Home Forums General Discussion 89 in Jan, 39 in April, 25 in July – RF GOING DOWN!

This topic contains 12 replies, has 6 voices, and was last updated by  Airen 1 year, 4 months ago.

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  • #456209
    Airen
    Participant

    Good morning all,

    I wanted to post my recent labs taken. My rheumatoid factor was 89 in January, 39 in April and I just found out this morning that my RF is DOWN TO 25 now in July. I am extremely excited and happy that I am REALLY, FOR REAL on my way to REMISSION!!!! I have been on AP for 1 year now. Started at 100 mg MWF and have slowly increased to 100 mg twice daily.

    I have also recently had a stool test done and these are the results:

    Elevated fecal secretory IgA
    Elevated pathogenic bacteria overgrowth (dysbiosis), especially Klebsiella and Citrobacter, which are linked to inflammatory arthritis.
    Low short chain fatty acids
    Low probiotic status
    Digestion and Absorption: adequate
    Inflammatory gut markers: negative
    Allergy gut markers: negative (no signs of major food allergies)
    Yeast, parasites: negative
    Leaky gut: very likely based on this test and the level of infection.

    Recommendations:
    – Berberine Complex by Integrative Therapeutics (to kill the Klebsiella/Citrobacter)– 2 caps three times a day away from food for 2 weeks. Then switch to:
    – Uva Ursi Max by Douglas Labs (to kill the Klebsiella/Citrobacter) – 2 caps twice a day for 2 weeks. Discontinue if nausea, vomiting, rash, ringing in the ears occurs.
    – Klaire Detox Probiotic – 2 caps per day to achieve the right flora that have been shown to reduce disease activity in RA patients. Take with meals and try to separate from the Berberine or Uva Ursi by an hour or so.
    – If “die off” occurs (feeling worse joint pain, fatigue) – take 1,000mg of vitamin C every couple of hours for a few days and Epsom salt baths.
    – If no change in symptoms after 4 weeks, do another 4 weeks rotation of the products and add “GI Revive” by Designs for Health – 1 tsp twice a day. I will send you a Rx for this product but only order it if there is no improvement in 4 weeks.

    I plan on taking these results with me to my dr appt on Wednesday to get her approval of the above treatment plan. What are your thoughts on my stool results and recommended treatment?? Had me a little worried and concerned.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 37 mcgms synthroid 6 am, 4 advil 7 am, 100 mg mino 9 am, 3.5 mg prednisone 11 am, 4 caps of Fiber Smart probiotics, B Complex for MTHFR mutation, 240 mgs Magnesium (a few days a week, gives me night sweats) all at 6 pm, 100 mgs mino 9 pm

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #456211
    Nikkoal
    Participant

    Airen,

    That is great that your numbers are going down. Are you feeling improvement in symptoms? Interesting on the fecal test results. I know we are all different, but that is useful information on probiotics that can help kill off the bacteria that is seen in rheumatic patients.

    #456213
    Airen
    Participant

    I am definitely feeling a major improvement in symptoms. I am not completely pain free but I am able to completely live my life…unlike 6 months and 12 months ago. I wake with a little pain maybe 1, 2 or 3 and then quickly 1-2 hours I feel just fine. I still “feel” the RA but am not in a lot of pain at all. Nothing like before when I was in constant pain all over all day long and could barely live my life. I am in a much better place and hope to continue to improve and heal from this horrible nightmare.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #456215
    Spiffy
    Participant

    YOU HAVE MADE MY DAY! Congratulations! That is such great news! I have been on berberine for 6 months….4 a day. I wonder if I should rotate. This is so interesting. A great side effect is healthy blood sugar. It will not go too low…only if you need it! I am feeling really pretty well, too. But, just as you said, I know it is still there. To tell you the truth, I am going to be nervous for my labs in September. Mine was 28 at Acculab and 34 at Quest. Do you use Quest? What company did your stool analysis. Thank you so much for posting your results and protocol with us!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #456216
    lynnie_sydney
    Keymaster

    Airen – Great news on your labs!

    I also think the stool tests and results are potentially exciting as another piece of the puzzle. There is just so much recent research into the gut microbiome and how it affects/contributes to/causes so many disease states, including RA. It’s really only been getting any scientific attention since around 2008. There are about 3 pages of discussion on this topic if you type microbiome into the search box top right of first page of General Discussion.

    Am not sure who you are consulting doctor wise for your AP treatment approach. Many docs are not yet across addressing the gut as part of any treatment approach (takes a very long time for research to translate into practice), so you may need to take these complementary treatment decisions without him/her. I don’t personally have any experience with these recommended products but do know that Integrative Therapeutics is a well regarded company by an integrative doc I consult.

    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

    #456218
    Airen
    Participant

    @spiffy The stool test was facilitated by a functional dr in CT. I am not in CT but she sent me the test for free and I shipped it to Genova. Genova labs did the test and sent the results to her. My insurance covered the test but I did have to pay $129 out of pocket and $65 for her to “interpret” the test and make a treatment protocol based on the results. I am happy to share her info. Am I allowed to share here? Or should I private message you?

    Ordered all her suggested products today. I will let you know how I’m doing after 4 weeks!

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #456220
    Maz
    Keymaster

    Hi Airen,

    Would you kindly PM me this doc’s name and contact info? I’ll check if she’s on the AP doc or LLMD list for you.

    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.

    #456223
    Airen
    Participant

    Sent Maz! What are your thoughts on my results and stool test and suggested additional treatment plan?? I value your opinion.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #456225
    Spiffy
    Participant

    I have looked up the Genova test. My integrative doc could order that for me. I may also want the name of this doc in CT if you do not mind. Thank you. Please keep us posted the next 4 weeks. Again, congratulations!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #456226
    Airen
    Participant

    @spiffy Sending you a PM.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #456229
    Spiffy
    Participant

    This group looks fabulous. I always wonder why Baltimore is such a dry spot when it comes to naturopathic rheumatology. I guess we are so surrounded by conventional medicine it is hard to think outside the box. If anyone knows of a great doc or clinic in my area like the one above I would love a private message. Don’t get me wrong….I love Dr. W. He is wonderful, but a second look never is a bad idea.

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #456233
    Linda L
    Participant

    Airen,
    How long have you been on 3.5 mg Prednisone?
    Linda L

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia Very low iron Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Oroxine, Mobic, Panadol Osteo, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #456239
    Airen
    Participant

    Maybe 2 full weeks? I have been tapering slowly. I didn’t do well going from 4 to 3 so I went back on 4 for a week and then attempted 3.5 and am doing fine. I will stay on the 3.5 while I detox from this gut infection and then hopefully i will be feeling even better after 4 weeks of that treatment and will then attempt another drop in pred to 3 mg.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

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