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  • #307289
    bonnielou
    Keymaster

    Hello all — I don’t know how many of you subscribe to the NY Times, but in Sunday’s magazine yesterday was this article:

    http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?partner=rss&emc=rss&_r=0

    It’s the first time I have seen a really mainstream publication talking about RA, other autoimmune diseases and infection. There’s emphasis on leaky gut, diet, supplements, etc. My husband read the article, and it helped further his understanding of why the traditional approach is not ideal, and why I dragged him with me out to see Dr. F in California rather than follow my rheumie’s recommendation to start methotrexate. Anyhow, read it! Shep’s story is very encouraging, especially for those of you who have children suffering. Enjoy.

    Bonnie

    Bonnie Lou
    RA 02/07,AP 10/07
    Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
    Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

    #366951
    lynnie_sydney
    Participant

    Great article! Thanks for posting Bonnie

    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)

    #366952
    Anonymous
    Participant

    Good article indeed.

    It just feels like our battle isn’t against RA, but rather against pharma companies that won’t do research on curative methods. They’ll instead find medication that’ll control symptoms better, have less side-effects, and keep people alive longer on their meds.

    There should be some sort of fracture between research and pharma, but then again it’s impossible since curative treatments involve medication as well, so pharmas are always going to be in the picture. Stock markets dictates that profits from a company is the number one thing.

    It is always to same equation: profits = disease + no cure + meds that sick people feel better one.

    #366953
    Anonymous
    Participant

    @aoshi_xken wrote:

    It is always to* THE same equation: profits = disease + no cure + meds that sick people feel better one* ON.

    #366954
    Valsmum
    Participant

    Great article.
    I am feeling so much better eating the same way the little guy in the article eats. What is the “four marvels powder”? I never heard of it.

    #366955
    richie
    Participant

    Medications that control symptoms -have less side effects and help us live longer isnt so bad at all –Billions and billions have been spent on research to find cures for cancer over a period of about 50 years –yet certainly we cant call cancer curable –at best -control symptoms -less side effects and hopefully extend life —-Cancer worldwide is probably 20–50 million people maybe more –so a maximum effort is going into that research —-Scleroderma affects 400,000 people worldwide –certainly in comparison to cancer -only a miniscule amount of dollars is earmarked


    I dont see why a pharma should not expect profits from their research —they put out large amounts of money and are entitled to a return on their investment –thats called capitalism —Basically the nature of medicine as we know it is to control matters and improve quality of life —Chasing cures is mainly in fairy tales –Lets take a few common killers of say 50- 60 years ago –High Blood Pressure –Certain Cancers —Incidence of heart disease and on and on —No cures but keeping things under control –I think that is the goal of western medicine —Same goes for our illnesses


    and quite frankly I am perfectly satisfied with that .
    richie

    #366956
    lynnie_sydney
    Participant

    There is a misconception about cancer. There is no single illness called cancer, there are over 100 different illnesses that have in common abnormal cells that reproduce without dying. However, each one is different and there will never be a single “cure” found.

    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)

    #366957
    richie
    Participant

    Hi–Good point –but to further my point –there arent really cures for any of it -rather remissions and for most folks thats good enough !!!

    richie

    #366958
    Anonymous
    Participant

    Unfortunatly, there are cases where the underlying cause has to be treated or else people are on medication for the rest of their lives.

    Two examples come to mind (link to microbiology):
    1) Nobel Prize for H Pylori linked to stomach ulcers
    2) Parasites for IBS (around 46% of cases)

    Once a disease is understood, it is curable. When to cause of illness is unknown, than we manage symptoms. And research isn’t done on finding the cause, but rather alleviate symptoms. As you say Richie, that’s good. But more is better…

    I’d need an example of a disease that is uncurable that isn’t a virus (ebola, HIV) because other illnesses that are still uncurable are those that are misunderstood.

    #366959
    richie
    Participant

    Hi–Theres an awful lot thats misunderstood then –and I dont really think things will change so managing symptoms is really a realistic approach and doable –Cures While admirable probably in most cases arent doable for all kinds of reasons —
    richie

    #366950
    Anonymous
    Participant

    You’re right.

    And things DO need to change. For now, we can only hope the new insights that are to come thanks to the HUMAN MICROBIOME PROJECT in Europe and here in North America will finally prove that human gut flora / food choices is a staple of human health.

    #366948
    wib411
    Participant

    Hi aoshi_xken:
    I assume you are following Specter at NYU Med School RA Department from your biome comments. Good luck with Enbrel. It worked pretty well for me – symptom control for 5 years, then fell to perhaps 15% effectiveness. So far, 8 months of AP have shown no results but I am still hoping. MTX zapped my lungs and the RA exacerbated fibrosis. My thought is that a strong antibiotic, CIPRO, unbalanced my biome and I developed RA as a result. Perhaps Dr Brown’s protocol might have helped 8 years ago, but if it will provide adequate control for me, now, is unknown. NYU Med School is doing research that may lead to identifying what may be a set of anti RA biome members (which may include virus, fungi, bacteria, ? etc). My assumption is that whatever is found, it must be difficult to reintroduce to the biome. I play in the dirt a lot, and am still un-re-inoculated. . Might be a sequential situation a la H. pylori that is probably benificial for youngsters, but turns nasty at middle age.

    My concern about Enbrel and biologics generally is the unknown side effects. I saw one articlele describing brain demylinization. Might be idiosyncratic, and yet I do not want to risk my dwindling neuron inventory.

    Michael Specter is a readable author. The link below is one item, but he and the group at NYU have other articles published.

    http://www.newyorker.com/reporting/2012/10/22/121022fa_fact_specter

    Wib411

    #366947
    Maz
    Keymaster

    Interestingly, the Lyme support group to which I’m registered posted the following study yesterday, which is pretty relevant in light of the mother’s comments about abx possibly causing her son’s JIA:

    http://www.ncbi.nlm.nih.gov/pubmed/21920946

    Use of penicillin and other antibiotics and risk of multiple sclerosis: a population-based case-control study.
    N

    #366943
    Krys
    Participant

    @Maz wrote:

    “Thus, this study found that penicillin use and use of other antibiotics were similarly associated with increased risk of MS, suggesting that the underlying infections may be causally associated with MS.”

    Great article, Bonnie, although I had to wonder why the mother hadn’t really questioned the triggering infection as being a potential cause of her son’s JIA? The Danish authors in the above study, on the other hand, did a retrospective study, following MSer use of abx prior to the beginning of their health problems and their focus is not on the abx but on the infection for which the abx was needed as being causally-related.

    My MS symptoms resolved on abx within the first year of AP.

    I noticed that anything fermented and replete with enzymes calms down my brain (when there’s brain toxicity, like during Bartonella and Babesia treatment) and quietens buzzing in the gut. As much detox as I can do, is always huge help!

    Great article, Bonnie!
    Krys

    #366946
    Jan Lucinda1
    Participant

    Bonnielou-

    Great article. Thanks.

    Jan

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