jarjar

Discussion in 'Lyme Disease Archives' started by ANNXYZ, Aug 26, 2006.

  1. ANNXYZ

    ANNXYZ New Member

    What brand of aminos do you use?

    Also , do you know how long the MISERABLE stage of lyme treatment usually lasts ? I have been on ABX for several months and always feel horrible. I still can not tolerate more than 200 mg of Doxy as the herx symptoms are so intense . I am also taking samento.

    How is your progress coming along ?
  2. jarjar

    jarjar New Member

    For esssential amino acid blends I use the house brand at Whole Foods.

    I returned to the Marshall Protocol as I did nothing but lose ground after following the guidelines of my LLMD.

    I was very reluctant to leave the MP but I followed what the doc said. He had no problem of me returning to the MP as I didn't really realize how much progress I had made till I stopped. Its just slow steady progress. Once off the MP for a couple of months I was back to taking naps and realized I was going in the wrong direction.

    j
  3. ANNXYZ

    ANNXYZ New Member

    going to go back to minocyline ? Will you stay with
    with this LLMD ?
    Have you considered trying Stephen Buhner's ideas?
  4. jarjar

    jarjar New Member

    No I started the MP and I plan on finishing it. I walked away from a good thing. Ann if you are struggling I suggest you try it also. It is low dose pulsing abx. If you go to the site you will find that their are a lot of people surfacing that have had lyme/cfs/fm...which we know is all the same thing, are doing great. You just have to set aside 2 years for recovery.
    Look at our friend Sujay she has over 200 patients on the MP at the moment. Talked with her the other day. I just have to follow my gut feeling and this is the road I am on.

    jay
  5. victoria

    victoria New Member

    I thank you Jay for just expressing your opinion...

    sometimes I have doubts about what I'm doing since it inhibits what I can do with my husband and friends... but I've felt it was right all along for me. Just reading what you expressed (exactly what I've felt) really helps... need to go back reading more at MP site to keep me more focused!

    Meanwhile, my son has now been off all abx for 3 weeks at a time and then pulsing 3X/week for the 4th week... for some weird reason he feels better, he thinks, and even a bit better when took the abx that 4th week. .. he has never felt 'better' when taking abx.

    I'm not sure if he's just feeling better by comparison, because the levaquin caused such an intense herx for him, or what... time will tell, next app't for him isn't til October and he is to stay on this protocol until then.

    Thanks,
    Victoria

    [This Message was Edited on 08/28/2006]
  6. lisagra

    lisagra New Member

    hi jarjar

    i started the mp on sunday. i have tried many hi dose abx approaches to treating and have gone nowhere fast. i've been bedbound for most of two years now.

    i'd love to talk more with you about the use of mp in your lyme tx.

    why did you stop doing mP? how long had you been on it.

    i am reg. on the mp site as lisag and on lymenet.

    i'd also like to know about sujays results w/her pts.

    tx, lisa
  7. jarjar

    jarjar New Member

    Lisa will try to PM you on other sites. I was on the MP for CFS but when I found out I had lyme I felt I needed to seek out a major lyme doc. He wanted me to take a break for the MP so I tried only to find myself going in reverse.


    Annxyz

    I read on the MP site today where a patient talked with Dr. Teitelbaum sp at the FM/CFS center and he said they are open to working with anyone that wants to work with the MP. You have to request to be on it and the doc can call Dr. T if he has any questions about the matter.

    Not sure which Dr, you are working with or if you are still with the fibro cfs centers.
  8. ANNXYZ

    ANNXYZ New Member

    I do not have access to benicar , plus I have EXTREMELY low BP . I also am small female w/ ostheoporosis in my family , so I am not comfortable with the NO VIT D approach . I am glad that the MP has helped some people like yourself .

    I am thinking of pulsing my ABX , because I think the toxins are making the process so intense constantly.

    jarjar , are you going to switch to minocyline? also,
    will you use " cyst busters" with the MP , or is minocycline ALONE the recommended drug in the MP ?

    I hope you get back on track soon.

    On another note , I have been using glyconutients
    ( mannatech ) which raise NK cell counts . The smallest amount seems to intensify my ABX response like CRAZY . The herx is far more intense . I had to lower the ABX dose for a while.

    There are articles in the library here about glyconutrients and related studies . You can buy the larix powder thru different sources , not just mannatech , which is expensive.

    The stuff is far more powerful than one would anticipate .
  9. jarjar

    jarjar New Member

    Yes I'm pulsing mino and clindy with benicar. I am doing much better. I will be adding zithromax soon. Then eventually I will be moving on to phase 3 abx.

    Dr. S is real big on ambatrose or however you spell it. She is using it with the Mp and have some good results.
    I probably will be working with it soon.

    If I were in your shoes I would consider benicar only as long as I had some mild stimulants to offset the low blood pressure. That would be something you would have to talk with a doc about.
  10. victoria

    victoria New Member

    I also have low BP... adding salt pills did help me, and I found that over time I seemed to adjust to it and didn't have the symptoms of low BP anymore. I don't now need much of the extra salt I did at the beginning.

    Find a doctor if you can that uses the MP to consult, even if you have to travel a bit; too bad you're not here anymore...

    all the best,
    Victoria

  11. lisagra

    lisagra New Member

    hi all:

    i started mp on sunday. just benicar...probably will take me 3-4 weeks b/f i start mino.

    so far so good. i too was worried about the low bp thing. but it hasn't been an issue YET.

    where does dr. sujay practice. my docs are onboard with mp but neither have had too much success. i'd love to talk with a doc who is using it so successfully.

    i'm in no. calif.

    thanks, lisa
  12. jarjar

    jarjar New Member

    Sujay is not longer accepting new patients as she has a long waiting list. Most people in her practice that have been ill for awhile like me have to look at the MP as slow steady progress. Some that have been ill for a short period may get faster results.

    Since the MP has been around only 2 years I have noticed that more and more people that have stuck with it for 2 years are posting good stories.

    One thing that she is big on is adding glyconutrients as mentioned in a prior post. Some of her patients are doing so well on benicar and glyconutrients that they have stopped the antibiotics. But the majority are still using abx.
    jar
  13. lisagra

    lisagra New Member

    hi jar

    oh sorry to hear dr. sujay's not accepting any new patients

    i do have some ambrotrose here...maybe i'll try folding that in at some point.

    i'd love to chat w/you in more depth. can you find me at lymenet (lisag)...so we can try to hook up.

    really, really appreciate it.

    who is your llmd? i see dr. g in sf and dr. k in seattle. they are the ones's wo rec'd the mp...but haven't seen much success with it with other pts...yet they're still opne to giving it a go in my case.

    do you think in the beginning many ppl just tried to ramp up too fast on the abx...why do yu think there was sucha hi drop out rate.

    i do agree that i see a lots of posts from ppl who have stuck with it doing quite well. i guess it's just the first 6-8months are so brutal it's tough for ppl to stick with.

    take care
    lgrasso_hawaii atyahoodotcom
  14. jarjar

    jarjar New Member

    Some people do have problems with benicar. Also some people don't avoid light like they should If you aren't herxing you are getting too much light.
    Its not an easy path to follow.
    You can reach me on lyme net as jarjar also.