Home Forums General Discussion AP for ALS?

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  • #306315
    kater
    Participant

    I have seen mention here about AP for ALS but do not find much supporting evidence online. Does anyone have any experience with AP slowing/reversing symptoms in ALS? Any info welcome
    thanks
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #361068
    lynnie_sydney
    Participant

    Kate – you may like to take a look at Steven Shackel’s website – he’s a pretty amazing individual and has had longterm ALS – which is considered an oxymoron. I posted a link to his site once before but notice that the site address has changed. It’s now http://home.goulburn.net.au/~shackel/author.htm

    Also, you may want to visit the Karl McManus Foundation website (as well as other Lyme sites). Karl died of complications to undiagnosed neuroborreliosis (which can sometimes be wrongly dxd as ALS or another neurological disease). Here is the link to the site and his story.
    http://karlmcmanus.org/

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #361069
    Trudi
    Participant

    @kater wrote:

    Does anyone have any experience with AP slowing/reversing symptoms in ALS? Any info welcome
    thanks

    This article may be of help–
    http://www.waisbrenclinic.com/ALS-MS-lyme-disease.html
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #361070
    Parisa
    Participant

    I would also do some searches on Lymenet http://www.lymenet.com . There have been success stories for ALS posted there. I believe it depends on the type of ALS, bulbar vs. nonbulbar. The type of AP treatment if I remember correctly is also very important as some types of treatment will make it worse. In the movie Under Our Skin they profile a doctor (Dr. Marston?) who came down with ALS and was able to recover. Treating for Babesia I believe was very important in his case.

    #361071
    Parisa
    Participant

    Here’s a link to a post by Sarah/California Lyme on Lymenet from June 2007. Sarah was very knowledgeable about Lyme and used to post frequently on Lymenet. She was very active with a Lyme/ALS support group. There was a problem at some point and she was banned from Lymenet. I don’t know if she’s active on any other Lyme or ALS sites anymore.

    http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/55491?

    #361072
    A Friend
    Participant

    RBFV EDIT to remove Lyme Literate MD Physician’s full name as per forum guidelines. Thanks for your understanding.

    Thank you so much for editing my post to comply with forum guidelines.

    I need to review these, as my understanding must be “out of date” — my thinking was if doctors/authors had published information, it was different.

    Will go immediately to find and read the current RBF BB forum guidelines. I am so very thankful for those professionals who do so much to help us, and would never want to post what should not be posted.

    Thanks again,

    #361073
    patty3722
    Participant

    Kate,

    I just posted information on autoimmune disease.

    Go to http://www.lowdosenaltrexone.org or http://www.LDNers.org

    there is alot of info on low dose naltrexone treatment of all autoimmune disease including als and ms.

    this is very interesting.

    Patty

    #361074
    A Friend
    Participant

    @kater wrote:

    I have seen mention here about AP for ALS but do not find much supporting evidence online. Does anyone have any experience with AP slowing/reversing symptoms in ALS? Any info welcome
    thanks
    kate

    Kate,

    Some very interesting and exciting information for me has been finding that amino acids so very helpful for many chronic illnesses. I took it daily for 6 months a few years ago, and it was amazing what it was able to do.

    More recently, the son of a lady with ALS inquired about information about treating it. The searches I did uncovered this link and information. (Exciting, as I had already more recently been researching/reading more on non-denatured whey protein — and am using it for more current problems.

    Am pasting the link pertaining to ALS. Hope it opens for you. If not, I can send you a PM with info in it.

    Quoted material follows:
    http://findarticles.com/p/articles/mi_m0876/is_n54/ai_9252097/

    Amino-Acid Studies Raise Hopes: Nutrients May Reduce ALS Als (

    #361075
    kater
    Participant

    Thanks to all of you for your informative replies. I am just inquiring on behalf of someone with ALS. I will pass all your suggestions along. There seems to be so much withholding of information so I just thought if there was anything I could find out to be of potential help to this person it would be only the right thing to ask all of you who know so much!
    with gratitude
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

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