Home Forums General Discussion New Systemic Scleroderma Study on Gut Microbes and Dysbiosis

This topic contains 6 replies, has 3 voices, and was last updated by  Maz 6 months ago.

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  • #459240
    Maz
    Keymaster

    Brand new research on the gut-microbe composition of systemic scleroderma patients in both the US and Norway has been conducted and this study has now been added to the Scleroderma Research section for anyone interested.

    Systemic sclerosis is associated with specific alterations in gastrointestinal microbiota in two independent cohorts. BMJ Open Gastro 2017; 4:e000134.

    Norwegian (Oslo) and American (UCLA) university researchers collaborated in a controlled-study to examine gastrointestinal bacterial composition in order to determine if geographical and ethnic variations in lower gastrointestinal tract dysbiosis bears any relationship to systemic scleroderma (SSc) pathogenesis. Their findings suggest that SSc patients had higher levels of inflammation-causing bacteria in the gut than bacteria that are believed to afford protection against inflammation and that this finding was more evident in North American study participants, which the authors believe may be due to diet and genetic variations.

    To read more: Science News commentary, published on May 12th, 2017.

    Not only does this study imply that diet and genetics may be involved in systemic scleroderma pathogenesis, but that Dr. Brown’s approach to modulating rheumatic disease by treating causative microbes that interface with immune function seems to be in alignment with contemporary human microbiome research.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #459242
    lynnie_sydney
    Keymaster

    Nice find – very interesting piece of new research!

    Cause/effect possibilities still being debated it seems – and my sense is that it may turn out to be ‘both/and’ rather than ‘either/or’. But, whatever, the gut seems to be increasingly implicated in all forms of rheumatic disease

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #459245
    Maz
    Keymaster

    Yes, probably “all of the above.” Environmental toxins and acute and slow infections altering the gut microbiome, leading to dysbiosis, and bad bugs driving inflammation while their antigenic substances mimic our cellular proteins coded by our unique genetic haplotype-makeup. We are now known to be more bug than human in that bugs outnumber our own cells by 9:1!!! Bugs (good and bad) drive everything from digestion to brain function on cellular levels. I think human microbiome studies will eventually lead to individualized medicine for autoimmunity, whereby poop samples will inform docs which bugs to replace in the gut to normalize immune function. My old Dad (a veterinarian) cured many ailments in animals with on-site poop transplants, literally taking fresh feces from a healthy cow and transplanting it into a sick one, by hand. Vets have used this technique for decades…but it can take several generations of medical docs to flip a human medical paradigm. It’s an unpleasant thought to transplant poop and still many unknowns about how some bugs may harm or help individuals, but am sure some ingenious scientist will conquer the problem with individualized poop pills. This research is already going on – has been talked about here before – as amazing results are being experienced for C. Diff. patients:

    Docs Create Poop Pills That Transfer Feces From Healthy People Into The Guts of Patients With Infections

    Aussies are fortunate to have Dr. Borody, a gastroenterologist in Sydney, who has reported on cases where he’s done fecal transplants for gut infections and patients with autoimmunity have experienced incidental recoveries. He’s also spearheading the Redhill triple antibiotic formulations for Crohn’s and other autoimmune diseases.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #459537
    richie
    Participant

    Hi Maz –Sorry if I am negative about all these studies -which have gone absolutely nowheres in the twenty years or so I have been involved –this imo is a waste of time also –what about the effect of probiotics on the gut -how does that fit in .– UCLA pushed and pushed cyclosporine as the answer to scleroderma -study after study extolling its virtues –Now its in the trash bin along with other “cures” relaxin and others —Still no progress in finding treatments for the overall disease —still the negativity in the use of antibiotics for treating scleroderma –The medical and scientific community up to now has failed —I am afraid in the future the standard bearers for antibiotic in treating sclertoderma will become extinct ..

    #459544
    Maz
    Keymaster

    Richie, I’m with you there. It’s important to keep a sense of healthy skepticism, because too many research roads wind up at dead ends. Microbiome research is the “thing” of the present, but as studies like this seem to be going on across the board for autoimmune diseases, and gut microbes are pretty much accepted now as driving immune health and interacting with and manipulating the human genome, we could be seeing some interesting treatment approaches coming out of this. I think while it’s pretty much accepted that the gut microbiome is the seat of good health, it’s going to be the individualized health approach that evolves from this that is going to be fascinating to watch unfold. No doubt there will be snake oil, but there will also be some nuggets in there. Until that day comes, Dr. Brown’s AP is the best hope yet for treating scleroderma and, along with probiotics, meets some of the key criteria of this new study in terms of lowering pathogenic gut bacteria populations and replenishing with the good (in addition to having some nice immune-modulating effects).

    Richie, I sent you a PM last week…did you catch it? Thx for sharing your thoughts.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #459554
    richie
    Participant

    HI MAZ –didnt receive your pm –sorry for the rant —In the last few weeks was in touch with about 3 or 4 folks from the past who had scleroderma -a common thread –all doing good –all are still taking 200 mg minocycline daily -this is from about 20 years to about 8 years !!!I have an acquaintance and his wife has scleroderma –Over a two year period its all down hill -heart and lungs now affected –he knows I have done well –his doctor dismisses it with “study showed not effective” Guess he meant the Mays study —now on cellcept and he knows of the eye issues —–She continues downhill –for whatever reason at this point he wont try to convince her to try antibiotic —I would be willing to bet if this trend continues -at some point minocycline would be tried out of desperation and most likely too late at that juncture –Keep up the great work that you do –it does save lives !!!!!!!!!!!!!!!!!!!!!!

    #459560
    Maz
    Keymaster

    Richie, I’ll re-send the PM. Was just looking for your feedback on something, if you don’t mind. Thanks.

    Gee – any chance your SD friends would come to the site and write their Stories for us? So easy to do now, just by clicking on this link and few lines/paragraphs will do. It stuns me that this site has been going since the early 2000s and between all the volunteers during these years we’ve collectively seen hundreds, if not thousands, of SD patients reach remission and yet there are only 26 testimonials???? RBF has been life-saving for folks and it’s just a means to provide hope and encouragement to newcomers and an opportunity to give back and pay it forward.

    Tell Us Your Story Submission Page

    It’s always so hard to hear stories like the one you shared of your friend’s wife. Thing is, we can’t and nor should we try to convince anyone of anything in this life…belief systems are funny things. AP isn’t a cult – it’s just a legit treatment option with donkey’s years of anecdotal patient accounts of success and, while there is a deluge of AP research for RA, SD remains an orphan disease. You know, I found one poorly conducted RA/tetracycline study (see below) that pretty much discounted AP (and Brown’s life’s work) for decades, too. We can but hope that one bright doc will re-write the one SD study that has done such a disservice to SD patients. Thank goodness for docs like Brown and Trentham who were mavericks in rheumatology and unafraid of the ridicule they encountered from their peers to ensure that this treatment was studied and given due credit.

    Check this out:

    Minocycline Treatment of Rheumatoid Arthritis. (Editorials) Ann Int Med, 1995, 122:2, 147-148.

    Harold E. Paulus, MD, at the University of California, Los Angeles, School of Medicine, reported that upon reviewing a number of successful trials (open trials, as well as, MIRA, Kloppenburg/Netherlands studies) of minocycline as a treatment for rheumatoid arthritis (RA) in addition to the past successes of Dr. Thomas McPherson Brown (in a retrospective cohort study of 98 patients) and an earlier study by Sanchez (1968), these successes were largely discounted due to one study conducted in 1971. In the latter study, a placebo-controlled group of 30 RA patients who were randomly assigned to take either a placebo or one dose of tetracycline (250mg) per day for one year, failed to exhibit any notable benefits from the antibiotic.

    Tetracycline is the oldest in this class of bacteriostatic antibiotics and, having inferior tissue penetration, Dr. Brown found that higher doses (titrated to patient tolerance) were required to achieve the same results as those seen with either minocycline or doxycycline (see final notes in Dr. Brown documentary).

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

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