Hello Victoria

Discussion in 'Lyme Disease Archives' started by HppeandMe, Jun 28, 2006.

  1. HppeandMe

    HppeandMe New Member

    Hi Victoria-

    Thanks for your post on the Marshall Protocol. I so hope this is the right move for me.

    If you are on the MP why don't you have your son on it as well??

    Has it helped you?

    I believe mine is modified as I don't avoid the light or the vitamin D.

    I can no longer make decisions and hope this is the right one for me.
  2. victoria

    victoria New Member

    that is an interesting modification, I'm surprised Marshall went along with it? It will be interesting to see how you do.

    The reason why my son is not doing it -

    because of the light restrictions, as the doctor I've used does agree with it.

    The clothing and NoIR sunglasses and staying out of bright lights are not something most teens would willingly do until/unless nothing else works. (It is hard enough for me)

    He is on his own now, and if he's not willing to follow the restrictions, then it is a moot point.

    How are you feeling?
    Victoria



  3. jarjar

    jarjar New Member

    I went on the MP when I had a CFS diagnosis with Dr. Sujay who use to post often on this board.
    I was on it for around 14 months.

    I was later diagnosed with Lyme and my LLMD encouraged me for the time being to leave the MP and work with other abx. At some point and time I may return to the Mp.

    I can tell you right now even though you aren't asking for my opinion....that you are wasting your time on the MP if you don't wear the required sunglasses, avoid D and sunshine.

    I tried the MP for the first month or 2 with out wearing sunglasses in the grocery store etc. and was not making headway. When I followed the full MP I started making progress. Please either commit to it all the way or don't waste your time.

    Been there done that!

    Jar

    [This Message was Edited on 06/28/2006]
    [This Message was Edited on 06/28/2006]
  4. victoria

    victoria New Member

    I agree about the light, I know there's a difference as well.

    I'm curious - what improvements/progress did you experience while on the MP?

    Victoria

  5. jarjar

    jarjar New Member

    Looking back my feet pain was roughly 90 percent gone. It started resurfacing about 1 month after being off protocol.

    I just started working with rifampin for bart which is what causes foot pain. So we will see what that does for that problem.

    My energy and cognitive skills had slowly but steadily improved. It is a very slow progress but I was going in the right direction.

    I had mixed emotions about following the dr's request and getting off of it. Looking back though we found my hormone levels had gone thru the floor and they needed to be addressed.

    So how has your progress been?
    [This Message was Edited on 06/29/2006]
  6. victoria

    victoria New Member

    there is a risk to almost anything anyone tries...

    The Benicar alone got rid of what was becoming crippling pain in my hips and I got a whole lot more energy... and I do think my sinus headaches were getting better. I also found that I did not need thyroid med anymore! (I was on 3 grains)

    But I'm starting basically over again, due to 'life's interference', altho not herxing much happily.

    I do worry about my son taking all these heavy duty abx, he is currently taking levaquin for suspected bartonella . After reading on the CF/FM board about some people's awful reactions to it, it is a particular worry, but he feels a positive effect so far. He says it feels like it is changing something for the better in his brain.

    During the 'holiday' from abx after the first month of abx (during which he had a huge herx), and to a lesser extent after the second month of abx, he also felt different -- said during the week off abx that even colors looked more intense, he felt he could "see" things more clearly, & music sounded better/more intense.

    This is the only other time he's felt something different cognitively. . . altho he says this time it is in a different way.

    best,
    Victoria


    [This Message was Edited on 06/29/2006]
  7. HppeandMe

    HppeandMe New Member

    I am so confused! This doctor was recommended to me because he has helped so many people. In fact I meet many of them when I go. He also does IV's every week. One with Vitamin C & other vitamins, 1 Hydrogen Peroxide, and 1 Myer's cocktail.

    It would be less expensive to go back to my other doctor and just get antibiotics. I just don't know what to do.

    I have so much stress on me now. I can hardly stand it! I shouldn't be working but will have to be until I sell the house. I am going to prepare the house while my children are in S.C. at my brothers. My husband is not helping me. If we do sell our house (which I am praying we do, we have 5 other homes on the street that are for sale to) I don't even know where we are going to go or what we will be able to afford. My husband makes very little and I will be going on private disability. According to the government we will make to much for any assistance. That was a real kicker. I don't know how we will feed the family and get my medical treatment and pay for the bills. I just can't this anymore!!!

    I can't stop crying because my world has crumbled!!

    Sorry, I am just going through the worst thing I have ever gone through in my life. It is more than I can handle!
  8. victoria

    victoria New Member

    I am so sorry to hear what you're going thru. Truely, having to deal with these health problems is bad enough without all the stress that it brings from its impact on the rest of our lives. There is not much of a safety net in this country at all.

    About the MP, I know there have been some modifications to the abx's used and dose of benicar, but I didn't think anything to do with avoidance of D and light was changed... you might want to check by doing some reading at the Marshall Protocol site yourself and/or post a question. I don't know how you could ask exactly for proof that this doctor has been in contact with Marshall... but your answers to the above may be answer enough.

    The other possibility, if you choose to go back to the other doctor, is to go to ilads.org and the lyme net flash discussion group as there is a section for asking for referrals to LLMDs. You will likely get excellent feedback this way as it is possible to do instant messaging there and find out what your other doctor's (who treated you with abxs) track record is. And/or get the name of another doctor.

    I know that if I had not done this, I would've wasted time and money seeking appropriate diagnosis and treatment within the Atlanta metro area for my son.

    This is a rough disease to treat economically if you choose to do the abx cycles... if you ultimately need IV abx, it can run about $1,000 per week. Even Medicaid will not pay for more than a month of IV abx.

    And many of the abx are pricey - I'd order from Canada for my son except the lead time is too long (their price on Levaquin was only $5/pill) - his oral abx usually gets changed every 4-8 weeks or so.

    One thing you can try is contacting the manufacturers of each medication you're on. My understanding is that you will have to deal with the companies per medication instead of getting an overall okay from each company. Of course this probably won't be possible regarding the IVs done at your doctor's office, I believe, but you might ask at your doctor's office if this is possible to do as well.

    I am working on getting approval for the Levaquin at a lower rate for my son from the mfr, if not outright free, since he has no resources and is over 18. . . in the mean time we were able to get samples but have still had to pay for a few pills, at $22/per pill!

    If you are on private disability, you can apply for SSD after 6 months I believe, this is what my husband did... and then get Medicare, but I think there's another wait time (another 6 months?--not sure). My husband was lucky to be disabled almost immediately (not for lyme), as there isn't retro-active Medicare.

    It is discouraging. - it's no surprise it was found that the major reason middle class families do go under financially is because of major health crises and no or not enough insurance to cover it.

    Sorry if I rambled a bit, I went back and tried to edit a bit; I hope this made some sense and gave you some ideas at least.

    Take care,
    Victoria





    [This Message was Edited on 06/29/2006]
  9. jarjar

    jarjar New Member

    Very seldom do I read a post and be so moved that I say a prayer for them and for there house to be sold!

    I don't have time at the moment to cover everything you have brought up but my heart goes out to you and your family.

    I can say as much Hell as all of us have gone thru with this disease over the years some how....some way...things work out. They just do. Don't get overwhelmed by all of this at one time.

    I can remember so many times I have been tested with finances and sickness and some how things worked out to my dismay.

    HUGS

    jar




  10. HppeandMe

    HppeandMe New Member

    Thanks for your help & Support!!!

    Hugs to you both from Hope!!!