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Viewing 15 posts - 1 through 15 (of 109 total)
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  • #461210
    Airen
    Participant

    Good morning all, I just got my CBC results back Tuesday. WBC did go back up after a 12 day washout. This was the response from my dr:

    Got your Labs back and WBC went up to 4.0 off the minocycline. I feel OK with the slightly low WBC count on the minocycline because most RA drugs do this and that is why you tell them to be careful about being around sick people because you are immunosuppressed. I am ok if you restart. We can monitor your CBC every 3 months if you would like.

    I started back on the mino. Why are some drs so cautious about going back to mino? Is it dangerous for your wbc to go down like this? Is it dangerous to continue on mino when your WBC is reacting this way. My RF is “undetectable” and even my anti ccp is going down now! I would hate to stop this trend! Should I just lower my dosage?

    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

    #461190
    Airen
    Participant

    I had a root canal tooth pulled and paid $500 for a bridge. I couldn’t afford the implant. Luckily the tooth was far in the back of my mouth so no one could ever see. I have not used the bridge once so it was a complete waste. I did already have RA at this point but had not begun AP yet. I was happy to get rid of the infected tooth in case it was a source of my RA. It did not make any pain go away by removing the tooth. If I had to have one pulled that was more visible I would have considered an implant but a bridge is so much less expensive. So sorry you are worried. Good luck.

    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

    #461158
    Airen
    Participant

    Thank you all for the response. I also have had low WBC and neutrophils. Dr said I can try a washout for a week and retest. Are there any health risks with stopping mino so abruptly? So nervous about symptoms returning.

    Dr said RF was actually undetectable! Is that possible? Instead of showing a number result to compare to the reference range it just said <14.

    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

    #461091
    Airen
    Participant

    This is wonderful news! SO happy for you both. I wonder where this type of treatment is available in the states? I know Dr. Rowan does ozone therapy in California.

    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

    #461049
    Airen
    Participant

    This is just too weird. I just got my lab results back today and they too show low WBC and neutrophils. Dr said it is probably just my body trying to fight something off but I still can’t help but worry some. I’ve been taking 100 mg mino twice daily for 1.5 years or so now and doing really well. My RF was 11 back in April. Waiting on labs for a more current number. I would also like to know if anyone has heard of this and what it could mean.

    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

    #460823
    Airen
    Participant

    Okay, just ordered Dr. Axe’s brand SBO probiotic. I have an app on my computer that searches the net for coupon codes. GET THIS it found a code where I got the bottle FOR FREE!!! I only had to pay $4.68 for shipping!!! If you want to try Dr. Axe’s SBO probiotic for free here is the code ANORGANICALLYSPOOKYOCTOBER2017 to use at checkout. AND he offers a 60 day 100% money back guarantee.

    https://store.draxe.com/products/sbo-probiotic?gclid=CjwKEAjwvOzOBRDG95DXw43t8V0SJACAo8aHpGZpjpj081A24HaUDn447YKyyjdVxvwT7g3RdfoKkhoCUgPw_wcB

    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

    #460822
    Airen
    Participant

    Lynne,

    From your first link above you can order the mega for $60 instead of the link you shared second for $65.

    Do you follow Dr. Axe? I am off facebook because it was too much negativity for my mental wellbeing but I do enjoy Instagram. I follow him there and I receive his emails. When I googled “Megasporebiotic reviews” a link to Dr. Axe’s new probiotic came up and it looks like he has one too. Looks like soil-based probiotics will be the next big thing?? I think this is exciting and I will definitely try the mega and maybe even Dr. Axe’s too! Thanks for sharing. I would love to hear the long-timers thoughts too!

    https://store.draxe.com/products/sbo-probiotic/?variant=18319927237&gclid=Cj0KCQjwvOzOBRDGARIsAICjxoeYkmMOqCGOArdr_WqVLJ-hYkkEqp_YQwPQF33GS1lMU7JZw8l9NpQaAikrEALw_wcB

    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

    #460820
    Airen
    Participant

    Lynne,

    I have been looking for the best probiotic myself from the beginning of this mess I’m in and still don’t feel like I’m getting what I’m supposed to out of it! Used several of the brands they mention in this article. VERY interesting and intriguing…just might have to try this too. I sent an email to them for the info to give to my dr.

    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

    #460260
    Airen
    Participant

    Wow! VERY interesting! I have wanted to do this too. Did you do just the ancestry one or the ancestry/health combo? I am interested in both for my whole family. BUT it isn’t cheap!

    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

    #459134
    Airen
    Participant

    Hi Aynur!

    So glad you stopped in to share your story. I have RA and too have done well on AP in just 1.5 years on this treatment. I love success stories. Even though I have read them all, I still go back and reread from time to time. So happy for you!!

    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

    #459072
    Airen
    Participant

    I have heard many success stories with juicing and eating a light diet like this. BUT I tell you what juicing is a PITA! So much prep and clean up. I bought a juicer hoping it would cure me but after all that work I just couldn’t keep up. Maybe I should pull it out of the closet and give it a go again…now that I am feeling better from AP.

    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

    #459071
    Airen
    Participant

    Hi Kat,

    I have RA so we may not have similar experiences. When I started AP I herxed for several months. The first 6 months were pure hell. I did have some good days and some small yet noticeable improvements. I too was on a very strict elimination diet at the time and I feel like my body was also detoxing all that junk out of my system. I was dizzy light headed nauseous, increased pain, depression, feeling like this treatment wasn’t going to work. All the while working full time with two young children. I had a significant turn around after the 6 month mark. I’m sure your situation will be different since you have SD and not RA but what you’re experiencing sure seems to be a herx. I’m now almost two years on AP and just about in remission…my RF is in the “negative” range which is below 14, but I’d like it lower. Good luck and stay strong. If you notice small improvements now then I would take that as a good sign!! There are so many amazingly informed fellow patients on this board so I’m sure someone else will chime in too.

    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

    #458623
    Airen
    Participant

    Hi Maz, thanks for your reply. I’m always interested in your insight and others who have been here a long time. So, would you recommend asking about trying the penicillin? Was it beneficial to you? Other than bringing those anti CCP numbers down, did it make you feel better? Does it stay that way or is it an ongoing battle to keep these numbers down after they reach normal range? Is it safe to take the penicillin long term, over several months? What kind of side effects or possible risks are there? What would happen if I chose not to address the anti CCP with penicillin? Does mino help these numbers, just at a slower rate?

    Thanks so much!

    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

    #458613
    Airen
    Participant

    Thanks for commenting Jas. I agree, I do need to focus on the good but I also want to me sure there isn’t something else I need to think about or work on. I am mostly feeling quite well. How are you feeling?

    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

    #458488
    Airen
    Participant

    Thanks all. I will try adding in some vitamin C and lather in lemon 😉 to see if these help.

    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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