Going to try Dr. Dantini's protocol-Has anyone else tried it?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by mujuer, May 5, 2009.

  1. mujuer

    mujuer New Member

    I am five years into this fibro dd and have tried everything and i do mean everything to no avail. i was googling one day and this doc's name popped up. i checked out his website and his fibro started exactly like mine. i read his whole website and it just started to ring true to me. i bought his book and with having researched on my own for the past five years extensively, i found something that might hold some hope for me.

    i am not new to these boards but haven't posted in a long time. i am not trying to sell his book, his protocol or anything else. i was just trying to see if anyone else knew who he was or had ever been treated by him. i have my first consultation with him tomorrow. p
  2. ladybugmandy

    ladybugmandy Member

    i think dr. dantini prescribes valtrex instead of valcyte. if the valtrex alone does not help, i would consider adding valcyte to your regimen, possibly under another doctor.

    best of luck and please keep us posted!

    sue:)
  3. Nanie46

    Nanie46 Moderator

    Hi,

    I did his protocol 2 yrs ago. I wish I had known at the time that my problems were not really viral.

    I was helped by the food testing and food elimination. I had less pain, stiffness etc avoiding sugar and corn syrup. I found out which foods caused digestive issues for me.

    Although I had some high viral titers and took Famvir for 6 months (spent $5400 on it!), I don't believe I was helped by the antiviral.

    Some people are. I did not herx on it.

    Later I took acyclovir for 3 months and did not improve on that either.

    Dr Dantini was very nice and so was his nurse.

    2 yrs later, I found out through my own research that I have a chronic bacterial infection....borrelia burgdorferi (lyme).

    It also explains why I had developed food sensitivities. Plus the lyme bacteria thrives on sugars.

    Many people who were diagnosed with CFS or FMS later found out they have a chronic borrelia infection.

    There is a good symptom list in the back of this booklet....if you have numerous symptoms, you should consider lyme.....


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


    If I can help you in any way, you can leave a post for me on the lyme board.
  4. mujuer

    mujuer New Member

    Hi Jamin' and others,

    No we haven't moved yet. Still stuck up here in WA state. Our house has been on the market since Dec. and we haven't even had one person look yet!!!!!!! Still trying though.

    When I first came down with fibro, I went to the dr. and asked her if it could be lyme and she said "no, our deer don't carry it in this area". So I never got tested. Dr. Dantini is calling me at noon and I plan on asking him to test for it anyway.

    Nanie46, do you have his new book as I don't see any symptoms in the back of this one? This one is copyrighted in 2008 and has a green and yellow cover.
  5. Nanie46

    Nanie46 Moderator

    Hi,

    The fact that your Dr made a comment about the deer ticks in your area not transmitting lyme shows just how ignorant she is. Lyme is everywhere...just more prevalent in some areas.

    Actually, the symptom list I was refrerring to is in the booklet in the link in my post above.

    Here is the problem with asking Dr Dantini for a lyme test:

    A lyme ELISA misses at least 75% of lyme cases.

    A western blot for lyme done by labs other than Igenex in CA will miss most cases of lyme also. These other labs do not test for all bands and the sensitivity of their tests is not adequate.

    Igenex tests for 14 IgG and 14 IgM bands. Other labs only test for 10 IgG bands and 3 IgM bands...which is absolutely totally inadequate!!!!!!!!!!!!

    The problem is that 99% of Dr's do not know this, and they depend on them to rule out lyme.

    The truth is the lyme is NEVER, NEVER ruled out with just a negative lab test....but Dr's do it all the time....which leaves thousands of people with undiagnosed chronic lyme.

    Please take my word on this. I have been researching for months and now I am treating for lyme and starting to see subtle improvement....it takes a long time to recover from a chronic infection like this.

    Dr Dantini actually ordered my western blot through Igenex for me, but only because that is what I insisted on.

    It was the best $200 I ever spent. Go to www.igenex.com Call them for a free test kit with a prepaid fedex mailer.

    Have Dr Dantini order the western blot IgG and IgM, test #188 and #189 are on the back of the Dr's order form.

    The Dr's order form comes with the test kit. You can fax it to him for his signature and Dr info.

    Must be prepaid with a credit card or check, although Igenex accepts medicare.

    They will send you a receipt that you can send in to your insurance.

    Then you must get a copy of your results right away and compare the band results to the info on page 7 of the following paper by a lyme expert...

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


    and also compare the band results to the info in Dr C's western blot explanation in this link...


    http://www.drcharlescrist.com/testing.htm


    It is common for the results to say "CDC negative" or "Igenex negative", yet a person can still have lyme.....those are just reporting criteria, not diagnostic criteria.

    The most important thing is each band result, and whether some of those are species specific to lyme.

    Remember though that a person can have no species specific bands, but still have lyme. A really sick person may no longer be making antibodies that would normally show up.

    Lyme is really a clinical diagnosis, based on history and symptoms....it is not based on a lab test.

    It takes a real lyme literate MD to diagnose and treat lyme and common coinfections properly.

    I had a western blot through Labcorp in Dec 2008 and it only showed band 41.

    One month later I had a western blot through Igenex and it showed:

    IgM band 18 +, 39 IND, 41 IND, 58 +, 83-93 +

    IgG band 30 +, 31 IND, 41 ++, 45 +, 58 +

    Believe it or not, with both tests, Dr's told me the results were negative....because it said CDC negative and Igenex negative.

    Thank goodness I had done the research and I knew better....I found a LLMD who confirmed my suspicions.

    Please let me know if I can help you any further.
    [This Message was Edited on 05/06/2009]
  6. mujuer

    mujuer New Member

    I will print this post out for the f.y.i. I have been on this board for several years and have heard this before, that the Igenex test was the only one to use.

    Yes, my nurse practitioner made that comment several years ago as I don't think she is up on alot of different things but she is close and she is the only one in my area that will even think about treating pain. She will however let me keep researching and she will usually go with what I think I need. She is going to sign off on whatever Dr. Dantini wants. He is going to test for lyme, and the stealth viruses. He also believes that my thyroid medication is way too low. He is also putting me on 15 mg.s of melatonin. I know others have researched melatonin and think that alot lower doses work. In the summertime when I am feeling the most normal, I can take melatonin and go to sleep but the rest of the year, I can't. He also thinks my sweats are due to the viruses. I have great health insurance and have looked into testing sites and they are pretty good at covering outside of area so i will try to have the lyme tested at Igenex.

    Will keep you all updated. p
  7. Nanie46

    Nanie46 Moderator

    Hi,

    I was on oral melatonin when I did the antivirals, but it really did not help me.

    Now I'm taking sublingual melatonin and it does help me.

    My LLMD said that oral melatonin goes mainly to the gut and sublingual melatonin goes to the brain.

    Sweats can also be due to common lyme coinfections like babesia.

    I wonder if you feel more normal in the summertime because you are getting sun and therefore would have a much higher Vit D level.

    I am taking 10,000 IU Vit D daily at noon.

    Take a look at this lyme expert's paper.....near the back, on page 22 he talks about coinfections and their symptoms are summarized starting on page 26......

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

    znewby Member

    Am I correct in assuming that the sweats you refer to in relation to lyme are in the day time and night time and not just night sweats?
    I know night sweats are associated with cfs. Thanks.
  9. m1she11e

    m1she11e New Member

    I started with Dr. Dantini about 2 months ago. At the time I had a very elevated HHV6 titer. I did have a negative IGENEX text about a year earlier but that doctor said I still had one positive band that he considered positive for Lymes. I did about 3 oral antibiotics for about 6 months with no Herx and no no improvement. That is when I was tested for all the virus'.
    My original doctor started me on Valcyte but I could not tolerate it at all. That is when I found Dr. Dantini. I was relieved that he felt that Famvir and Valtrex could deal with HHV6 and didnt feel the need to use Valcyte. Despite everything I read, I decided I would rather try Famvir since it is so much less toxic.

    So, that is when Dr. Dantini put me on Famvir. He is not covered by my insurance so all I could afford was a 15 minute phone consult. I planned to also find a doctor who was covered by insurance to order the food allergy test. Unfortunatley, I got sick by week 2 on Famvir. I got REALLY sick. I experience slight pain, weakness and numbness on the right side of my body off and on and have for 12 years. It came on with a vengance though by week 3 on Famvir.

    I gave up on Dr. Dantini because his very nice "patient advocate" really insisted that people dont get sicker before they get better on the anti virals that Dr. Dantini uses. I told her that most people get worse first on any anti viral. She absolutely disagreed with me and said it must have been something I ate. Here I am bedridden sick, no change to my already squeaky clean diet, and she insists that NO ONE they deal with gets sicker first on the anti virals they use. At that point, I could not afford to pay to see Dr. Dantini and I was so confused with his stand on anti virals. It didnt make sense. People who get better almost always get sicker first. It is supposed to be a good thing. With no support from them, I got off the Famvir. I have been off it for 3 weeks and the crushing fatigue has gone back to before I started but I still have the neuro symptoms. I am still unable to figure out how the Famvir brought such a strong flare on. I did read that anti virals initiate a Cytokine storm, so maybe that is what the trigger was?

    I have found some one new now and her knowledge has blown my mind. She stopped treating in her practice with anti virals all together as she felt bad giving them to people when they "just didnt work." She treats the virus' but not with anti viral drugs. She said she rarely saw any improvement in people but it was all she had at the time.

    Good luck with Dr. Dantini. Are you in Palm Coast or dealing with him by phone?

    Michelle
  10. mujuer

    mujuer New Member

    Wow Michelle, that is wild that the patient advocate said that when he states that clearly in his book that some people will feel worst before they start feeling better. It even took him 6 months to feel better so I am confused why she would have said that. I don't have a patient advocate, I just talk to him. I am working with him over the phone. I'm sorry that it didn't work for you. It is so hard to weather thru all of the different protocols just in hopes to get something that works and when you have several things going together at one time, it's overwhelming. My sister has lupus and fibro and we can really comiserate together.

    Someone asked about the sweats. I have them day and night. Mostly they start in the late afternoon and go thru the night. I thought it was just a hot flash since I am in menopause but I was told that hot flashes don't produce sweat and that the sweating is a sign of an active virus. I am suppose to start taking my temperature when I start to sweat and if is viral then my temp will drop. I will try that today. Most of my pain right now is my ribs. They are on fire and I feel like when I breath, I am going to breath out fire.

    I have been on Vit. D for a long time and I just had a panel worked up and I am finally in the good range. I am in the sub-group of fibro sufferers who only flare when the barometric pressure rises and falls. Like Jamin asked me if we moved yet, we are trying to get out of the Pac Northwest because the weather changes up here are crazy insane. We are trying to get down to California. Thanks everyone for all of the input. p
  11. m1she11e

    m1she11e New Member

    I did not read Dr. Dantini's book. I was at such a low point, feeling awful! I had read over and over in all of my research that getting worse first is a good thing. When I talked to his "advocate" (I am not sure what she is. She is the person you get when you call the number on his website.) about feeling really sick on the Famvir, I expected her to say "hang in there, it is a good sign." She was so taken back that I thought it was due to the Famvir. She said in the 20 years Dr. Dantini has been treating people no one has ever gotten sick from the anti viral. It really was not what I wanted to hear at the time. Now, how could she not know anything, yet it is in his book? Maybe I should have payed to talk to him??

    Very confusing!!! Keep us posted!
  12. Nanie46

    Nanie46 Moderator

    Hi,
    Sweats are not usually associated with lyme, but are associated with another common infection that the same ticks carry.....babesiosis....a protozoan.

    Dr B says in his paper in the link below that Obvious sweats are usually noted, usually at night, but day sweats may occur too.....see page 26...


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

    The symptom list is on page 9-11....sore ribs are on the list.


    He also mentions that Bartonella can produce mild sweats.

    I tested postive for Lyme because I have species specific bands (even though test officially said CDC neg and Igenex neg), bartonella and Rocky Mt spotted fever.

    I have learned so much about lyme and coinfections in the last 6 months...some very important and little known info is:

    Many people who were initially diagnosed with CFS, FMS, Lupus, RA, MS, ALS, Alzheimers, ADHD, other psychiatric disorders such as depression and bipolar disorder, etc actually have undiagnosed lyme disease and associated coinfections.

    Only about 10% of cases of lyme are actually diagnosed and reported.

    Treatment for chronic lyme disease involves many months and often years of combination antibiotic treatment....with different combinations used for several months at a time, plus lots of supplements such as high doses of fish oil and probiotics etc, intensive exercise (lyme bacteria hates increased body temp and most people with lyme have low body temp), diet that includes no gluten, no sugar, no processed foods, low fat.

    People with lyme who have not improved could have an undiagnosed coinfection (very common), hormone issues that were not addressed, diet issues, too little exercise, not long enough combination antibiotic therapy, etc.

    Different antibiotics attack the bacteria in different ways, intracellularly, prevents bacteria from making protein, or prevents bacteria from dividing.

    Antimalarial drugs are used also. The lyme bacteria is the most complex bacteria identified to date.

    It can change into other forms such as cyst form, cell wall deficient, biofilms, etc which can be unaffected by antibiotics.

    It is very complex which is why it takes a highly skilled LLMD to sort it all out and treat all the infections properly for a long time.

    Remember that all the conditions mentioned above have "no known cause"...well everything has a cause including CFS and FMS....Dr's just don't want to look for it.

    On lymenet.org's Medical Questions board there are many, many people who were initially diagnosed with one or more of those diagnoses, and later found they had a chronic borrelia burgdorferi infection (lyme) and associated coinfections.


    [This Message was Edited on 05/07/2009]
    [This Message was Edited on 05/07/2009]
  13. mujuer

    mujuer New Member

    That is a great articule. Have you read the book about Plum Island being the place where lyme got out of their labs? It is pretty interesting. I am not ruling anything out and just want to get tested for everything. P
  14. ladybugmandy

    ladybugmandy Member

    michelle...if your problem is viral and you have been sick for many years, you will need antivirals for a long time to see improvement. with me, i felt a real sustained improvement after a year to a year and a half on the drugs.

    not all people get sicker before they get better but the vast majority do.

    i guess all this antiviral talk is moot since ampilgen will likely be approved and you can take that!

    best of luck
    sue
  15. m1she11e

    m1she11e New Member

    Sue,

    I have watched and cheered for your quest with anti virals. I know you have certainly had your ups and downs and really stuck with it. Good for you! I could have stuck with it but I was really scared over those darn neurological symptoms!!

    Do you really think Ampligen offers hope? I have heard such mixed reviews.

    Michelle
  16. questus9

    questus9 New Member

    I met with Dr Dantini in person, and he himself said people do NOT get sicker before they feel better on antivirals. Neither he nor his nurse had any interest in Dr. Montoya's work, and no interest in discussing Montoya's patients claims of getting sicker before getting better.

    Dr. Dantini told me, "If you don't get better with the food changes", (several thousand dollars spent on food sensitivity tests) then you will never get better. The food issues are not my problem. My diet is extremely limited..(no sugars, no refined foods, no fried foods, etc...) The list if foods he found that I'm sensitive to are not in my diet.

    I don't think he is qualified to treat CFS, and I don't mean this disrespectfully. He is not devoted to keeping up with research being done elsewhere, and also believes food sensitivities are the cause of most auto immune illnesses. He told me this, and I find that absurd.

    I do believe food is a huge factor in immune health, but it is a co factor.

    I simply don't recommend this doctor.




  17. m1she11e

    m1she11e New Member

    Well, there you have it...

    Thanks questus. I looked at your profile and I am from Orlando as well. I just moved to Palm Coast (not to be near Dantini, just a coincidence) Is there anyone in Orlando that your see? I was seeing Dr. Hudson in WP and he was very nice. He wanted me on Valcyte but it scared me.
    I have also seen Dr. Kalidas but he is soooo expensive and does not take insurance.

    Is there anyone you are currently seeing that you like in the area?

    Thanks,
    Michelle
  18. znewby

    znewby Member

    My daughter did the expensive food tests and took valtrex for 4 months with no improvement. It seemed that they didn't check back to see how people were. How do they keep stats if they don't check back. Did other people find this? They talk so confident like you will be cured no question.
    [This Message was Edited on 05/09/2009]
  19. xchocoholic

    xchocoholic New Member

    Actually, Dr. Dantini is reflecting what I've been reading and what my integrative doctor told too. The bulk and the most important parts of our immune systems are in our guts and the only way to fix our guts is to stop eating foods and chemicals that damage them. That way they can heal. If you keep picking at a scab it's not going to heal ... same goes for the digestive tract.

    I was told and I've read that our bodies will take care of these viruses, including Lyme, once our guts are healed. And our bodies can't possibly completely irradicate these viruses if our immune systems are still broken. This is why most LLMDs are telling their patients to eliminate gluten, etc. IMHO, Some people get lucky and treating the viruses is enough to jump start their immune systems but anyone with a serious case of CFS/FM isn't going to be that lucky.

    All this takes time ... I've been at this for almost 4 years now ... I'm fairly certain healing the gut doesn't have to take this long though. I wasted a lot of time playing around with those GF goodies, etc when I should've been on a strict candida diet.

    Just my 2 cents ... Marcia

  20. m1she11e

    m1she11e New Member

    I am very much interested in the leaky gut issues as well. I am all about restoring my immune system, including the high percentage of it that resides in the gut. That has always been my personal theory on any of us really standing a chance to get well and stay well. I have eaten a very clean diet though for YEARS and avoided gluten and dairy. I understand you can be allergic to something good for you as well. It is just confusing how to go about healing the gut. Dr. Dantini recommends the Sage allergy test, which looks like a good one, but is not covered by most insurance and is 1,800.00. At this point, like most, I a have put all I have into this mysterious illness. Not saying I am going to give up on the gut issues, just wont be running out to take a bunch of tests any time in the real near future.

    I dont remember who mentioned not being scared and staying on the Famvir. I am having EXTREME nuero symptoms. I know I have mentioned it before but it is getting very bad. I have had them off and on for years, starting with a really bad flare while having Mercury removed and taking MGN3 (immune stimulant). That first first flare was 12 years ago and I lost alot of feeling and strength in my right leg, arm and the side of my face. I also broke out in a horrid head to toe rash. All of these things lasted for about 5 months. It was awful. I had no money or insurance but saved for an MRI. It was negative. I just ate healthy and rested and even worked. I would go in the bathroom and throw up in between clients because I was so tired and had bad vertigo as well. (and I was doing facials in a spa...if the clients only knew how sick I was. Some did.) I was a wreck but pulled out of it.

    All these years since the bad flare I have days where my right leg gets a little numb and weak here and there but never for more than one or two days. My face is the same way. My right eye however always has swelling I can feel and is difficult to move. It was 3 weeks into Famvir that I had the flare like 12 years ago and has gotten increasingly worse even off of the Famvir. Maybe the Famvir brought it on? Maybe a coincidence. There is no way of knowing. I can only speculate to the point of insanity. My body could have been attacking the virus and it was good, I may have Lymes that activated, I have read that the body protects you from Mercury with virus' and other pathogens and when you kill them off any remaining Mercury is unleashed, I was told that Lymes love Mercury so maybe those little buggers are running around playing in the Mercury?? God only knows.

    Sorry, I have hijacked this thread. I wish there was a doctor, and it is not Dantini (trying to bring it around to the original subject here..) that was nearby and took insurance that knew about all of these things. It always seems like with all my research, I know way more than the doctors or they only know about parts of this illness. Some are into virus', some Lymes crazed, some Candida etc. Few pull it all together and if they do, they stop taking insurance and charge hundreds for an office visit.

    I have the Gupta program, I just cant seem to use it. It is alot of work and I am already so darned exhausted!! I am beginning to think though, that it (and other things like it) might be as important or the most important of everything we do. Maybe not the cure, but a large part of it. (Please dont attack me for bringing that up...)

    Sorry so long, been up all night wondering if I will be able to walk today (still can!) and what in the heck is going on in this body of mine.

    Michelle