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  • #463994
    Luck20
    Participant

    I’m interested in learning about herbal antibiotics used to treat autoimmune diseases where an underlying lymes infection or coinfection is suspected. I’m swamped in books and online searches. I’ve also tried to search the message boards here.

    I’d love to hear about anyones experiences with these herbs:

    Teasel
    Grape Seed Extract
    Japanese Knotwood/Resveratrol
    Cryptolepsis
    Cats Claw
    Chinese Skullcap
    Serrapeptase
    Houttynia

    I’m very interested in safety of being used with autoimmune diseases. There seems to be some confusion over the effects of these herbs on the immune system and if their appropriate for everyone or not.

    Thanks!

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464011
    Violet
    Participant

    Hello Luck20–

    When I tried Cat’s Claw (in the form of samento) many years ago, I began having some tendon pain issues. Whether it was cause or correlation, I don’t know. This is a side effect also known to occur with the class of antibiotics called fluoroquinolones. I discontinued the Cat’s Claw quickly and was blessed that the tendon pain went away. I was also uncomfortable taking serrapeptase because of something I read about a particular person’s lung side effects (cannot locate that article now–again, it was many years ago). I have found it helpful to begin only one new thing at a time, so that if something changes (good or bad), I have good certainty as to what caused the change.

    I’m very much in favor of natural helps. I’ve had great results from a combination of Vitamin C, quercetin, and bromelain, which I buy individually. This formula was originally developed to help those with autoimmune illnesses by a company selling a commercial product called Mirac. Here’s a link to the site for it: https://www.miracimmunesupport.com/

    May you find just what you need to restore your wellness.

    Best wishes,
    Violet

    #464012
    Spiffy1
    Moderator

    I have used Berberine and Paractin and the Berberine did lower my blood sugar as a side effect which was fine but I took them both together and I do think it caused my blood pressure to bottom out. I have been a little leary of supplements since. I may would try Berberine or perhaps Paractin but would never take them together.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #464013
    Luck20
    Participant

    Thanks Spiffy1 and Violet for your replys. I so much agree about the need to be careful and introduce herbs one by one. Also, from what I read the synergy of combinations need to be carefully considered. I wish there were professionals to ask, but from what I read even the most experienced admit its careful trial and error and you need to trust yourself.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464014
    whaleharbor
    Keymaster

    I’m an RA patient and not a medical professional, so take this as you will. As for me, I’ve just “followed the yellow brick road.” Like literally I take minocycline (an amazingly low dose actually) and celebrex and that put me in remission after almost 2 decades of what my doctor described as “Severe RA.” In the beginning, I was already on prednisone as it was the only way I could exist…but slowly, slowly slowly tapered off under doctor’s supervision. So I’ve not ventured far from just what my first doctor (who was at the time the Head of Rheumatology, now retired) told me. He was not in favor of much else and voila, for me it worked. As far as “I wish there were more professionals to ask” you probably already know this but just to put it out there for the next person reading this thread that might not know. The Road Back Foundation doesn’t endorse any doctor…but there is a list of doctors maintained and updated based on patient feedback. It’s a starting point for finding the best professional for you. The doctor info request area can be found here —> https://www.roadback.org/resources/doctor-search/

    100 mg Minocycline every other day (Actavis Brand)

    #464015
    Luck20
    Participant

    Thanks for the reply whaleharbor. Yes, I keep reminding myself that people have gotten better only on the mino and I just need to ‘stay the course’ and it will all work out in the end. I just like having a back up plan and to research all my options to be prepared if I run into troubles later.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464019
    whaleharbor
    Keymaster

    Absolutely @Luck20! I agree and I would never ever ever tell anyone what they should do…how could I? I’m just a fellow patient myself and not a medical professional. I just put it out there in case anyone was wondering if anyone had gotten better on just mino (and an anti-inflammatory). So I just basically raised my hand and said…”welp” for me…this is what I did and this is what I experienced. You do you, Luck20 and I also welcome any and all research because the more we all know…the more we know…and the better we will all be. I never discount anything. Just wanted to put it out there that I never had to venture far into anything else – for me – for whatever that’s worth.

    100 mg Minocycline every other day (Actavis Brand)

    #464020
    Luck20
    Participant

    I’ve reread the books put out by The Road Back.Their very inspirational! But wow, those we’re simpler times… I wonder if people even had much access to probiotics in the ’80’s? I don’t remember them, but maybe I didn’t undestand what they were. Also, few would have understood the concept of gluten free of grain free! We definitely have more options.

    For me, I suspect some underlying co-infection and I’m trying to make sure I have some other complementary treatment options for down the road. I haven’t been tested for the co-infections, but I think its too late for accurate testing.

    I really appreciate hearing other people’s experiences. I’m very open minded and there are few things I consider too odd to consider. 🙂

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464021
    lemons
    Participant

    I tried Cats Claw and it made my symptoms worse.I came onto this site six years ago. I was very ill. One of the moderators called Lynnie suggested I excluded dairy from my diet. She also hinted that wine was also on the hit list. She wasn’t right about the wine (thank God) but she was spot on with the dairy.
    Over the years I’ve tinkered with so many supplements, too many. The only thing that got me better was Minocycline.
    I reached remission on that antibiotic within a year.
    The supplements I’ve carried on with are berberine, astaxanthin, vit D&K and lugols iodine and selenium.
    Everyone’s different, what may work for me, may not work for you. It takes time to determine what’s beneficial.
    N x

    #464022
    Luck20
    Participant

    Thanks for the reply lemons. A year for remission! Thats wonderful. I’m so happy it worked.

    Yes, cats claw is on my caution list. I think its listed as an immunomodulator and that makes me nervous. I read conflicting things about it for autoimmune diseases.

    Berberine sounded great, but after awhile I started noticing reflux after it and now its off the list and I feel better.

    I’m cutting down the dairy now. My sinuses started to act up again and if I stay away from it, I don’t get headaches. Its all trial and error. I can have it once or twice a week and be ok. Thats livable. 🙂

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464023
    lemons
    Participant

    My AP doctor also told me to quit dairy.If he’d said I needed to quit kale or carrots, that would’ve been great. But life’s full of hardship and disappointment……

    #464024
    lynnie_sydney
    Participant

    I tried Cats Claw and it made my symptoms worse.I came onto this site six years ago. I was very ill. One of the moderators called Lynnie suggested I excluded dairy from my diet. She also hinted that wine was also on the hit list. She wasn’t right about the wine (thank God) but she was spot on with the dairy.

    Hi Nancy – not on the Forum much these days, having retired from RB but I check in about once a week. I had to smile when I read this. The reason wine is implicated is because of the sulphites (terrible for everyone, but especially for those with chronic diseases). But Aussie wines are the worst for these – they are regarded as the “cleanest” wines in the world, but that is primarily due to the sulphites. I don’t drink red any more – absolutely doesn’t agree with my body. But I still drink white (New Zealand Sauvignon Blanc my first choice).Other than this, my diet is pretty clean and fresh. But you are so right. What is a trigger for one, is not for another. Our bodies are individualised, as are we. But there are certain things that are pretty bad for all.

    I am delighted about your remission on mino – that was my story too (symptom-wise, though not blood work). However, after 5 years I became hyper-sensitive to all the tetra drugs and had to find alternatives. I rotate those and most of the time I’m well. I do find that a flu might re-activate old infections and can cause me problems (lyme and co-infections n my background). But, after 30 years, I only have a little damage in one finger, have not taken any conventional RA drugs and most of the time I am well.

    I’ll raise a glass of SB to you tonight Nancy! Stay well

    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)

    #464025
    Spiffy1
    Moderator

    Ha ha! And I am about to have to have my A1C checked which most likely means I will be adding sugar to my ever increasing list. It has been a stressful year and sugar has held my hand. Ooooh, maybe I will be pleasantly surprised. Yes, we all have different triggers and it is a joy when you figure them out. For me I have no doubt that gluten and dairy were my main culprits because I will still break out in a rash if I get cross contaminated. So for me I don’t have to guess if diet helps which makes me stay very disciplined. If diet is not an issue for you be so thankful and grateful! I wish my diet did not matter. But I have also studied it enough to know that even if I did not react in a way that I could quantify I will never eat gluten or dairy again because of my MTHFR status. Those with this deficiency never do well on these two foods. But of course this only affects about forty percent of the population! Lucky ducks!

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #464026
    Luck20
    Participant

    Spiffy1, I hope sugar doesn’t turn out to be a problem for you. Its hard to 100% give up anything.

    Just doing my best is 85-90% on things. I’m not perfect. It really is tough trying to figure out triggers. Its drives me crazy. Also, my tolerance seems to vary. For a long time beans were causing inflammation and pain in my hands. Now I think I can tolerate some humus. Wouldn’t that be great?! But is it ALL beans or just chickpeas I’m tolerating? I don’t know…sometimes I get sick of trying to figure it out. I’ve done a bunch of detoxes and 3 months following the Alcot list of things to avoid. I keep reminding myself that getting stressed about food isn’t healthy either.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464027
    lynnie_sydney
    Participant

    Luck – it could be the sulphites in the beans, used as preservative when dried. A way to test this would be to try organic air-dried beans or drained canned ones – neither of which would have the sulphites.

    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)

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