Attention: Victoria

Discussion in 'Lyme Disease Archives' started by HppeandMe, Jun 22, 2006.

  1. HppeandMe

    HppeandMe New Member

    You are such an inpiration and so helpful and I truly do appreciate that. You said your son is on the Marshall Protocol. I know my Dr. has me on a somewhat different kind of Marshall Protocol. I am really unfamiliar with this protocol. I have heard about it with CFS and Fibro but not for Lyme.

    I know with CFS and Fibro. that they are to get no light. I don't beleive this is the case for Lyme patients. Can you fill me in on what the Marshall Protocol is for Lyme?

    You also asked someone if they were also on Flagyl? Is this important to be on and is this part of the Marshall Protocol that your son is on?

    Thanks for your time!!
    Hope
  2. victoria

    victoria New Member

    I find everyone here to be so supportive and helpful... whatever one of us doesn't know, it seems that someone else is bound to know or know where to find out! I never would've thought or even known about Lyme if it hadn't been for especially these boards, or about the Marshall Protocol either.

    My being here saved us (DH & I & son) a lot of what would've otherwise been lost time and money as well as chaos and anguish in being able to get a (comparatively somewhat quick) diagnosis for our son.

    But, it is me that is on the Marshall Protocol, the 'original' not modified lol......... not my son...... it is a rare teen that would be willing to do it.

    Marshall, the last I read, was following a group of 'known' chronically lyme infected people who had not been able to get well with prolonged abx, oral or iv; I don't have any idea as to what percentages etc are getting better, but apparently there are a significant number that he is following.

    And I am sure they stay out of the light too, due to the increased inflammation that is caused etc...

    The same is true of what population I would be in, those dx'd with CF/FM.

    It seems that if one has one or more known diagnoses of these stealth pathogens, there are often even more to contend with... HHV6, mycoplasma, whatever, as they are all opportunistic.

    I have not been tested for lyme or mycoplasma or anything else, and right now don't intend to be except for possibly the Bowen test... the reasons why:

    First: because most of our $$ is going toward our son, no health insurance for either of us and we've spent at least $12K on his testing/treatment for the past 13 months...

    Second: I immediately responded to just taking the benicar - all my hip pain that I chalked up to arthritis (have had bone spur in foot) went away after 4-6 weeks of just taking it; so results are what count for me, and altho it would be nice to know exactly what I might have, I don't have the $$.

    Third: I'd probably just show negative anyway since I've had symptoms since I was 18 (almost 55 now). And if it isn't lyme, it's probably some other stealth pathogen anyway.

    It is a very trying disease to have, to say the least, isn't it?... it seems as if there is no one magic silver bullet like we all have come to expect once we do get a firm diagnosis!

    At least if one is doing the abx as rx'd by LLMDs, one needs to take the Flagyl as it is the drug of choice to dissolve the cysts that the spirochetes hide out in.

    I don't know how that piece of information fits into the MP as I only know what Phases 1 & 2 are... but I do know that after I'd finished phase 1 last July or so, I was really starting to feel good.

    I delayed Phase 2 because my very elderly inlaws then came to live with us, long story, but they increasingly required a lot of care and I kept thinking I couldn't deal with herxing plus them... wellllll long story short, that was a dumb idea!

    At least redoing Phase 1 is not as difficult as the first time...

    Hope I answered all your questions (probably then some lolol).

    How has the MP Protocol been modified for you?

    all the best,
    Victoria

  3. HppeandMe

    HppeandMe New Member

    Thank you so much for your great response! You are so helpful!! I am not sure how it is modified since I was under the impression it was for people with CFS and Lyme but I will find out at the next appt. in 4 weeks.

    I am also on Benicar with this new doctor who has me on the modified Marshall Protocol. Actually it was the nutritionist who told me that is what this Lyme program was (my memory is so bad I can't remember who told me).

    In any case, did you have problems with Benicar lowering your blood pressure? I am scared about that. They only have me on a small dose but that is scary enough. I am usually about 117/70. Perhaps I'll be just fine. I keep worrying about the What If's my therapist told me.

    It is so funny but I think we all do.

    Please be tested for Lyme. I know it takes a lot of saving money to do or like you said you can do it at the Bowen Clinic but do it. My only concern is I have heard that almost everyone is positive at the Bowen clinic although that could just be a rumor.

    Take care of yourself or you won't be able to take care of your son as well!!

    I know it is harder to say than to do!!

    Many Hugs!
    Hope
  4. victoria

    victoria New Member

    was originally developed by Trevor marshall for sarcoidosis as he has this autoimmune condition himself... he is in remittance as are many sarcoidosis pts who followed the MP. Traditional med had nothing to offer them, but is still resistant.

    I first heard of it when ProHealth here did an interview with him a couple of years ago regarding using it for CF/FM, and also a patient following the MP for CF/FM did an update on her progress as well; it is in the Library for CF/FM.

    (Don't you just love how standard medicine now often blames anything they don't know how to treat on being an 'autoimmune condition'? I guess it IS somewhat better tho to hear that rather than being told it is in one's head?)

    'Standard' as far as I know is taking the Benicar regularly and then adding in minocycline beginning with 25 mg and moving up to 100 mg by increments, depending on one's herxes. But I know there have been some alternatives offered.

    The Benicar did lower my BP initially but after about 4-6 weeks I was no longer dizzy; I'd also upped my salt intake to help counteract the effect. My BP was also low anyway, used to follow a no-salt diet years ago just cuz I thought it was healthier, finally realized that it was affecting my BP. But it has always been low, and they've always had a hard time finding a pulse even... LOL, saying I live like a vampire may not be too far off!

    And now, after looking at the Salt/Vitamin C protocol, I wonder about the possible beneficial effects of the salt too, since I do use the 'good' salt.

    Yes, I will probably do the Bowen test, eventually, if anything just to see what is going on - have seen others using it to help determine how well they are doing with the MP and other protocols. The 'count' does go down as the infection is taken care of, and I have read others' posts about getting a negative.

    And you're right, one can't take care of others when one doesn't take care of one's self... but it IS near impossible when you're herxing. That's been my dilemna for far too long, but I have been extra extra good now!

    How are you doing this week - is your app't this week?
    Victoria


    [This Message was Edited on 06/26/2006]