Anyone used Valtrex or Valcyte ?

Discussion in 'Fibromyalgia Main Forum' started by deepak, Aug 28, 2012.

  1. deepak

    deepak Member

    Has anyone used these drugs for EBV or other herpes virii ?

    We get them in India easily , without a RX and I was wondering if I should try it for my active EBV .

  2. deepak

    deepak Member

    hey jamin:)

    Well I am looking into Lauricidin, OLE, and Microbojen from Jernigan - all which seem to tackle EBV.

    From what i read Valtrex seems safe - if one has a lot of water in the day while on it so as to avoid forming kidney stones - Valcyte is not AS ambivalent ....

    Dont know if to do the natural route or anti viral route-

    Btw - have u tried the joint relief formula of dr mercola which has the egg shell membrane ?

  3. deepak

    deepak Member

    You guys taking all our doctors away hahaha :)

    my cousin is a heart surgeon too at Texas heart :)

    Do let me know how heal n soothe goes with you - always looking out for this kind of stuff for mom

  4. deepak

    deepak Member

    Hmm I dont know about that -

    my Dr cousin in USA dismisses my symptoms as hypochondria !!

  5. deepak

    deepak Member

    Thanks :)

    What about Valtrex -I read thats very safe

  6. Marta608

    Marta608 Member

    I suggest you go to Dr. A. Martin Lerner's website. I don't know if I can post website addresses on here but he has a Treatment Center for CFS which you can Google. He's in MI.

    In Dr. Lerner's studies he began to believes that CFS (myalgic encephalomyilits) resembled a prolonged infectious mononucleosis which is caused by one of two herpes viruses: Epstein Barr Virus or HCMV - Human Cytomegalovirus. Patients usually recover from these viruses but he began asking himself, What if some don't?

    Long story short: he tests for antibodies to these illnesses, and if found uses Valtrex and valacyclovir (Valcyte) which have both show promise for improvement of symptoms.

    His website will answer more questions for you.

    He's been away from the office for some time, so I've been unable to contact them. I'm considering making an appointment - as many here have with mixed results. If I do, I'll keep you updated.

    I do agree that I would look for a doctor to guide you with these meds even if you can get them OTC.

    Best of luck to you,

  7. deepak

    deepak Member

    Thanks so much.

    Would be great if you do visit and let me know too :)

  8. misskoji

    misskoji Member

    I'm short on energy and time right now, but I wanted to let you know I have experience with both Valcyte and Valtrex. .

    Everyone who commented that you really need to be under a Dr.'s supervision while on either or, or both of these drugs is spot on. Valcyte is VERY liver toxic, I had to lower my dose a couple of times because my bloodwork showed high liver enzymes. Valtrex is more toxic to Kidneys. Make sure to drink plenty of water on both, and consider adding a good liver/kidney detox supplement like SAM-e or milk thistle. I have taken SAM-e from ProHealth for over a year now, and can say this is one supplement I will never be without again. It is really that beneficial for me.

    Here is a thread I contributed to detailing some of my experience:

    I'll try to check back here and answer any questions you may have, and help however I can.

  9. deepak

    deepak Member

    Dear Misskoji ( are you japanese :) ),

    Thanks for the response.

    I read your other detailed thread too.

    I believe Valtrex is if you have only EBV and if you have CMV and HHV6 too then its Valcyte ? What were you given ABX for ?

    Do you have any idea of Lauricidin compares to the antivirals ?

    I am going to show a doc here today - will see what he says and then take it from there.

    Read a miracle success story of someone using only valtrex on another board so am tempted to try it - the only caution Dr lerner has on that is to have lots of water so no kidney stones form.

    Hugs back :)

  10. deepak

    deepak Member

    You mentioned heart can get affected in this.

    My ECG and echo are normal- is that good enough you think?

  11. deserella

    deserella Member

    There are some who have had a lot of success with these drugs. I was on valcyte for 1 year followed by 6 months of valtrex. I am sad to say that these drugs did not help me :( The herxing symptoms were hellish for me. I developed a rare side effect, painful peripheral neuropathy in my legs and feet that are still here and bugging me 5 years later.

    I would be really ponder and research before starting it, so you can be prepared for what might happen. Valcyte inflames the hypothymis, which the part of the brain that controls emotions, so anxiety is a big symptom that can occur.

    I don't want to scare you away from trying these drugs, just be prepared for what could happen. You could have really mild symptoms. Good luck and I hope it helps you if you do decide to go on it.
  12. deserella

    deserella Member

    I noticed someone commented about getting regular blood tests because it can cause kidney failure. It also lowers your white blood cell count so you need to be tested regularly for that as well. Lower white blood cell count will make you more susceptible to getting cold and flu viruses and bacterias.
  13. helsinki

    helsinki New Member

    I got sick in June of 2011 and was diagnosed in Dec by Dr. Lerner with CMV. I began my treatment with Valcyte in Feb. I was at a 3 energy level when I went and am now at a 4.5 and holding with fatigue and so much pain with over exertion. My life has changed drastically and am holding on to the hope he has for me of a 9 to 12 month cure. I just need support in this lonely and isolating syndrome. I started a blog on blogspot JewelsInLife but am too tired to post after not hearing anything..I got discouraged so I am glad I finally found this site. What are your thoughts??
  14. misskoji

    misskoji Member

    I'm sorry it took so long for me to respond. I'm coming out of a bad crash.

    LOL-I am not Japanese. I get asked this a lot with my moniker. Koji is a nickname given to me by my dear grandfather. It's a shortened version of "Kojak", a TV character who was bald. I was bald until I was around three. The nickname has just stuck with me through my life, and all my family uses my nickname. I don't mind at all, it reminds me of my grandfather every time I hear it. I think there is a Japanese model named Koji?

    I do believe you are right, Valtrex is effective against EBV. Valcyte is effective against CMV and HHV6. I took it for both, but mostly for CMV, as my titers were off the charts.

    I'm not aware of Lauricidin, so I can't add anything of value there, sorry. Have you considered transfer factors? ProHealth sells really good quality ones. Mikie has told me that they have helped her a great deal, and I think I am going to try that, too. They target a very broad spectrum, so in case you don't know or can't identify which viri or infections you have, they will just go to work on it.

    Dr. Lerner had me on antibiotics because he identified what no other doctor had-Rheumatic Fever. Even though I had very obvious symptoms of it, every other doctor I sought out dismissed it as Fibro, CFS, or a simple virus. I was supposed to have my tonsils removed, and stay near Dr. Lerner's office for 6-8 weeks, with a PICC line for antibiotic infusions to combat the Rheumatic Fever. I was also to stay on antibiotics for life. He Rx'd such an extreme treatment plan, because my immune system was already suffering, and Strep can just do horrible things. Unfortunately, I was unable to afford such an expensive trip, and have yet to find another doctor who will take his recommendations seriously.

    You mentioned having normal heart tests. This is a tricky one. I'd never had a cardiac work-up until I was under Dr. Lerner's care, so have nothing to compare it to as in before Dr. Lerner. He found so many heart abnormalities in me, it scared me. I once asked one of his nurses about the Holter Monitor he uses, she told me he has it calibrated differently than regular doctors, because he knows what to look for, vs. a regular cardiologist. I did go on to get more cardiac work-ups after I stopped being able to see Dr. Lerner, and they found "nothing too serious". I read my reports, though, and found some of the same things reported by Dr. Lerner.

    I remember someone mentioning something, perhaps a blogpost, or a comment, that PWME should have their cardiac tests both upright, as performed normally, and laying down. Almost all of us have some form of NMH,,POTS, ect. So, to have the tests performed in more than just regular position, this makes a lot more sense to me.

    I hope I haven't babbled too long, and my fog isn't clouding your ability to understand what jibberish I've written, ha.

    Take care, and please keep us updated.

  15. deepak

    deepak Member

    Thanks Miss Koji,

    So I had written to Dr Lee Cowden who has a herbal Lyme protocol which people are using with success. He opined that my symptoms are of parasites ! I had earlier suspected this too. He said EBV gets elevated or active when something else is reducing immunity of the body and advised me to do an extended broad based anti-parasite protocol. I am planning to do Dr Klinghardts parasite protocol as that seems most broad based and thorough.

    Will keep you posted. Many thanks for sharing of your time and experiences :)

  16. misskoji

    misskoji Member


    I'm glad you found us. Welcome. This is such a wonderful place to come to to find answers and get and give support. Our community is so supportive of one another, and very knowledgeable.

    I see that you were lucky, in that you were diagnosed fairly quickly. Not lucky that you are ill, so sorry.

    If you talk to Dr. Lerner, and the community at large, you'll get that early treatment (within the first five years), yields the most chance at recovery.

    You are doing well, moving up on his scale. Keep holding on, and please don't push yourself AT ALL while you are on his treatment, so you have a better chance at feeling even better.

    I hope you'll continue to share your progress with us.

  17. misskoji

    misskoji Member

    That is very interesting, regarding the parasites.

    Please do keep us posted. I hope this treatment gets you some relief!

  18. liis

    liis Member

    i was reading yesterday about one of dr peterson's patients, who said that he recommended generic Valtrex as long as it was NOT from india ... no explanation was given.

  19. I want to reiterate strongly that you should not take Valcyte if you have EBV alone or together with other viruses like CMV etc. Maybe the Valcyte/Valtrex combo works if you have more than one virus, but my doc prescribed just Valcyte despite my having EBV, CMV, and HHV-6, and my EBV went through the roof. It's five years later and I still have never recovered from that.
  20. Marta608

    Marta608 Member

    Hi, Deepak, You asked me to let you know if I saw Dr. Lerner. I did not. I weighed the pros and cons of the drive, the cost, and the medications and decided not to add more stress, cost and physical burden to my life at this time. With winter coming on in MI this is not the time. I've also heard/read/researched how hard those drugs are on your kidneys. It's very important that you be monitored by a health professional if you decide to use them.

    I hope you're doing well.