CFS, Hashimoto's, & Dr. Dantini's Protocol

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by milliemay, Jun 18, 2013.

  1. milliemay

    milliemay Member

    I am new to these forums -- and so glad that I discovered them!

    My background: I have had CFS and Hashimoto's for 7 years. I have been treated exclusively through natural protocols, but recently started seeing a new integrative MD. She ran tests on me and discovered that I have titers 4 times the levels they should be for Parvovirus, Herpes6, and Epstein Barr. She recommended Dr. Dantini's protocol to me, or at least that I have a consultation with him. I am speaking with him tomorrow, am in the process of finishing his book, and am also conducting my own research on his methods. I am a holistic nutrition therapist, and am generally opposed to prescription drug regimens -- but am willing to be open-minded if the evidence is there to support it.

    I have read a few threads here and I am getting a generally negative feeling about Dr. Dantini's antiviral protocol. I am hearing mostly positive things about his food allergy testing and recommended diet.

    Would any of you who have had experience with Dr. Dantini OR treating CFS naturally care to comment and let me know what were the benefits and the negatives? I am particularly interested in detailed information regarding negative side effects of the antivirals (I am looking at Acyclovir if I do it). For those who treat naturally, I am looking for a comparable natural antiviral that may work as an alternative to Acyclovir.
  2. mbofov

    mbofov Active Member

    Hi milliemay - you might try tackling the viruses from a different angle - boosting your immune system instead of using antivirals (whether prescription or herbal). I had been fighting a chronic sinus infection for months with a ton of differnet things, including one round of antibiotics which did nothing. I don't know if it was viral or bacterial in origin. In any event, about 6 weeks ago I came across something called Moducare - it's a combination of plant sterols and sterolins and it is the first thing that has really made a difference. If you go on-line and read reviews, you'll find that they are generally glowing. It really does work. My immune system has been impaired for so long, I'd felt rather hopeless.

    Food allergy testing is great as well. I'm sure you've tried just cutting out wheat and dairy, two of the most common food allergens. corn also, for some people.

    The Moducare is supposed to be very good for autoimmune illnesses and thus might have some affect on the Hashimoto's, though I'm just guessing here.

    Mary
  3. milliemay

    milliemay Member

    Mary -- Thanks for that suggestion. I have used a variety of immune boosting supplements over the last 7 years, but nothing quite like Moducare. I will definitely speak to my doctor about that option. I think that an antiviral with an immune booster might be a good combo. I am trying to get healthy so that my husband and I can think about having kids in a few years.

    And yes, I have cut out wheat, dairy, corn and soy for several years now. I have bad reactions to all of those. The doctor thinks that there are other things I'm allergic to that I'm just not reacting to as strongly or immediately.
  4. Nanie46

    Nanie46 Moderator

    Although I tested positive for some viruses through testing by Dr Dantini, I did not improve with antivirals. I did improve with an elimination diet after the food sensitivity testing. I don't remember any bad side effects. About a year later my symptoms got much worse.
    A year after my symptoms got worse, I found out that my chronic symptoms were caused by tick-borne diseases such as Borrelia burgdorferi (Lyme disease), Bartonella and Rocky Mt Spotted Fever. I treated with a Lyme literate MD and did improve about 80%.
  5. IanH

    IanH Active Member

    Acyclovir will not do it. The viruses you mention need two different anti-virals:
    valacyclovir for EBVand valganciclovir for HHV6 and HCMV where present.

    However there is no specific antiV for parvovirus B19 but some cases have responded to valgancyclovir.
  6. RN66

    RN66 Member

    I've been sick at least since 1993. Spent thousands on doctors, supplements,etc. How did you find an MD to test for and also treatment literate for diseases you listed? Besides the food sensitivity tests, did Dr Dantini do anything special another (local) doctor cannot do?
  7. RN66

    RN66 Member

    You sound medically knowledgeable. Is there a speciality you know of that deals with these viruses?
  8. Nanie46

    Nanie46 Moderator

    RN66,

    I found a Lyme literate MD by going to lymenet.org.....clicking on flash discussion...signing up for free....clicking on the "Seeking a Doctor" Board...and creating a post asking for a LLMD in my state. I received a list via a private message. Then I contacted a LLMD who was a 2 hr drive from me and made an appt. By that time, I had already figured out that I had Lyme. I treated with the LLMD for 3 years.

    Dr Dantini did testing for viruses, food sensitivities and some other labs. He prescribed the antivirals and sent me instructions on how to do the elimination diet after I got my food sensitivity results. I had phone consults with him periodically.

    Dr Dantini was the Dr who was willing to order the Igenex Lyme western blot that I requested after I did not improve on antivirals and I had gotten worse. Local Dr's would not order it. When the result said CDC negative and Igenex negative, he told me I did not have Lyme.

    I knew better since I had read the paper, "Advanced Topics in Lyme Disease" by Dr Burrascano. In that paper, on page 7, Dr Burrascano lists which bands on the western blot are considered Lyme specific. I had some of those bands on my Igenex western blot. Below is the link to that very important paper:

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

    None of those Lyme specific bands showed up on my western blot through LabCorp because run-of-the-mill labs do not even test for most of the Lyme specific bands.

    After I realized that my symptoms fit those of Lyme disease, and I had some Lyme specific bands on my Igenex western blot, I found a LLMD and had a very thorough evaluation. (Most people do not have the Igenex western blot done until they see a LLMD).

    There were no local Dr's who would/could do any of this. They do not think outside the box and they are not Lyme literate. They also do not believe that chronic viruses or chronic tick-borne diseases are a problem. If I left my health care up to the local Dr's, I don't know if I would still be here.

    The best thing I ever did, was to do my own research regarding symptoms, not diagnosis. When I stopped researching FM or CFS, and researched my symptoms, I found the actual root cause of my symptoms and got better.

    Here is some more info that may help you:

    http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111


    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    http://www.ilads.org/lyme_disease/about_lyme.html
  9. IanH

    IanH Active Member