Petrovic protocol

Discussion in 'Fibromyalgia Main Forum' started by torilion, Oct 27, 2004.

  1. torilion

    torilion New Member

    hi all...
    I asked this a long time ago and figured since there are many new people on the board now to ask again.....
    Is anyone on the Petrovic Protocol? I tried this for some time and am now thinking whether to continue on it or not. So far I have on avg about 20% less symptoms while on it, but it is not nice to take and expensive. I am wondering about other people's experiences with this. Also if you know someone who tried I am interested to hear.
    Thanks and take care!
    Roland
  2. Shirl

    Shirl New Member

    Shalom, Shirl
  3. torilion

    torilion New Member

    no one??
  4. torilion

    torilion New Member

    :(((
    2 bad this treatment deserves more participants, please let me know
  5. jf26551

    jf26551 New Member

    In regards to the Petrovic Protocol... I felt it would be appropriate to jump in and share some information.

    My understanding of this medical treatment is that it was based on early reports (1990's), Wallach's reports of successful modulation of the immune system in humans, and Baxter's ? Theory of Synergy.

    One might hypothesize that CFS is caused by ROS production that supercedes the anti-oxidant buffer's ability to neutralize ROS, resulting in an accumulation of ROS within the cells. According to Pall, at WSU, ROS accumulation in the cells, particularly peroxynitrite, eats away at two of the mitochondrial enzymyes,resulting in a decreased oxidative metabolism of lipis and resulting ATP producting, explaining 'fatigue' in CFS. Likewise interactions between ROS and cytokines might result in a 'up-regulation' of the cell mediated immunity as ROS levels in the cells increase. It appears that the detox mechanism also backs up once ROS levels rise in the cells, as this too may be an oxidative function.

    So then, my understanding of this treatment approach is that it lowers the levels of ROS in the cells, and attempt to stabilize the cell mediated immunity, which was hypothesized to be the largest remaining producer of ROS.

    I am not sure about this, but I believe this treatment is covered by all the South Africa health care providers, and CFS? like conditions are regarded as reversible in that country. One might consider that this is worthy of futher investigation, as medical research seems to concur with this treatment approach. The reported success is 98%, and my contacts who have been on this treatment have all fully recovered. I have only experienced beneficial effects fom the treatment myself.

    But then, one may wonder, no matter what treatment you take, is it possible to recover unless you under-do your energy limitations? If CFS is exertional, and exertion beyond a certain point makes it worse, than if one were to over-do their energy limitations, I would imagine that it would be more difficult to improve when one's symaltanious over-activity warranted a physical decline.

    I find it interesting how many physicians are advocating for pharmacological intervention in CFS. It appers many of these drugs are metabolized (oxidized) by the P450 cytochrome substrate, which would result in a further production of ROS (free radicals) within the cells.

    Please note, that none of this information is intended as medical advice, and should not be interprited in this way. Only a licensed physician can provide medical advice, and participate in the diagnostic, treatment, and intervention process.
  6. pepper

    pepper New Member

    Some experience here. My CFS doctor was advocating this treatment several years ago as he had some success with it. Two men (patients of my doc) who did the entire protocol got their lives back. I have not asked him for an update so I do not know if this continued.

    Another one of his patients, a woman and a friend of a friend, became much much better after using the protocol. She said that she never felt "well" but felt like an ill person having a really good day most of the time.

    Her remission lasted for a year or two and then two or three years ago she took a nose dive and is worse than she ever was.

    I decided to try the protocol while my doctor was promoting it. My doctor was trying to work with Dr. Petrovic and perhaps set up a clinic on this side of the Atlantic. However, that didn't work out.

    I filled out many forms and talked to Dr. P. by email several times a week. One thing that I made clear was my sensitivity to B vitamins. I cannot stand the smell of them (not all B's, just the B complex - there is one in there that smells very bad to me and makes me nauseous.)

    I decided to buy a trial pack which was $500 U.S. I think, maybe cheaper, I cannot remember. The package of unlabelled supplements arrived and when I opened them the smell of the B vitamins nearly knocked me out.

    Just as an aside, when I mentioned this here before, another member suggested I was out of my mind taking stuff when I didn't even know what it was. Looking back, I think she is right!

    Anyhow, I took these pills for almost the entire trial period and followed his diet and program exactly. I was so sick all the time that I had to stop. When I told him that the B's were causing the nausea he disagreed with me and told me to stick with it.

    I would have appreciated it if he would have recognized my concerns and addressed them in some way. It seems to me that the program is not nearly as individualized as he tries to lead us to believe. If it was, he would have eliminated what was making me sick.

    Just my two cents worth.
    Pepper
    [This Message was Edited on 12/18/2004]
  7. jf26551

    jf26551 New Member

    Pepper,

    I hear your frustration... but have to state that your experiences can/should not be used, in my opinion, to judge the success of an innovative medical treatment.

    Yes, this treatment approach contains B vitamins. If you can not tolerate B vitamins, then you can not take it. This is highly unfortunate, but if you are unable, for whatever reason, to take this treatment, then it is not statistically accurate to use your information. Perhaps if you did not have a sensitivity to B vitamins, you could have followed the laid down procedure, and would have recovered fully.

    Here's a second scenario... An individual can only afford 1 month of treatment, they take that one month, and are not better. They then state that this approach is not successful. Again, this conclusion must be discarded, since they did not comply with the laid down procedure.

    But then, doesn't this kind of thing happen with other medical treatments as well. Suppose a person developed an infection, but was allergic to the antibiotic. What would they do then? So from a scientific standpoint, the anti-biotic is still effective, but from a practical standpoint, it wouldn't 'work.'

    Nash Petrovic explained the point highlighted above very well. If a person discontinues treatment when they are feeling very much better, but are not FULLY recovered, then they will relapse as soon as they over-do their energy expendiatures. This conclusion was reached after a RSA study, where patients recovered very quickly. Once they felt very much better, they assumed this was a 'full reversal' and relapsed once they over-do it. Hence TA kilroe smiths's comments, the treatment must be 'slavishly' continued for some time, even after apparent full recovery, in order to lose this effect.

    None the less, the results you reported are highly significant, as no other medicinal treatment known? has fully reversed even 1 case of CFS.

    It appears the only other reported success of reversal of CFS was again, through anti-oxidant therapy. I believe there was a Dr. Ray Stand, having success through nutritional medicine. Also, Dr. Ali had published several trials having success with cellular nutrion for both CFS and FMS. Again, these are not targeted at symptomatic relief, but restoring more normal functionality of the body through nutrition.

    There was an interesteing article written called "Reversing the Syndrome" about CFS, which I foudn to be very helpful.

    But then, one would consider, there must be additional factors involved in recovery besides physical treatment only.

    There was a study published about the effects of strong social ties and emotional support on recovery. It stated that in severely affected cases, there was a 22 percent chance of improvement without either, and with the social/emotional support, the chance of improvement raised to nearly 80-90 percent, which again, is significant.

    Advocating for one treatment, again, is very difficult for CFS. It appears most CFS physicians and medical scientists are sure that CFS is a distinct medical entity, but then, how would you know if you had CFS, as opposed to some other medical condition that was missed in their exam?
  8. Smiffy

    Smiffy Member

    Thankyou so much for taking the time & trouble to write all that jf; please keep us informed as to your progress.
  9. jf26551

    jf26551 New Member

    You're welcome.

    My experience with Nash Petrovic's treatment was very positive, if not miraculous.

    I can not emphaisize enough how essential it is to have a local support base in addition to this physical treatment. Purchasing a treatment from Nash Petrovic is essentially enrolling in a clinical trial. You get a physical treatment, but are very ill, and need a strong emotional support base, and physician to help you with any other medical concerns that you may have during this time.

    Thanks
  10. torilion

    torilion New Member

    I only found your response now..Hope you still come here now and then and see it as well
    I mostly agree on teh things you say...I didn't fully recover on his treatment, but I did manage to get a lot better while most people who are NOT on the treatment, i.e. most people on this board get WORSE.
    I am starting a new follow up soon again. Main reasons:
    * It helped me in the past
    * It has no negative side-effects (besides the first two weeks)
    * It may prevent infections and other problems, note that our immune system is under constant severe pressure...WE need to prevent new problems by taking this 'shield'
    * It is the only treatment that I heard of with this impressive results...I have been in contact with many people who got their lives back by this treatment..I hope I will further improve on it....

    Pepper: You should indeed take it longer to check out whether it works...And maybe there are other possibilites for your B-intolerance. Actually I am getting vitamin sprays now from dr.P..Maybe you can take those?

    Thanks for replies!
    Roland
  11. elliespad

    elliespad Member

    Since we have a renewed interest in Dr. Petrovic's treament protocol.
  12. usanagirl

    usanagirl New Member

    Thanks for all of your information!

    I have Dr. Strand's book "What Your Doctor Doesn't Know About Nutritional Medicine May Be Killing You" and every one of us needs to know about. Very inspiring!