MarshallProtocol in latest newsletter.

Discussion in 'Fibromyalgia Main Forum' started by ultrafeel, Nov 21, 2006.

  1. ultrafeel

    ultrafeel New Member

    Hmm...

    Again the Marshall-protocol comes into the spotlight.

    Anybody here who had any positive effect of this controversial treatment protocol?

    I have heard lots of positive testimonials on treating sarcodiosis - but not ME-CFIDS-CFS!

    What do you think?

    thanks
    fox
    Switzerland
    www.cfs-healing.info
  2. victoria

    victoria New Member

    I have, altho I've been on hiatus due to other problems, but got rid of crippling pain in hips, found I didn't need thyroid anymore within 6 months of doing phase 1... I expect more and greater things once I can progress. I have CFIDS. And probably lyme or other stealth pathogen...

    Others are still here like JarJar who is on it for Lyme, just put Marshall Protocol in the search box up above and you will see lots of posts made just in the past year.

    There are quite a few people including some medical professionals who used to be here who are at the site for the MP, getting better themselves, who have had dx's of CF/FM plus stuff like mycoplasma, and have pts doing it as well.

    all the best,
    Victoria

    PS: like everything else, tho, it is not a magic bullet -- it seems not everyone who has tried it has been able to stay on it for various reasons/complications.





    [This Message was Edited on 11/22/2006]
  3. victoria

    victoria New Member

    I saw you made a post about using "magnetic field therapy"...

    could you talk some more about this? I'm curious exactly what you've done, I have seen different sites about different things that could all use that term...

    ie, one site talks about the effects from electrical fields from our houses and cellphones etc on our bodies; another talks about using it in a clinical setting in a very directed way to cure depression.

    Thanks
    Victoria

  4. jarjar

    jarjar New Member

    Go to their web site and search out their success stories. You will find plenty of cfs/fm/lyme patients recovering or recovered.

    I have been ill for ages and I feel the best I ever have.

    Sujay a doctor that use to post here has over 200 cfs/fm/lyme patients on the protocol.

    The best tip I got from her was to include glyconutrients with the protocol. Only start out with a tiny bit or you will have too much bacterial die off to deal with.

    Please do yourself a favor and read the site. Feel free to ask anymore questions
    J
  5. victoria

    victoria New Member

    are you still around here? or missing in action?

    this is a bump for you... would love to know what you were talking about re: 'magnetic field therapy'...

    Victoria
  6. victoria

    victoria New Member

    see my post above... hope you're ok?!

    Victoria

  7. ultrafeel

    ultrafeel New Member

    Yep, I am here again...was busy with other projects and busy with relaxing...


    I have been on the marshallprotocol-forum for quite some time, and have read some extremely dissapointing stories from ME-CFIDS-CFS patients who tried the protocol. Some talked about horrible side-effects!!

    I tried it with an alternative angiotensin-blocker (Not Benicar - because Swiss insurcance doesn't pay this medication), with no effects at all.

    It didn't even touch the surface of my ME-CFIDS-CFS

    Then again, antibiotics in various combinations have never ever made any change in my illness.

    fox
    www.cfs-healing.info
  8. victoria

    victoria New Member

    perhaps benicar would have, but hard to know. And yes, as we all know, not everything works for everyone... have read disappointing stories about all the protocols offered actually, myself.

    And thanks for your post aboutthe magnetic field therapy!

    best,
    Victoria

  9. jarjar

    jarjar New Member

    I agree with Victoria I wouldn't judge the protocol by using different medications then what is recommended.

    As far as you reading post of people having a tough time. You are reading of people that are having to deal with a lot of bacterial die off and that part is not fun.
    But you have to look at it as this is the bacteria that has been keeping them so ill.

    I have found the people that are doing well on the protocol don't post that often as they are not incurring major problems, they are feeling better so there is no need to post.

    If one does want to follow this path they need to set aside 2 years.


    [This Message was Edited on 11/30/2006]
  10. munch1958

    munch1958 Member

    I have sarcoidosis and would never consider this protocol. The drugs don't scare me but the lack of vitamin D does. I'm not about to cover up my windows and wear protective clothing and sunglasses 24/7.

    If you go outside you are supposed to smear zinc oxide ointment to all exposed parts of your skin. With everything we know about cancer and low levels of vitamin D the protocol does not merit consideration.
  11. Mikie

    Mikie Moderator

    I am very happy for everyone who is healing on the MP.

    After careful consideration, I decided it is not for me. I have made great progress on the protocol Sujay was using before going to the MP. Despite a couple of setbacks with my gallbladder and now this abcessed tooth, I keep getting better. It's slow progress, to be sure, but it is progress.

    I live in SW FL and one of the reasons I moved here was for the sun. My condo has white walls and windows on three sides with a large pool on one side and a pond on the other. The water reflects the sunlight into my home all day long. I cannot imagine living without it. If we have a couple of cloudy gray days in a row, it gets very depressing for me. When I lived in CO, I had SAD in the wintertime.

    Also, I question the long-term safety of the vitamin D issue. I don't know that this protocol is unsafe but I'm not convinced it is safe either. Time will tell and I hope it turns out to be safe and that everyone making the sacrifices to be on this treatment will reap the healing benefits.

    Love, Mikie
  12. jarjar

    jarjar New Member

    That the infamous Dr. Teitlebaum has been using the marshall protocol and told me verbally that he thinks that the science behind it is brilliant.

    As has been mentioned it may not be for everyone but I thank my lucky stars that I feel as good as I do.
    Especially with the added recomendation from Sujay who has dedicated her practice to it.

    The marshall protocol board will explain any needless worries about lowering your D levels. The site plainly explains it.

    Best of health to all

    J
  13. Mikie

    Mikie Moderator

    About the vitamin D issue were answered, I just don't think I could avoid the sun. Like I said, though, I'm very happy for everyone who is benefitting from the treatment. I think Sujay is an excellent doctor and a very nice person. I miss her here.

    It was she who got me started on her old protocol which is working well for me or, at least, it would if I could get these sources of infection and inflammation out of my body. One source (gallbladder) down and one (abcessed tooth) to go.

    Love, Mikie

  14. Kombucha

    Kombucha New Member

    Hi mikie,

    I'm in Sarasota myself. Could you tell me the Sujay protocal you are doing?

    I wouldn't touch the Marshall Protocal with a ten foot pole and umbrella at the end, exactly because of reducing vitamin D levels for 1 year 2 year. I think this is the most dangerous protocal I've come across with likely long reaching poor consequences into the future. I will not take the risk.

    Of course 5 years from now if the cure rate is 95% and that demographic only has cancer to what would be predicted for a normal sample, I might change my tune.

    Linda
  15. Mikie

    Mikie Moderator

    I love the Sarasota area. I used to drive up to see clients now and then. I love the little St. Armand's (or is it Ormand's, I can't remember) Beach shopping area.

    Sujay was either working with Dr. Brewer or using his treatment protocol as a model before the MP. It is a lot like what the FFC's are doing--ridding the body of infections and the blood of fibrin. I think this is becoming pretty standard for most docs who treat FMS/CFIDS now.

    Thing is that I started with the Doxycycline 6 yrs. ago for mycoplasma infection because my doc and I knew that this is what triggered my illnesses full blown in 1990. I was a year into the 2 1/2 years of Doxy when we discovered I had some kind of chronic viral infection or infections. At that time, I started the Famvir and was on it for 1 1/2 years.

    It was then that Sujay was talking about the fibrin issue and my doc and I decided to do the Heparin injections empirically. I'm in an HMO and everything we have done has been empirically. It is the immune responses and Herxing which convinced us that we were on the right track.

    We felt the infections were pretty well under control, so I switched to the transfer factors because if there was HHV-6, the AV's aren't as effective as the TF's. I had a huge immune response to both the Heparin and the TF's and had to back it down a tad until I could tolerate them.

    Either no one was doing this protocol when I started or it wasn't well publicized. I stumbled onto Dr. Nicolson's work with mycoplasmas by searching online. As my docs and I learned of new things, we tried them. So, while we were doing the things Sujay and Dr. Brewer, and now other docs, were doing, my timeline was completely different. At that time, my docs and I were working basically in the dark, trying things. We were lucky in that what we tried has worked. We were all lucky here to have Sujay. She was a tremendous help to me.

    I didn't mention that all this time, I was taking the Guai for my FMS and Klonopin so I could get some restful sleep. Both these meds are pillars of my treatment regimen. My FMS symptoms, for the most part, are reversed, leaving me free to try to treat the CFIDS. Six years ago, I was bedridden most of the time and on morphine for pain. I've made steady, but slow, progress on all these things. There have been bumps along the way, but the healing I've achieved is evident when I look back to those early days.

    I have taken probiotics for years and added colostrum and undenatured whey to help build up my own immune system. The probiotics allowed me to be on the Doxy for 2 1/2 yrs. with no stomach problems.

    I hope this helps. My treatment was probably the first generation of what is now more streamlined. I just did things in a different order. One of the benefits of this is that I was able to better tolerate the treatments. I think some of the new docs are a bit too aggressive in their approach and then unavailable to their patients when they have problems tolerating their treatments.

    Love, Mikie
  16. Kombucha

    Kombucha New Member

    Thank you for the history of what has worked for you. And by what process, mostly fortuitous for you.

    Linda
  17. Mikie

    Mikie Moderator

    I don't expect that what has worked for me will necessarily work for everyone else, but the exchange of ideas here is most helpful. It is what sparked all my treatments.

    A few things didn't work our but for the most part, they did.

    Good luck to you.

    Love, Mikie
  18. jimbbb

    jimbbb New Member

    I suppose it is not hard to worship Vitamin D -- most of the medical establishment does and wants you to do so.

    But be careful what you wish for since it is not the Vitamin D (25,D)levels that you have to worry about it is the active 1,25D version that is produced (and seldom checked and easily botched in the testing). Anyone with CFS/FM/Lyme/Sarc will no doubt have plenty of paracrine (in tissue) 1,25D no matter how much 25,D they take or don't take because their bodies (the infection) produces it in an unregulated manner (the 1,25D feedback path to the kidneys is bypassed).

    And as far as feeling better with Vit D supplementation -- that is because it is known to have an immunosuppressive effect at higher concentrations (it displaces 1,25D in the Vitamin D Receptors preventing their activation -- plus some other hormonal receptors as well).

    And to make matters even worse -- really high levels of 1,25D are also immunosuppressive! You just can't win with this stuff!

    So high levels of 25D (supps or sunshine sources) will make you feel better and lower lowering levels (no supps/avoid sunshine/lights) will make you feel worse.

    And on top of that there is a very efficient pathway thru the eyes directly to the Amygdala which can also produce 1.25D that causes neuro symptoms/brain fog/Sx Flares directly (and even worse it can have a delayed effect so you don't sense the cause and effect).

    Sure is an Alice in Wonderland world that these beasties have come up with. But if it was easy to understand and combat, they would have had a simple cure long ago. I am amazed we've come this far even.