Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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New drug against herpes viruses to cope with CFS

Discussion in 'General ME/CFS Discussion' started by Nordman, Dec 15, 2015.

  1. Nordman

    Nordman

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    I am 38 years old, was born and grown up in Russia, Siberia ( winter it is VERY cold there), now living in Germany. Perhaps I was infected with herpes viruses as a small child. From my 13th year I suffer from chronic fatigue syndrome (CFS), which is most probably caused by herpes viruses № 4 (Epstein-Barr), №5 (Cytomegalovirus), №6 and number 7.

    I have been researching this issue for quite a long time, was unsuccessfully treated by some medical professors in Russia, and came to conclusion, that the only thing could help me is a new ”anti herpes drug”, so my future thoroughly depends on the scientist, who are developing this sort of drugs, and pharmacy companies, who organize and finance this processes.

    To create a new drug, pharmaceutical companies have to invest lots of money in research and then into production. Doing this will bring profit only if there is a large market of potential customers.

    Lots of people in the world suffer from fatigue, some of them surely because of the herpes virus group. The main part of people with CFS in the world do not know the true cause of their illness.

    Interests of us (people suffering from herpes), and interests of pharmacy companies are the same at this matter. The sooner lots of potential patients claim about their interests - the faster a new drug will be created. If we help companies create a large market of consumers - we help ourselves. In most European countries and in north America it is no matter how rich the patient is, all the citizens have medical insurance that will pay for medications (so is in Germany).

    I do not know exactly what I can do to achieve this goal, because I am alone with my problem. But I'm a creative person, very much motivated, well educated and I don't want to give up.

    If there are people who also suffer from herpes and ready to struggle with it - let us come together and think - what we can do, let's try to make our contribution to the victory over the virus, that terror so many people in the world.


    P.S. I am very much impressed how big and informative phoenixrising community is. I bag pardon for my bad English, would appreciate if someone suggests how to correct my message and make it more understandable.
     
    ErdemX, leela, ahmo and 8 others like this.
  2. Theodore

    Theodore Senior Member

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    Dear Nordman,

    Thank you for bringing this to the forum.

    The vaccine of Dr. Tod Ridder is already effective on two different types of H1N1 influenza, four types of rhinovirus, two adenoviruses, dengue hemorrhagic fever and others.

    Now he is raising funds to optimize his vaccin (named DRACO) for the herpesvirus family and has raised 51.000 dollars with the platform Indiegogo.

    It's not enough at all but maybe if we can be sure that this vaccin will be successful in killing the herpesvirus family, we can crowdfund it ourselves.
     
    Last edited: Dec 17, 2015
    PennyIA, ahmo and xrayspex like this.
  3. Sidereal

    Sidereal Senior Member

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    Hi, welcome to the forum. I'm just curious, if you wouldn't mind sharing, what sorts of treatments were used in Russia for your condition.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I started a recent thread on new antivirals coming out for shingles which is from varicella zoster virus which would probably have a carry over to other herpes viruses. Its called FV100.

    Also cmx001 is suppose to be being released next yearcwhich has broad spectrum antiviral effects.
     
  5. sorin

    sorin Senior Member

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    Hi @Nordman ! How do you know that your disease is caused by EBV, CMV, HHV 6 ...? Did you test positive on these? Do you have a viral load to have an image of the scale of the infection? Do you have all the symptoms that compose the picture of CFS?
     
  6. minkeygirl

    minkeygirl But I Look So Good.

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    Previous posters from Russian and Ukraine have said immune modulators, are widely used there. I also think immunoglobulin.
     
  7. Nordman

    Nordman

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    Correct, Immunoglobulin, Interferon alpha and gamma, T-cells (from animal's blood, I forgot the name). All with a little success at the beginning, but not more then that. Also they tried IL-2 (interleykin 2) commercial name ronkoleykin, which gave me big problems, because temperature reaction was very tough: 39-40,5 Celsius that means about 102 -105 Farenheit, for many hours.

    In Berlin there is the Europe's biggest clinic Charite, and they have immunological consultation
    http://immunologie.charite.de/patientenversorgung/immundefekt_ambulanz/sprechstunde/
    I have been once there, they have very little time for each visitor (15-20 min), you have to wait 4-5 months before you have an appointment. They made very big and varied blood test, that showed problems in immune system, but they told me that it is OK, "almost everybody have very big IgG to EBV, so I am healthy" I have an imression that they are just overhelmed with number of visitors, probably they have yet too little finance.

    Is it possible to find members here who speak your language or come from your country? I didn't find this option. It would be useful to exchange aur experience with them.
     
    Last edited: Dec 16, 2015
  8. Nordman

    Nordman

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    Berlin
    Hi Sorin, some general practitioners told me that I have CFS and that most probably it caused by herpes viruses. I have very big IgG for EBV, CMV, HHV-6 and 7 (20-30 times more then normally). And Immunogram show always some problems (too much B-cells, too little T-cells, to little Interferon Alpha usw.)
     
  9. Nordman

    Nordman

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    Hello Theodore,
    unfortunately I have not enough knowledge to understand if DRACO is good or not quite good. It makes impression of being something serious, I hope it is really so. I will ask doctors that I know personally what do they think about that.
     
    Theodore likes this.
  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @Nordman, welcome to the forum. I don't believe this forum has areas for members who speak a certain language or come from a particular country. However, I would bet there would be quite a few members who might speak German or Russian. You could start a thread here
    http://forums.phoenixrising.me/index.php?forums/introduce-yourself.35/
    and put in the title "Does anyone speak German or Russian and wish to communicate?"

    I think it would be a great idea to have separate areas of the forum set aside for different languages. I'll let one of the moderators know this question has come up.
     
  11. Kina

    Kina

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    No this question has not come up. Since we are based in an English speaking country, most of our members are English speaking and we cater to that. If members want to have a private forum for something, they can always start a Conversation with me and ask.

    If a member wishes to find other members to speak with in a language other than English they can do as @CFS_for_19_years suggested -- start a post in the 'Introduce Yourself' forum. It might be an idea to start a 'Group' where you can control the option -- private vs public, invite only or anybody is welcome, etc. I see a group has already been started for Russian speaking members :thumbsup: -- http://forums.phoenixrising.me/index.php?xfa-groups-home/
     
    CFS_for_19_years and Valentijn like this.
  12. sorin

    sorin Senior Member

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    Hi @Nordman ! I have also very big IgG for CMV but because my IgM was in range, the doctors told me that this means past infection and no current infection, so no treatment. I suppose they did a mistake but this is what they learnt in school, so unless some medical authority change the theory, they will keep saying this. Same problems with CD8 which is high, over the normal maximum, but again, because they did not learn anything in school about high CD8, they prefer to say "it is not relevant".
     
  13. sorin

    sorin Senior Member

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    Unfortunately I had dozens of similar experiences with yours. The sad truth is that these doctors do not know anything, they just pretend to do "science" in order to become rich by exploiting the exasperation of poor patients.
     

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