ANNXYZ was hoping I could talk to you.

Discussion in 'Fibromyalgia Main Forum' started by Trevor1, May 22, 2006.

  1. Trevor1

    Trevor1 New Member

    Hi annxyz if you ever see this message, I read in another topic that Valtrex helped you with a chronic EBV diagnosis. A few days ago my infectious disease specialist said I have a case of chronic EBV. He did the specific DNA EBV test and it was still present in my blood.

    Anyways, his approach was to put me on an antiviral drug such as Valtrex. However he didn't know which one, hes researching it for the time being and is going to get back to me when he has found his drug of choice.

    I was just hoping you could tell me how you decided to end up using Valtrex, and how it helped your symptoms, and which ones it helped the most. Id appreciate any information you can give me, since researching chronic EBV usually leads to chronic fatigue information and the general symptoms of CFS.

    My CFS specialist diagnosed me with CFS months ago and thats what ive been treating with supplements, etc. But I really want to try and get this chronic EBV under control. I think if I could have an impact on the EBV I would begin to feel better.

    Anyway if you get this, just any information about your general run in with chronic EBV and if you still have it. Because im curious to find out all I can about this, so I can help my doctor help me.

    Thanks again for any information you can share.

    Take care,
    Trevor
  2. ANNXYZ

    ANNXYZ New Member

    I read a story about an infectious disease doc in Detroit who had been very sick with CFIDS ( Wall Street Journal 2000) and who recovered . His name is Dr Martin Lerner
    and you can find info on the net about him .

    My doctor ( infectious disease ) had heard Lerner speak and found him compelling . Lerner suggests HIGH doses of Valtrex ( I took two 1000 mg daily I think ) and tells people they will not see benefits for a few months .
    Before I started valtrex, I would often be stuck in the house for days at a time , unable to leave and confined to bed . After a few months , I began to see a little progress and never had to be confined to bed for long periods.

    I do believe it REALLY helped me . I am still ill, and have been diagnosed with lyme disease . ( If you have not had an Igenex test, get one, and if you have two positive bands consider lyme a possibility ) . The lyme tests most of us are given are totally a waste .


    I think valtrex can really help , but it takes high doses for an extended time. I have heard others say that acyclovir can help . You may also want to research a new drug that is reportedly helping many CFS people called Valcyte . Jarjar ran a post on it recently , though I have heard other good reports about it .

    Other things to check out include olive leaf extract and monolaurin . OLE is effective on HHV6 , and would probably work on EBV . Monolaurin helps weaken the envelope of the virus, making it vulnerable .

    If you have a good doc, you might even have him call Lerner's office for suggestions . I think Dr Martin Lerner may have his own website .

    Good luck - You can make progress!!!
  3. ANNXYZ

    ANNXYZ New Member

  4. ANNXYZ

    ANNXYZ New Member

  5. Trevor1

    Trevor1 New Member

    Hi Ann,

    Thanks for your information, it is much appreciated. I found Dr. Lerners website and went over some of the publications there. Some interesting stuff, and some good information on EBV, thanks for giving me his name.

    I'm glad to hear the Valtrex helped you get back up and moving again, thats gives me some hopes of fighting this EBV. My doctor still hasn't gotten back to me with his drug of choice, however when he does, im going to let him know about the Valtrex and Dr. Lerners information.

    I have had two different Lyme tests done, I believe one was Igenex but im not sure. I did have one done at the Mayo Clinic however and it came back negative. And I never had any signs of a rash, so I don't think Lyme is the culprit.

    Im really lost between whether Chronic EBV does play a role in CFS. Most of the reports say there isn't enough evidence, but the symptoms are so alike. It makes you wonder if Chronic EBV really is something that I have. But according to my Dr. and blood tests it is, so hopefully anti-virals will work out.

    I wanted to ask you if you had any recent bloodwork showing the EBV completely gone, or if it still lingering around. And have you stopped taking the Valtrex? and if you stopped to the EBV symptoms return?

    Thanks again for your information, it means alot since im still learning about this.

    Take care,
    Trevor

  6. ANNXYZ

    ANNXYZ New Member

    Valtrex did help. Most people who have lyme NEVER get a bullseye rash . Many of them can not recall a tick bite . ( I can ) However, I never had a bullseye rash .

    There are many cases of lyme in Houston texas . Though there are not too many heavily wooded areas , there IS a BIG mosquito population , and there is speculation based on evidence that lyme is transmitted by mosquitoes .

    I did not think lyme was a possibility either . I had previous tests that were negative . I think you would be doing yourself a HUGE service if you got an Igenex test -
    they are the most accurate . AND , if you have at least two positive bands , then find a knowledgeable lyme doc .
    The CDC says that you have to have 5 positive bands , but the diagnosis is actually clinical. Most other places in the world consider two postive bands a strong indicator .

    There is a lot of contraversy over the CDC's spin on lyme . It does not jive with the experience of the many people who have it ( and many have been doctors infected ) or the treatment approach in other countries .


    I wish I had been given a relaible test for lyme years ago . The tests that have been given in years past are known to be INNACURATE to a LARGE degree .

    Hopefully , you do not have lyme . However , if you do , then antiviral drugs will not kill bacteria .

  7. deliarose

    deliarose New Member

    Question for u. What is teh name of the test you had done that diagnosed chronic reactivating EBV?

    Was it a PCR test or somethign more specific?

    And I was curious about your doc. I'm not sure about this, but it seems to me that very few mainstream docs, even ones who specialise in CFS, are willing to treat with anti-virals.

    I thought only the FFC and mabye Brewer and Lerner were willing to Rx Valtrex etc...

    Can you say who your doc is?
    Cheers
    Delia
  8. alaska3355

    alaska3355 New Member