My FM getting better with antiviral med and special diet

Discussion in 'Fibromyalgia Main Forum' started by Nanie46, Apr 9, 2007.

  1. Nanie46

    Nanie46 Moderator

    I have had fibromyalgia for 20 years. I always knew that it developed after I had a very bad respiratory infection. I never wanted to take medications to cover up symptoms. I always was looking for the cure. I am a nurse and I had faith that if I ever found a Dr who believed the viral theory and would test and treat it that way, that I would get better. In Feb I found that Dr. I started consultations with him, had bloodwork for viral testing and for delayed food allergies(common things you can easily become sensitive to which also contribute to pain, stiffness, IBS, headaches, etc). My viral testing results showed 5 viruses in high levels. My delayed food allergy testing showed that I had become sensitive to 22 of the 88 foods tested for. I never would have guessed that foods also contributed to the intensity of the pain and stiffness. I have been on the antiviral med for one month. After 12 days on the med, I no longer had that overwhelming feeling of fatigue and lethargy. I had to eliminate all 22 foods out of my diet for 6 weeks. This has been very hard since sugar, milk, wheat, and corn were just a few of those foods. Next week I will start putting these foods back in my diet one at a time to see how each one makes me feel. I can tell you that I feel much less stiff,achey and sore and I'm not exhausted. I will continue the antiviral med for a total of 3-6 months and then as needed if symptoms appear. The Dr has had alot of success treating patients with FM and CFS this way. He had fibromyalgia himself 20 years ago and was able to cure himself with this treatment.
    [This Message was Edited on 04/09/2007]
  2. joeb7th

    joeb7th New Member

    Is this possible?
  3. Nanie46

    Nanie46 Moderator

    The Dr's name is Daniel Dantini and he is in Ormond Beach, FL. I do not live in FL. He does phone consultations. He is on the up and up. He realized that he can help so many more people by doing this. You are free to check out all the information at www.4fibromyalgia.com. That is his office website about FM/CFS treatment. The related website about delayed food allergies is www.sagemedlab.com. Believe me, I would never have done all this if it wasn't legitimate. I am a nurse and I knew from reading through all the very thorough info, that he knew what he was doing. Some has been covered by my insurance and some has not.
  4. Nanie46

    Nanie46 Moderator

    It is interesting to note that Dr Dantini initially had success curing his own fibromyalgia with only antiviral meds and later relapsed. It is then that he realized how much food was contributing to his pain etc. He tested himself for delayed food allergies and followed a special diet along with the antiviral meds and got better again. He really feels that both are important to getting completely better and staying that way.
  5. sturg1

    sturg1 New Member

    Hi Nanie46!
    Thanks for sharing your success! It is encouraging!

    Which anti-viral did the dr take and are you on the same one?
    Thanks so much,
    Sturg
  6. Nanie46

    Nanie46 Moderator

    I'm not sure which antiviral the Dr took. He prescribed Famvir three times daily for me, based on the specific combination of viruses that my viral testing showed. It is expensive, even with my co-pay, but I've waited 20 years to try this.
  7. pawprints

    pawprints New Member

    Thanks so much for sharing your positive experience. It sounds like you may have had CFIDS and Fibro since your feeling better with the antivirals.

    Can you tell us the Famvir dose you take 3 x day?

    Awhile back I remember others posting about this doctor as well. You can do a search to read what they had to say about their experiences.

    Best of luck with the diet!
  8. Nanie46

    Nanie46 Moderator

    The dose I am taking is Famvir 500 mg three times daily.
  9. sturg1

    sturg1 New Member

    Nanie46, thanks for the info about the anti-viral. I am taking Lauricidin right now. It is a natural anti-viral. I herxed when I started, so I know it is doing something.
    Take Care,
    Sturg
  10. Issa77

    Issa77 New Member

    What virus are you taking the Lauricidin for??
  11. ravenpaige

    ravenpaige New Member

    Just wanted to thank you for your post. I've been thinking about responding for a couple of days. There are so many "snake oil salesmen" out there, that it's difficult to know what to believe, but I do think you may be on the right track. I know my fibro/CFS improved a lot when I cut out wheat and corn a few years ago. However, I've since reached a point where it doesn't seem like I can improve, and occasionally still have terrible flares (just got through with one). After researching, I think that the antivirals may be the part that's been missing (at least for me). So please keep us posted on your progress.

    I am especially interested at how this is handled with you with phone consultations. Since I haven't found a local doctor who seems to know much at all about fibro/CFS, I've considered going a distance. But that has it's own problems, since I'm the single mom of two kids (teenagers now). The phone consultation would be great for me, but I'm worried about testing for reactions/problems with the antivirals. Do you have a plan in place for this?

    Thanks again for all the info.
  12. Slayadragon

    Slayadragon New Member

    So happy to hear from a successful Famvir user! It's been a struggle for me to be able to tolerate 1,000 mg, but I've got a lot of viruses to knock off. I'm so happy to hear that you're doing well.

    Obviously your doctor has a lot of experience with this drug and can give you good advice, but I would think twice about stopping it too soon. There have been a lot of people (especially FFC patients) who have gotten good results with antivirals and then stopped them after a few months, only to relapse.

    I think perhaps that once the viral load goes down, it takes a while for the body to rebuild itself to the point where it can handle the viruses on its own. My doctor (Dale Guyer) also tends to pulse it for a while, I think to allow the immune system to get up and running slowly rather than to allow the viruses to suddenly multiply faster than the body is anticipating.

    It would be interesting to hear your doctor's thoughts on the topic.

    I've also had great results with regard to tackling food allergies. It was one of the best things I've done so far to get my health back to a moderate level. It will be interesting to hear how you do when you attempt to reintroduce the foods too. (My own experience is that a lot of the reactions were so strong that I never had the desire to eat some foods ever again. An strong adverse effect paired with a particular stimulus is a great avoidance motivator.)

    Please keep us informed with regard to how you're doing. I'm really happy for you!

    Best, Lisa
  13. Nanie46

    Nanie46 Moderator

    Thanks. The phone consults are set up by the office staff. Then the Dr gets on the phone and you pay for the time when you are talking to the Dr. I pay by credit card. Next week I will have my third consultation. It isn't cheap, but it is worth it to me. I'm not sure if I know what you are asking me about testing for reactions/problems with the antivirals. If I understand you correctly...the Dr said a small percentage of people experience an upset stomach and a smaller percentage experience headache. He said to take each dose after a meal. For the first 2 days I did notice an occasional feeling of pressure in the frontal portion of my skull(like I had a headband on), but then nothing after that. I filled my first prescription for only 5 days worth of med, just in case I couldn't tolerate it at all. Now I fill it weekly since it is very expensive. The Dr said that after my initial 3-6 months, I may need to take it off and on for a couple years.
  14. Nanie46

    Nanie46 Moderator

    Thanks, Lisa. I think that the Dr would say that you have delayed food allergies to many other foods that you don't even realize and new ones can develop over time. Most people eat the same foods all the time and he says this is how the allergies develop. I have to rotate my foods, eating each food only one day out of every 4 days. The Dr said he initially got better, then relapsed because he didn't realize at the time he had delayed food allergies. Then he got better and relapsed again. It was then that he realized that he had developed new allergies from eating foods frequently. He tested himself again and now avoids even more things and rotates foods. I think cane sugar is a very big one for alot of people, along with wheat, corn, milk, etc..but everyone is different. I never would have guessed all the things I have delayed allergies to.
  15. gwenn-aelle

    gwenn-aelle New Member

    hi manie..
    i'm on the same diet than you, it's been almost 2 years..and it works...
  16. gwenn-aelle

    gwenn-aelle New Member

    hi manie..
    i'm on the same diet than you, it's been almost 2 years..and it works...
  17. pawprints

    pawprints New Member

    Thanks for the dosage information. The rotation diet seems difficult but worth it. When your energy was low in the beginning was a struggle for you to cook, shop, etc. to keep up with the eating plan? It is true even though some of us eat healthy we do tend to eat the same foods again and again, like chicken and lettuce.

    Some people have a Herx reaction...where their symptoms get worse...as they take the antiviral and kill off the viruses. It is also called a die off reaction. I am sure some of the others who have been on the drugs can explain it better.

    Once again, keep getting better!

    Did Dr. D ever mention that you had CFIDS or classic Fibromyalgia?
  18. Waynesrhythm

    Waynesrhythm Member

    Hi Nanie,

    Thanks for your post and congratulations on your success!

    Was wondering if you could give us some specifics on the cost of the meds and the cost of the consultations.

    Thanks much.

    Wayne
  19. pawprints

    pawprints New Member

    Bump...Bump
  20. Nanie46

    Nanie46 Moderator

    The viruses that the Dr tested me for are:
    EBV profile
    Varicella Zoster IGG
    CMV IGM
    CMV AB IGG
    Varicella Zoster IGM
    EBV EA AB
    Herpesvirus 6 AB panel
    Herpes Simplex Type 1 & 2
    Parvovirus B19 AB,IGG,IGM
    My local hospital lab drew the blood and sent it to the Mayo Clinic for testing. Good luck talking your Dr into ordering these tests for you!