1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Article: A Fibromyalgia Doctor Steps Out: Dr. Dantini on Treating Fibromyalgia and CFS with Antivira

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 30, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,012
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    Cool, i have been wanting to find out more about Dantini's treatments as i hear he favours famvir, my av of choice. interesting to see him talk about other treatments besides av's and strengthening the immune system.

    cheers!!
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    Glad to hear it heapsreal...I've never really heard of famvir. Do you know how its different? And why you do you favor it? That's what worked for Caroline.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    Someone else on this board saw dantini and he said that famvir was only indicated for shingles and genital herpes as these are these quickiest ways to get it to market, but they have found it effective against, ebv,cmv and hhv6. others have seen there hhv6 titres drop with famvir and i have had some good results with cmv. In the broken marionette book she mentions its effective against retroviruses but i havent been able to find any studies on this, but did find studies where it was effective against hep B.

    cheers!!!
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    That's the voice of experience from Dantini there - trying to out on other types of patients and finding that it works. I wonder if it works better and some people on valtrex would do better on Famvir?
  6. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Still taking in but what a find Cort. Very helpful, many thanks.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    8,083
    Likes:
    6,892
    UK
    Very interesting article, Cort. Both hopeful yet frustrating for us in the UK where the NICE (National Institute of Clinical Excellence) guidelines specifically rule out the use of antivirals for ME patients.

    Our only hope for antiviral treatment would presumably to show a high titre of one of this viruses but if high titres are viewed as normal even in the presence of severe illness then we won't get treated.

    If only there was a doctor anywhere in the UK who would offer such treatment but I've never heard of any. Has anyone?
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    search the internet pharmacies for antivirals, its a shame that we have to go this route but alot of use are left to self treat. 4rx.com are a reliable source that i have used.

    cheers!!!
  9. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    I find it curious that doctors serious about helping M.E. patients don't do a full panel of testing for viruses and other infectious agents. Why the inconsistency between one doctor and another as to what is their 'favourite' pathogen/s to test for?

    Surely more progress would be made in really knowing what is harboured in M.E. people, if all the common pathogens were investigated - waaay too simplistic I know (even as I write this)!

    Any ideas?
  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    If we could get some placebo controlled double blinded successful studies I assume that would change. It will also help if the Lipkin pathogen study comes back positive - I think that will be a key study.

    There's alot of work to get any of this into the mainstream - so that most people have access to it. These doctors really operating on the fringe, so to speak; they believe that readings other doctors don't believe mean something and then they provide antivirals for much longer periods.

    Study evidence is the key to getting these type of therapies into the mainstream. Dantini's work won't do and neither will Lerner's, I have been told - unless he can get more statistically rigorous studies together

    They have to figure out which types of patients antivirals work for, the right antivirals to use, etc. Dr. Lerner opened the hopes of many and stimulated interest in the field but it will probably be people like Lipkin and Montoya who will hopefully make it mainstream..
  11. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    Any idea as to when the Lipkin/Montoya study will be completed?
  12. m1she11e

    m1she11e Senior Member

    Messages:
    309
    Likes:
    87
    Florida
    I did a phone consult with Dr. Dantini about 2 years ago. He is the one who told me Famvir is actually effective for HHV6. I got really sick a couple of weeks after starting the Famvir but also had moved into a new condo. I called Dr Dantini's "patient advocate" who at that time is who all of his CFS/ME people dealt with. You dont deal with his regular office staff. This woman explains CFS and the viral connection as if you are 2 and it is obvious she really knows very little herself other than the basic info she was given. She is very much a a sales person with her learned dialogue. She had NEVER heard of Valcyte and NEVER heard of anyone getting sicker from the anti virals at first.

    When I called to ask if getting this sick only a few weeks into the Famvir was "normal" or acceptable, Dr. Dantinis "patient advocate" told me that she had never heard of anyone getting sicker first. I was shocked and explained some different theories on why some people think it happens. She just got very stern and told me IT NEVER HAPPENS. She them told me that maybe I had over done the sweets on Easter. :rolleyes: I hadnt, and even if I had I truly doubted it would cause the severe numbness, dizziness and other symptoms that had hit me like a freight train. I was shocked she didnt think it could possibly be due to the anti viral. At that point I chose to not deal with their office again. She knew nothing and was so very condescending.

    Eventually I found out it was the new condo making me sick. I currently take the Famvir from a doctor who usually prescribes Valcyte. I didnt get sicker at first this time on Famvir. My HHV6 has gone way down. I am glad I talked to Dr. Dantini originally but I was not happy when I had to deal with his patient advocate. Also, Dr. Dantini is popping up advertising all the time and I started wondering about his credibility. Even this novel that is supposed be from one of his patients I wondered if was something Dantinis office came up with for advertising. I just wish he would do less advertising for his office and actually advocate more for the patients. If it is true that he has the high percentage of results he says he does, why doesnt he attend any of the HHV6 or CFS/ME conferences to get his protocol out??

    Anyway, I just was surprised to see him on here because he says he has this really high success rate but I can never find anyone that has been to him besides myself. Id like more doctors to know if Famvir really is working against HHV6 since Valcyte is so toxic. It seems only Dantini has that info????
  13. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    I went to see Dr. Dantini a few years ago when his name first popped up and he reported a high success/cure rate. In the 80's and 90's I saw Dr. Cheney exclusively for 15 years so I've experienced a true CFS expert.

    Dr. Dantini does food sensitivity testing, and told me if I didn't get better from not eating the dozen or so items on my sensitivity list that I WOULD NEVER GET BETTER. (The items on my food list are foods I don't eat anyway!)

    He has ZERO knowledge of what other CFS specialists are doing around the country.

    He claims he can CURE AUTISM with the food sensitivity tests.

    In my opinion, Dr. Dantini has so business treating CFS. I'm with Michelle on this one, and question his relationship with the books author.

    God help you if you hitch your wagon to his treatment plan.
  14. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    Don't know - I believe they have all the samples - so hopefully they are working on it now.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    hi m1she11e,

    I keep forgeting you but you are the person im refering to that had success with hhv6 and famvir, i not sure though if it was you who said that Dantini stated that drugs like famvir are marketed in a way to get them to market quicker but are effective for other conditions but to hard to market for some conditions like ebv/cmv/hhv6 for which they work on and so some docs use them off label then. Im puzzled why famvir isnt used more often, maybe docs arent familiar with it.

    As for testing for viruses, hopefully something comes from Montoya.

    cheers!!!
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC

    She was not a very good advocate. I don't have any worries about the author. I've spoken with her quite a bit and I know she doesn't work for Dr. Dantini.

    He seems very attuned to the FM audience. Even his book is called the "New Fibromyalgia Remedy". I think he's probably like a lot of CFS/FM doctors...he's got his own practice, he's developed his own protocols and he's doing this all on his own.

    Its hard to know about 'success rates' since they are often not defined...if a patient gets better and is still sick - they may call that a success.

    But how are you doing? Your HHV6 is down - if that virus really is a big deal - it should have helped - has it had any effect on your health?

    Phoenix RIsing is developing a physician review program - it will be VERY interesting to see how the different doctor's do.
  17. m1she11e

    m1she11e Senior Member

    Messages:
    309
    Likes:
    87
    Florida
    Hi Heaps!

    Yep, Im the one that was told that by Dantini. It was very hard for me to get Famvir. Oddly, Dantini got it for me by appealing my insurance denial. He has that figured out. My current doc couldnt get it approved for me. It is only approved in that high of a dose for immune compromised people with the other Herpes virus.' I got it because I had some immune compromised test from a year ago and I get numbness in my face that my doc has diagnosed as Herpetic (spelled wrong?) optic neuritis. We fought the insurance for over a month but I got it approved. My insurance would approve Valcyte in a second.

    My doctor still doesnt prescribe Famvir for HHV6 or CMV even though he has seen my numbers come down. It appears only Dantini has the 411 on that and he doesnt share with other docs like Montoya does.
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    :eek:...In his defense he has managed to develop a treatment plan that's quite similar - at least regarding pathogens - to what Dr. Lerner and Dr. Peterson do. I go get, though, that his protocol sounds much more limited than what Dr. Peterson would do...I agree there. Dr. Dantini wrote a kind of short, easy book - I imagine Dr. Peterson's book would be much thicker :cool:

    ON the the other hand my guess is that food sensitivity is something that these other doctors don't do. The first doctor I saw was big on allergens - I went to her after meeting somebody who'd had a miraculous cure....unfortunately it did not work for me at the time.

    It makes me think of all the subsets in these disorders.

    By the way I interviewed the author of "Chronic Fatigue Syndrome A Novel" about the book and in doing so I found out how she had been greatly helped. That got me digging into Dantini - who'm I'd never heard of. I've actually been talking with her for awhile - I'm sure she's legit. I just wish everybody who has taken these drugs had as dramatic a recovery.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    if dosing is a problem u can look into a drug called probenecide which can increase the blood levels of famvir and increase the half life of famvir. This strategy can help safe money by being able to reduce dosages of famvir. If u get stuck trying to get famvir, let me know has i have a reliable internet source of famvir (cheapest i can find)that has helped keep my lyphocytes down.

    cheers!!!
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    Yes cort subsets and multiple co-infections. I also think we need something for our immune systems like ampligen/immunovir/cycloferon etc

See more popular forum discussions.

Share This Page