POLL: Positive for HHV-6?!

Discussion in 'Fibromyalgia Main Forum' started by Plantscaper, Jun 30, 2003.

  1. Plantscaper

    Plantscaper New Member

    According to research, the HHV-6 can very much account for neurological symptoms..Usually, we are all exposed at an early age, but it becomes a reactivated infection in persons with our DDs and MS..I'm sure many of you are already aware of these facts..

    I wondered how many have been tested and are positive for this, maybe, as an reactivated disease? Have you been treated with the antiherpes drugs, like Famvir, and has it been successful? or is Transfer Factor effective?

    Plantscaper
  2. Mikie

    Mikie Moderator

    You know my story, so I won't repeat it here, but I am still on the Famvir at 250 mgs. twice a day and still Herxing and feeling tired.

    Most docs are not aware of the HHV6 and its implications in our illnesses. My specialist is very good but he had never heard of HHV6. I took him some reading material on it. He believes that the reactivated EBV is often to blame for our problems.

    Unless I ever get tested, I will never know which of the viruses is the culprit. I don't care so much as I just want to get rid of the fatigue and cognitive problems so I can return to work. The FMS part of my illnesses is well under control most of the time, but the fatigue and cognitive problems are the worst.

    I will keep y'all updated as I continue using the Famvir.

    Love, Mikie
  3. nancyann14

    nancyann14 New Member

    I was diagnosed with HHV6 several years ago through blood tests and cultures of spinal fluid. After treatment I have been free of active 6 disease according to additional diagnostic tests. I do take famvir daily and that seems to keep this virus in the shadows of my body. This virus appears all around the world and fortunately many docs and researchers are working hard on this one. Nancyann
  4. Plantscaper

    Plantscaper New Member

    Would Famvir be more effective than the Transfer Factor C, anyone?

    Thanks to all of you that have responded so far...

    Plantscaper[This Message was Edited on 06/30/2003]
  5. Mikie

    Mikie Moderator

    I can't compare. Plus, I haven't been on the Famvir that long yet. I did go into a remission the first time I tried it, but symptoms reappeared when I stopped. I've had some rough Herxing with this, so I must have some big-time beasties in my bod.

    Madwolf, is there a reason you prefer trying the Transfer Factor C over antivirals?

    Love, Mikie
  6. victoria

    victoria New Member

    and I readily admit I don't know anything about HHV6 really,

    BUT

    does lysine have any effectiveness with HHV6?

    Just wondering,
    Victoria
  7. Plantscaper

    Plantscaper New Member

    Hi Victoria,

    I think Lysine is effective with herpes-caused cold sores..There are many herpes viruses...I take Lysine in my supplements..don't know if it would be strong enough to help counteract the type viral infections we have that have probably gone stealth, at this point.

    Plantscaper
  8. Plantscaper

    Plantscaper New Member

    I don't have a good doc and am looking for one, near Denver or Colorado Springs, Colorado that will test/treat for HHV-6...Where is your physician and does she/he have a great deal of knowledge on this subject or are you self-taught like the rest of us...Do you think it is the Famvir or the Immunovir or both that is the most effective?

    Looking for answers,
    Plantscaper
    [This Message was Edited on 06/30/2003]
  9. urge2soar

    urge2soar New Member

    Hello to All,

    Just my 2cents worth...I have had two bloodtests for HHV6
    and both came back so high the computer could not count them. No wonder I feel lousy.

    I have tried Valtrex and most recently Famvir. The Famvir made me sick to my stomach. After some additional reading and a heart-to-heart with my doctor, he admits that neither of the above drugs with rid the body of the virus. As you probably know it is a stealth virus and hides in the cells.

    He told me that there will be a new drug trial for those with high HHV6 levels. It is an IV therapy. Certainly, I would be interested. He has retested and when I return will find out where the trial is going to take place.

    I will post what I learn. I just feel that this is something we all need to get under control....and they know it too.

    I would love to hear what Madwolf has to say on the subject of the trial and if he has heard of it.

    Many Blessings to you All,

    Soaring
  10. Plantscaper

    Plantscaper New Member

    According to Soaring, would like to know if you know about I.V. Drug Therapy Trials for HHV-6?!! Please see her above note on the subject...I would volunteer!!!

    Plantscaper
  11. tulip922s

    tulip922s New Member

    I have brought up HHV-6 to 4 doctors and all have blown me off and said that is not the cause of what you have. Just adding my 2 cents. Tulip
  12. Plantscaper

    Plantscaper New Member

    And take a whole busload of patients to see Dr. Peterson, Lahoe, Nevada or someone of his caliber, enmasse, to get some testing and treatment begun!!!!! Wonder if we could get a group rate!!! Who wants to go as I am planning some kind of coop this year...From those who know him, think he will give up a group rate?!

    Plantscaper will travel...just in case, you think I am kidding, there will be a signup sheet, later today, if anyone is interested..got to go to dental appointment, so see ya later!!!
    [This Message was Edited on 07/01/2003]
    [This Message was Edited on 07/01/2003]
  13. Plantscaper

    Plantscaper New Member

    Please let me know where those trials are going to be...very interested...Are they probably in California?
    There might be a way I could go there for that...Are you in the San Diego area?

    Plantscaper
  14. urge2soar

    urge2soar New Member

    Hello to All,

    I live in California and I am assuming that they are here. I see the doctor on the 17th and will definitely give more information.

    Soaring
  15. dannybex

    dannybex Member

    Hello to all,

    Does anyone know why Immune Transfer C is so expensive -- 4 to 5 times the price of Formula 540 or 560, and some of the others? Seems like price gouging to me.

    My doctor wouldn't test for viral loads, she said mainly because they're probably there, as they show up in almost every patient, symptomatic or not, although I suspect the main reason is the HMO she works for limits the tests she can run, and doesn't authorize any HIV drugs for CFIDS.

    I did read that the reason products like ImmPower and MGN-3 only work for 30-50% of patients is because they only work if your CFIDS is mainly due to a viral cause (rather than chemical, pesticide, etc.,) so perhaps they might be something to try if your viral load is high.

    And I would guess (although I'm not a doctor) that a trial of lysine would indeed help, at least somewhat, with any type of herpes infection, but that's just based on a common sense guess. I do remember reading that author Cameron Stauth used extremely high doses of lysine (and I think some vitamin C?) to recover from chronic fatigue. That, and changing his life to reduce stress as much as possible.

    Just my two cents.

    Dan B.
  16. Mikie

    Mikie Moderator

    That by the time we receive treatment for stealth pathogens, they have usually been wreaking havoc in our bodies for years. It takes a lot of meds and a lot of time to get them under control. In the case of mycoplasmas, it is possible to rid the body of them in time.

    This, as most of y'all know, is not the case with Herpes-family viruses. Remember the old joke, "What's the difference between true love and Herpes? Herpes is forever." Whether or not you find this humorous, it's, unfortunately true, at least the part about the Herpes.

    With time and meds, it is possible to reduce the viral load and whip these critters back into submission (latency).

    I believe it is absolutely essential to take supplements which help retrain the immune system to go after pathogens. Colostrum, whey, and transfer factor all do this. The fact that I now Herx when I go off my meds is evidence to me that my body is now able to recognize and kill pathogens in my system. I take colostrum and whey every day.

    I also believe that as soon as one is able to pulse off the meds, one should and stay off them until symptoms start to return. This seems to kick the immune system into gear and also seems to confuse the pathogens.

    Love, Mikie
  17. Plantscaper

    Plantscaper New Member

    Hi Mikie,

    Did you, ever experience the complete remission of all your symptoms with the reintroduction of the Famvir, like with your surgery? and do you herx on the antivirals like the ABX? It sounds like we will have to keep usng these drugs on and off for long periods of time..

    Plantscaper
  18. Mikie

    Mikie Moderator

    No, unfortunately, I have not had the remission. I have had such a difficult time, first with the Red Tide, then the mold, and finally the sinusitis, that I don't believe my body has had a chance to recover sufficiently to go into remission.

    I do pulse the OLE tea, as well as the colloidal silver. The immune system builders, I take all the time.

    Now, it appears I have a tooth going bad. Since late yesterday, I have been in a lot of pain with it. I will see the dentist tomorrow and would bet it will need a root canal. I've already started taking the Doxy again because the dentist will want me on antibiotics anyway. I'm just now Herxing from taking the meds away, so I'm upset to have to go back on them, but I sure don't need more infection in my system right now.

    I think the ABX sometimes mask infected teeth and can cause a drain (no pun intended) on the system until the infection comes to the fore and is identified. That is what happened the last time I had to have a root canal. Oy, it's always something.

    Love, Mikie
  19. BILLCAMO

    BILLCAMO New Member

    OF PWC'S THAT TESTED POS. FOR HHV-6 , EBV ,FUNGII IN BLOOD( BOTH WHITE & BLACK)& SLEEP APNEA CAUSED BY CFIDS...... FOR THE HHV-6 , MY DR. TRIED SEVERAL THINGS INCLUDING BRADFORD PROTOCOL IV'S 1 & 2. NO LONG TERM GAINS FOR ME EXCEPT FOR DRAINING THE POCKETBOOK. BILLCAMO.(FOG BANK ROLLED IN , SO I HAD TO SIGN OFF FOR AWHILE.) PS..... JUST HAD TO GIVE SOME POSITIVE INPUT...... ONE THING MY DR. HAS PRESCRIBED FOR ME THAT HELPS WITH ENERGY LEVELS IS INJECTABLE B-12.. FOR ME THE RESULTS ARE NOT DRAMATIC OR QUICK , BUT THERE IS A NOTICABLE INCREASE IN ENERGY. AT FIRST I WAS'NT REAL THRILLED W/INJECTING MYSELF..... BUT I FIGURED THAT IF DIABETICS CAN DO IT , SO COULD I. THE GAINS FOR ME HAVE BEEN GRADUAL. I HAVE STOPPED THE INJECTIONS FROM TIME TO TIME , JUST TO MAKE SURE GAINS ARE NOT JUST IN MY HEAD. IN MY OPINION , THE GAINS ARE REAL. NOT ENOUGH ENERGY TO WALK A MILE , BUT ENOUGH TO GET A FEW THINGS DONE. HOPE THIS INFO. HELPS SOMEONE. ADIOS !!!!!
    [This Message was Edited on 08/03/2003]
    [This Message was Edited on 08/03/2003]