to Pepper Re: Petrovic protocol

Discussion in 'Fibromyalgia Main Forum' started by RainbowBear, Mar 25, 2004.

  1. RainbowBear

    RainbowBear New Member

    Hi Pepper: I am considering doing the Petorvic protocol, which made you very ill. Questions: 1. Were you taking anyother medications and/or supplements at the same time? 2. Do you havew any idea what the problem was? 3. When you ran into difficulties, how was it handled? 4. How are you now? Thanks. RainbowBear
  2. pepper

    pepper New Member

    I dug through my health file and found my Petrovic records so I will answer your questions as best I can from my notes. It was Oct/98 that I started it so I cannot remember too much!

    I was following the protocol with the help of my CFIDS doctor here. My doctor communicated with Dr. Petrovic regularly by email and I was able to talk to my own doctor about any problems I had and he talked to Dr. Petrovic.

    1. On their recommendations, I continued with my sleeping medications, low dosage Serzone (antidepressant) and B.P. medication (Apo-triazide).

    2. When the package of supplements arrived, I opened it up and was immediately nauseous. It was full of B vitamins I am sure because I am very sensitive to them and could smell them constantly no matter how well I wrapped them up and tucked them away.

    Despite feeling so nauseous I took all the supplements for a couple of weeks.

    Then I developed an all-over body itch. Both my doctor and Dr. Petrovic thought that it must be from die-off and suggested I try and stick with it if I could.

    I lasted a couple of more days and couldn't stand the nausea and the itch. My own doctor told me to take a break from it which I did.

    Every time I tried to go back and start it again, the nausea and the itch would start all over again, so I gave up.

    I was obviously sensitive to something in the supplements but Dr. Petrovic insisted that was not possible.

    3. Dr. Petrovic responded very quickly to my emails and those from my doctor. However, he did not seem to understand how ill I was. My own doctor thought that perhaps he was not used to working with people who were as sick as I am or who lived in such polluted areas or did not have access to as pure a diet as might be available in South Africa.

    4. Unfortunately I am as sick now as I was in '98. I wish I could say it were different.

    I am on the low dosage antibiotics and am hoping for improvement over the long term. Here's hoping!

    I hope this was helpful.
    Pepper


    [This Message was Edited on 03/29/2004]
  3. pepper

    pepper New Member

    for RainbowBear
  4. pepper

    pepper New Member

    Bumping for you.

    Pepper
  5. pepper

    pepper New Member

    for RainbowBear.
  6. torilion

    torilion New Member

    Please do a search on this site for 'petrovic" and I am sure you'll find alot of info.

    Anyway I stopped now, I don't know if I'll continue later. I'll decide soon. I followed it for 10 months and was not at all cured, however I must honestly say dr. P hads helped me with many things and it is good to be in regular contact with a cfs specialist. He did for 80% cure my GI-symptoms. Also I must say that since stopping his treatment I got very much worse.

    About the nausea, I had this too, but a few weeks is far too short for this treatment. The nausea will go away after the first month for most patients. I do believe dr. P. treats very severely ill CFIDS patients (incl me), so he does know what he talks about. However his claimed over 90% recovery rate I have my doubts about. I should have been the "ideal patient"for his protocol, as I had no secondairy illnesses, am a young man, did not take any other medication, was part of the postviral subgroup and had relatively little psychological symptoms.

    If you like to know more please let me know...

    regards,
    ROland
  7. torilion

    torilion New Member

    rainbowbear did you read our replies??
  8. RainbowBear

    RainbowBear New Member

    Hi Pepper--

    Thanks so much for your response to my questions about the Petrovic protocol. I am sorry that it did not work for you. I'm a former patient of Dr. Paul Cheney, who left his CFS practice because he had a heart transplant laast fall. However, I just found out yesterday, that he will be resuming it due to his splendid recovery.

    In the meantime, I have been investigating other CFS protocols, among them Dr. Petrovic's. My mother has a friend in Sun City West who has been on it for about 11 months, and is improving gradually, which is hopeful. I am also considering the Teitelbaum protocol, as well as the insulin potentiation therapy develped by Dr. Dale Guyer.

    I started on sustained release T3 last fall for hypothyroidism and cortef for adrenal failure this spring. These two medications have been helpful. Also, homeopathy, epidermal screening, body work, chiropractic, psychotherapy, prayer, and journaling are part of my healing program.

    Hang in there. Thanks for your help. Know that you are in my prayers.

    Rainbowbear
  9. RainbowBear

    RainbowBear New Member

    Hi Torilion--

    Thanks for your response to my questions about the Petrovic protocol. I am new to the message board, and am just learning how to play.

    What were your GI symptoms? Were you taking any other supplements and/or medications at the same time you were doing the Petrovic protocol? Did you have any other side effects besides nausea from the Petrovic protocol? Did you have any other improvements and/or change in your condition from this program? Given the Petrovic protocol was helping your GI symptoms, why did you stop?

    I, too, have been on the imunovir, per Dr. Paul Cheney for almost 2 years. His dosing was 3000 mg MWF, 2000mg on Tuesday and Thursday, none on Saturday and Sunday. I have not noticed any big difference, either positive or negative, with this medication. I have been diagnosed as having mycoplasma fermentans, and still have it, despite this treatment.

    Thanks for your help. In Healing, RainbowBear

     
  10. torilion

    torilion New Member

    hi-
    the first 7 months i was on it i took no other medication, later i was on imunovir and NAC as well.
    I can say now after stopping it earlier for about 2 months and then restarting it again, that it does seem to help me pretty much. However we found out I responded not so good to follow-up, which is lower dose (50pills a day), but I had very encouraging results on high dose. So now I'll start ultra high potency (120 a day) soon, which should do very much hopefully!
    I stopped earlier because I was and am looking for a cure, not only some sympton relief. I now believe again this high potency treatment may cure me..
    also, I can say I had besides some nausea and GI-symptoms (esp in the beginning) zero side effects. I did have some herxing probably. It also improved my hypoglycemia a lot; which I can objectively measure.
    bye
    roland
  11. pepper

    pepper New Member

    I did not stop the protocol only because of the nausea. That was bad enough, trying to swallow all those pills when I thought the gel caps would come right back up.

    However, it was the ITCH that made me stop. I was itchy, itchy, itchy from the inside out. Everything itched including my eyeballs. I thought I was going to go insane with the itch!

    This has happened to me before when I have had bad drug reactions or a severe allergy to something I ate.

    My CFS doctor's opinion was that I was reacting to something in the supplements and, since Dr. Petrovic wouldn't tell us what was in them, it was impossible to start trying to figure out what it was.

    I stopped it on my CFS doc's advice because I was going insane with the itch.

    Pepper
  12. dannybex

    dannybex Member

    ...and I totally understand the frusterations of itching problems (my scalp and ears get really itchy) but I've always read that increased itching MAY be a sign of candida die-off, and also kidney stress. The body is trying to rid itself of toxins, and it's only route is through the skin...

    I've heard good and not so good things about Petrovic. At least he's now stopped claiming that he can cure people in 3-5 months. He does admit now that those who are working or under some stress (hello!) will take twice as long.

    I guess that reinforces the constant reminder that stress plays a key role in this illness, and that no supplement will really give substantial improvement, unless we conciously work to reduce stress (through prayer or meditation or deep breathing, etc.) as much as we can. Again, easier said than done, but very important.

    Just my two cents.
  13. pepper

    pepper New Member

    What you are saying is not at all stupid. What I was having could very well have been a die-off of some kind - although that is not what Dr. Petrovic thought at the time. It also could have been an allergic reaction - or liver overload. There was no way of knowing.

    However, an incessant itch from head to toe, inside and out, that does not allow you to sleep or put on clothes is unbearable. I find these rare itching episodes far worse than any pain I have had, believe it or not.

    It was totally unbearable. I could not cope with it and the inability to sleep at all that went with it.

    I don't know if anyone who has not had this type of itch could understand what it is like. I have had it a couple of times since and thought I would go insane if it didn't ease up.

    I really wanted to do the Petrovic protocol because I thought that it just might be the answer and I had invested a fair amount of money in it. I did not want to quit but was forced to partly because of the nausea, but mainly because of the incredible incessant itch.

    Pepper
    [This Message was Edited on 05/05/2004]
  14. torilion

    torilion New Member

    you said you heard good an not so good stories about dr. P.
    Where did you read/ hear these? How do you know he 'admits...'? PLease share any additional info you may have...Would be very much appreciated.
    regards,
    Roland
  15. elliespad

    elliespad Member

    Because we have a renewed interest in Dr. Petrovic's treatment protocol. Anyone have any comments to add?
  16. Dolphin_lover

    Dolphin_lover New Member

    for more info from more readers!!!!