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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. m1she11e

    m1she11e Senior Member

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    Hi Cort,

    I cant seem to get that reply with quote thing to work...:confused:

    I dont really think my HHV6 coming down from a 65 times higher than a positive to a 3 has impacted my health so far. I get tested again mid April. My doc would still like me to do Valcyte. There is just no info out there on Famvir so I had to really push to try it. Maybe it will take time, like it has taken some people on Valcyte to get better?? I certainly dont take it easy on days I feel better like Montoya suggested his Vaclyte patients do. I enjoy every decent hour I have so maybe that is why I am not feeling recovered?? I also have the Mycolplasmas and a Lyme doc said my negative Igenex test was actually positive...:rolleyes:

    As far as me being so negative on this Dantini thing...I have NEVER been negative about anyone on these forums. I was just so sick at the time and after spending a lot of money on a phone consultation, all I get is this woman telling me (in a very slow, loud, methodical tone) that people only get better on anti virals and I was the first person in the history of the world to report such a phenomenon. She even asked Dr. Dantini directly and I got a quote on how many patients he has treated and how none of them got sick on Famvir, or Valtrex. It had to be my consumption of PEEPS for Easter. (Sarcasm...I eat VERY healthy) I literally sat and cried because that is all the info I got. I could find no one else who knew anything good of Dantini and everyone I found said that Famvir wouldnt work for HHV6 so Dantini must be a quack. I was stuck in the middle with no help on either side. ODD, this gripping story talks about this woman feeling way worse on anti virals at first. That really shocked me to see. I guess she must be the second person in the history of the world to experience this phenomenon. (Maybe she too was eating those darned PEEPS...????)

    I really feel if was a doctor that had CFS/ME at one time and I knew Famvir worked and I had an amazing percentage of cures, I might do all I could to meet up with the other top CFS/ME docs and get the word out. Thats just me though. :innocent1:

    I will update when I get my HHV6 count again as I think the important info here is if Famvir really does the tirck...
  2. Cort

    Cort Phoenix Rising Founder

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    You definitely had a bad experience with that woman. She sounds kind of like a nightmare! Hopefully she's not there anymore. It sounds as if Caroline talked to somebody else.

    We are really in an uncertain period aren't we? Here Dantini is trying Famvir on people with different kinds of herpesvirus infections than it was intended for - so some people will think he's a quack..others might think he's being innovative and going on his experience...

    I also see these people in small offices trying to figure this out on their own...sometimes they have good help and sometimes they don't. I had a real problem with one of Cheney's office workers at one time - she was kind of brutal...:(

    Boy do we need some real research! Good luck with your antivirals. If HHV6 is down is something else up that needs attending to?
  3. Questus

    Questus Senior Member

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    My statement is strong, and I stand behind it.

    Michele and I have spoken, (years ago), and we both agreed that this doctor is more interested in making money than treating CFS.

    He prescribed Famvir with only a phone consult? I think that's irresponsible.

    Btw, he gives Botox injections...How many CFS experts do that?

    Honestly though, my opinion is based on my personal experience. I saw him as a patient, and it was a disaster. Telling me that if following the food sensitivities didn't help, than NOTHING would help. I did follow the food sensitivities, and it no no impact.
    According to his testing I was sensitive to cottonseed oil, sunflower seeds, some artificial dyes....Things that are easily removed. My diet has been extremely refined for years...(no sugar, processed foods,etc...)

    He makes false promises about his ability to cure, and I found him and his staff to be unprofessional.

    Btw, he claims to have cured himself from CFS.

    He was off to speak to a local group of parents about Autism the evening after my appt. He believes he can cure Autism with the same food sensitivity testing.

    My feeling about him and his practice...Well, it rhymes with whack.

    That's an honest assessment of my experience. If someone is looking for a CFS expert, I would suggest they spend their time and money on a real one.

    I wish everyone with CFS_ME wellness.
  4. Cort

    Cort Phoenix Rising Founder

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    I appreciate your report Questus....
  5. m1she11e

    m1she11e Senior Member

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    The doc I see now is a "small doctor"doing his best. He doesnt have 15 or so domain names or advertise on FB. He barely makes it because CFS patients take up so much of his time but he cant turn his back on us.

    Look up Dr. Dantini and see how many diff domain names he has purchased. He is marketing both his book and the gripping novel. Call his number and see if you get a "patient advocate" that is just for his CFS/ME patients. My doc cant afford one of those either.

    Okay, made my point. I will stop with the negativity, I dont even like the way it feels. I just want to see people helped. I never want to see anyone in the situation I was in and it is way beyond one bad employee. Dr. Dantini confirmed that NO ONE EVER GETS SICKER ON ANTI VIRALS. No one needs to waste more of their precious money. I do however think the info you have put here for free is worth reading. I firmly believe Dr. Dantini is out to make money off of this illness. PERIOD!!

    I hope more people do give Famvir a try though. Looks like Heap even has a plan for those without insurance and with a budget!! :victory:
  6. carolinetanderson

    carolinetanderson

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    The way the U.K. treats their cfs patients is criminal. All I can figure is that they know this is a virus and because they have a government sponsored healthcare system they feel they will have to pay so much if a biomarker is found that they would rather allow their own citizens to remain sick rather than pay. I hope in our lifetime we learn why the U.K. government, and to a lessor extent the CDC, have been so hostile.

    I have been in contact with a woman who is buying her antivirals over the Internet. It's awful that we have to resort to that sort of thing. Has anyone tried any of the research institutes outside of London? London appears to be seeped in psychobabble propaganda and it doesn't appear the doctors there are very receptive.
  7. carolinetanderson

    carolinetanderson

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    Dantini

    I am sorry you had such a bad experience with Dantini. I only had the one appointment with him and it went fine. When I got really sick after starting the antivirals I called the office and the person that answered said "If it gets too bad honey, you can just quit taking them, but if you hang in there it will be worth it." It was the way that she said it that kept me hanging in there. So obviously they've changed their tune on that one. After that one appointment I was able to get the Famvir refilled by my wonderful GP who was willing to give it a shot because he saw how much better I had gotten.

    Believe me, I've seen so many doctors and had so many bad experiences I could fill a whole book with just that. So I know how different people can have different experiences with a doctor. Here's just one example, I had an MRI done in Cleveland. My Cleveland GP didn't say what was wrong, he just said call the neurology department at the Cleveland Clinic and get an appointment. I made the appointment and sent the MRI in. I got a phone call back that said you have a brain tumor, you have to go to the brain tumor specialist. WOW what a scare. So I go to the brain tumor specialist who says there is no way your symptoms are caused by this brain tumor. It's too small and not affecting you at all. Just get an MRI every six months to watch it. Another dead end to my symptoms. So I move to Washngton D.C. get an MRI done here and see the neurologist here. The neurologist here says this little brain tumor isn't an issue but boy these lesions are something. I bet they're the cause of your problems. I'm like LESIONS? what lesions? Were they on the other MRI? Yep they were. Now WTF??? I mean really! How could the brain tumor doctor not mention the lesions. I called back to the Cleveland Clinic and asked and they said they only specialize in brain tumors and they assumed a neurologist were dealing with the lesions. I said I was suppose to see a neurologist but your people told me to go to the brain tumor specialist!!!! No one told me anything about the lesions. Oh well we only handle brain tumors. I'm sure other people swear by the Cleveland Clinic, but I'm not too happy with them at all. They advertise everywhere, pander to polticians, buy up all the little hospitals and offer all kinds of things to get you to go there. I guess I feel about the Cleveland Clinic the way you feel about Dantini.

    So back to Dantini and his methods. He told me that when he was sick, he got part of the way well with antivirals and got the rest of the way there by eliminating what he was allergic to.

    I've never been one to believe in allergies as the cause of a lot of stuff so I didn't follow up with him on the allergy part. He never gave me a hard sell on it at all. However I've been on the antivirals about eight months now and I've seemed to hit a point where I'm not getting any better. I'd say I'm between 70% to 80% better, which is HUGE, but I'm not fully healthy. My flares have become more frequent too. So I sent some blood down to Dantini's lab to see if I have allergies hoping maybe it can take me farther along. He never pushed me on anything. Never told me I would never get better etc. I still haven't heard back from them about the results and it's been about three weeks so I'll have to call.

    I have tried to exercise recently as well and I have had NO success. I tried some short running and walking. No more than 15 minutes and was flat on my back for about a day. Next I walked three miles, very slowly while enjoying the Cherry Blossom Festival here in D.C. and was down for two days after that.

    Maybe I just need more time on the antivirals, or maybe I'm just not doing the GET properly (she says dripping with sarcasm) or maybe I won't be able to be fully recovered until we get to the root of what causes these viruses to go haywire. For now, I'm very, very happy with what progress I've been blessed to have and plan on staying positive and just keep plugging away.
  8. Jenny

    Jenny Senior Member

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    I've been on Valtrex for a while - got it first from one of the NHS ME clinics (on a private script), then my GP (on the NHS). Only quite a low dose though, and I doubt they will carry on prescribing it after my 5 months of treatment. The Breakspear in Hemel Hempsted also uses it.

    Jenny
  9. Jenny

    Jenny Senior Member

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    Hi Caroline

    Not sure what you mean by 'research institutes' but I've had some help from a range of doctors in London and in other parts of the UK over the years. Let me know if you want details.

    I'm still ill of course, but some things have been helpful!

    Jenny
  10. m1she11e

    m1she11e Senior Member

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    Caroline,

    This is all so bizarre I cannot believe it. I remember saying to family and friends when I was crying on the couch that I would do anything for some one in their office to say those "hang in there" words. The other ladies in the office wouldnt touch talking to me about CFS. I had to talk to the "patient advocate." You obviously know what I mean because those words DID get you through. I felt left twisting in the wind. At that time I was posting for help on the HHV6 foundation site and no one knew what to say because they didnt understand my being on Famvir for HHV6. Others even called his office for me as I was getting sicker and sicker. They got the same response. I cannot imagine Dr. Dantini treating CFS for so many years would never have anyone get sick first and then change his tune NOW. Did they just start getting sick before better? Most doctors putting people on anti virals warn them of this right up front. My doc now even tells people to back way off and work back up slow.

    Im curious when you went to see him??

    Ive been on the Famvir now for about 6 months from my GP. I did have a little lapse of time when my insurance refused to cover though. I also had a friend who has been feeling sick for many years. She went to my GP and he ran the viral tests and wanted to put her on Valcyte and she asked for Famvir as there was no way she was doing Valcyte. Maybe more of us need to do our own trial on Famvir and see what happens to these virus'.
  11. carolinetanderson

    carolinetanderson

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    Dantini

    I would have been very upset if they said that getting worse doesn't happen. I had just moved to Washington D.C. and didn't have any friends yet in town and all my family was back in Ohio. I was dealing with it all by myself and it was a horrible experience. If I hadn't had that woman in the office being so kind, I would have given up or gone to the emergency room or something.

    I wonder if that patient advocate wasn't very good and no longer works there or something like that. Dantini DIDN'T tell me I would get worse on them so I was surprised and worried when I did. I was fortunate to get the woman I did get to help me.

    Most people are suprised when they hear I'm on Famvir. One person said you must have had a high EBV level. I will tell my GP about our discussion on Famvir and see what he thinks.
  12. Cort

    Cort Phoenix Rising Founder

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    I really want to hear more about Famvir - I swear this is the first time I've even heard of this drug....
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cort you need to read more of my threads, lol.
    I dont know why its not more popular, maybe because its abit more expensive then valtrex and my understanding of insurance companies in the USA is they dont want or wouldnt want to pay out for something alittle more expensive when valtrex is a cheaper alternative, for shingle, herpees 1 and 2.
    Cort, with your powers of investigation and contacts can you find out why Maija Haavisto the author of the reviving the broken Marionette has written in her book about famvir having anti-retro-properties, i have been unable to find any info on this. I often wonder if this maybe another hidden featutre of this drug.

    cheers!!!
  14. m1she11e

    m1she11e Senior Member

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    No, its my threads you need to read Cort...:D LOL!!!

    I did start a thread months ago and mentioned Dantini and how he was the only doc who said Famvir did work for HHV6. I tried it and didnt hold much hope for its affect on HHV6. Its bringing down the viral load so far... and its isnt crazy toxic like Valcyte.

    I know of two other people starting Famvir from my regular doc now. Its strange though. I sent two people to him as a last resort because they had a lot of odd symptoms. Neither of them was anywhere near as sick as I am. They both came back with high HHV6 and one had rocket high EBV. My doc loves Valcyte and wanted to put them on it but they were ready to ask for Famvir if he went down that road. SOOOO, we will see what happens to my HHV6 and their virus' as well. Some one else on the board just started Famvir too. Looks like we will have to do our own little trial here...:rolleyes:
  15. Cort

    Cort Phoenix Rising Founder

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    So much information I missed :) :cool:

    Definitely lets hear more about how its going with Famvir on the PR Boards....:thumbsup:

    I wonder if Peterson ever uses it?

    That retroviral connection is interesting - unfortunately she doesn't cite where she got it from.
  16. grant107

    grant107 Jean

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    I live in the same community as Dr. Dantini. I did not go to him because I attended a lecture by him about 15 yrs ago and he said he could "cure" CFS with acyclovir. I had already taken that drug and was not cured and considered him a quack. Recently, I talked to someone who called and was told he required $3000 worth of tests to get the drugs from him. I can go to another doctor and get a prescrition for Valtrex without spending $3000. I have been on Valtrex for almost a year and am improved.
  17. Cort

    Cort Phoenix Rising Founder

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    There's still so much to learn....one thing the medical community doesn't get is how happy we, like any group, are to make progress. Forget exercise, I would love to just feel healthy more - not in pain, not tired, etc... . This was shown in the PACE trials of all things....the majority of the partcipants felt 'satisfied' with them - perhaps because they didn't expect much (?) but also because despite the small amount of progress they made - any progress is welcome.
  18. Cort

    Cort Phoenix Rising Founder

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    Well we are a diverse community aren't we? (He does use Valtrex). What works for one person won't necessarily work for another...Famvir obviously worked quite well for Caroline.

    I can't imagine why or how anyone could spend 3,000 on tests with Dantini though..His book is quite simple really; he talks about viruses and food allergies...are viral tests really that expensive?
  19. m1she11e

    m1she11e Senior Member

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    I was able to send Dantini my recent labs so he didnt require anything for testing. His phone consult was around 150.00 for 15 minutes. That part of it I have no complaints about. He did tell me that Famvir would cover all HHV6, CMV, and EBV. He even said it would cover Parvo although at the time I had not been tested for that. It IS one he tests for though. He wanted me to take the Food Allergy test. That test is around 1,000.00. I never took it but would have liked to.

    As far as anti virals.... He told me his first choice was Famvir. If insurance wont approve he goes to Valtrex and then last choice is acyclovir. He also puts patients on something to potentiate acyclovir if that is the only option. He also told me he prefers not to use Valcyte but some patients have pushed for it. He felt it was too toxic and not needed.

    Of course that was two years-ish ago and he may have changed some of his tune...
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    To potentiate antivirals he may mean probenecid which increases blood levels and half lifes of some drugs, mainly antivirals and antibiotics.

    cheers!!!

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