep and the caffiene in it. I now am using Excedrin Back and Body which is the same, but minus the caffiene. It just takes longer to work. It seems to me there must be some sort of inflammatory process, ie. viral, going on with me. I also run a temperature of 99.0 to 100.4 most of the time. What would you recommend for testing to determine if I have residuals of Epstein Barr or other viral infections? If I could get this addressed maybe there could be more focused treatment.
Reply Reply

Valcyte and Valtrex
Posted by: pokeydna
Dec 31, 2007
Having CFS/ME for over 17 years, Labs show Chronic EBV and HHV6, been on Valtrex for years, but never "cured" been on Valcyte for 7 months no great benefit yet, so I have added Valtrex to the Valcyte following Montoya and Lerner's dosing. Will post results in a few months.I will have regular Labs to watch for any Toxic effects.
Reply Reply

 
To All
Posted by: girlsunshyne
Mar 27, 2008
Just like all of you, I have chronic EBV (aka CFS) and at the time that was found, it also showed a recent post CMV infection. After years of research, I ended up at an infectious disease specialist. I have been on 1-3000 mg of Valtrex (valacyclovir) since 2005 and it has helped tremendously. However, I almost feel as though there was something better. When I did more research and found Dr. Montoya's protocal and the 2007 double-blinded study @ Stanford University, I was surprised to learn this study was actually endorsed and backed by the two people that helped me most (how I ended up w/my current doc). Those two are Dr. Dharahm Ablashi and Kristin Loomis. Dr. Ablashi is the original founder for the herpes foundation and Kristin Loomis was the media contact. In 2005-2006, and after Dr. Ablashi co-discovered the herpes virus, HHV-6, Kristin and Annette Whittemore started the HHV-6 Foundation. HHV-6 and HHV-8 (both same class of herpetic strains), are noteably found in cancer patients. There are also ongong studies of that. Anyway, getting along with my story, I took Montoya's info to my doctor. I begin taking 450 mg/day of the valgancyclovir (Valcyte), beginning this weekend for the next six months. Someone here mentioned begin afraid of the Valtrex; well, if it's any consolation, that is what I take now; it will be okay. I am afraid of the Valcyte. It's a viscious circle, isn't it? Girls (or guys), know if there is not marked improvement in six months, the last thing I am trying is something called: The Marshall Protocol. It is using two stong anitbiotics vs. anti-virals in which the anti-biotics get down to the molecular level. The Marshall Protocol is under the assumption the viral infections are actually over overdo of vitamin d and L-form bacteria that cannot be found by regular testing. It's pretty extreme but I was really impressed with what I had read. I will be calling Amy Proal this weekend to talk further about this. Before that, there is one thing I might try. It is a California center called: Holtorf Medical Group. They have been using Valcyte in CFS and FM patients for years. However, it is a fully-integrated five step system using several things. Since I live in Idaho, we'll see what tomorrow holds. As the Good book says, 'do not be anxious for tomorrow'. I can't help to say this, but I am because I know I am getting closer to being better again. If ANY of you would like ANY information of what I have collected, feel free to email me at: girlsunshyne@yahoo.com. I will be more than happy to provide you whatever I am able.

Well, everyone, keep your eyes on the prize and keep focused. Take Care. Melissa

 

 
pokeydna
Posted by: ladybugmandy
Oct 23, 2008
hello. i have also had CFS for a long time - over 15 years now - and am on valcyte and valtrex. i am on only a small dose of valcyte due to liver enzyme elevation (450 mg every 48 hrs).

i am seeing dr. lerner.

i was wondering if the valtrex alone helped you improve at all?

would it be possible to correspond by email?

suebackagain123@yahoo.ca

thank you sue

 



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