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This topic contains 11 replies, has 5 voices, and was last updated by  TrustingGod 3 months, 3 weeks ago.

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  • #461292
    TrustingGod
    Participant

    I am a 20 year RA warrior and I am in remssion thanks to the antibiotic protocol. I am grateful to Dr. Brown for his life’s work. I would like to become pregnant and I am having a hard time finding an acceptable strategy for managing the RA during pregnancy. I have spoken to several rheumatologists and even a fetal medicine doctor. They don’t agree with one another regarding the use of biologics during pregnancy (fetal medicine doctor doesn’t approve of biologics), but they all agree that I can’t take minocin. I have to take something. I am ccp positive and rheumatoid factor positive. Thus, I am less likely to go into remission during pregnancy. Based on past trial and error, the RA returns within 30 days of coming off minocin and plaquenil is not effective. I have not found clindamycin beneficial. I need any guidance or help that you may be able to provide. I am willing to travel to see another doctor.
    Kindest regards and keep the faith!

    #461295
    Maz
    Keymaster

    Hi Trusting God,

    How great to hear that AP has brought you RA remission and, yes, your docs are right about not being able to take mino during pregnancy or while breast-feeding. However, there are some great antibiotic alternatives that are safe during pregnancy which can help to offset the risk of any major flaring post-partum. There have been a few young Moms who have passed through here and one current member, Kat0605, has been very kind to say she’d be happy to offer support and share what she knows and has done during her pregnancy with any other pregnant Moms here. I am sure that when she sees your discussion thread, she will chime in or you can try private messaging her. She’s a busy new Mom, so may not check in every day.

    There are also some good AP docs who can assist during pregnancy and, as you are able to travel, I’d be happy to share these with you in a private message, if you let me know your state.

    Just wondering, have you considered sharing your remission story with the foundation? We’d love to add it to the others, if you have a moment to jot down your journey. Here is the link for you to fill out the story submission form:

    http://www.roadback.org/tell-us-your-story/

    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.

    #461305
    PhilC
    Participant

    Hi,

    Of the antibiotics commonly used to treat rheumatic diseases, these are considered safe to use during pregnancy: azithromycin, erythromycin, and roxithromycin.

    Note: I am not a medical doctor. The above information is the result of spending several hours examining the relevant scientific research that has been published in medical journals.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #461308
    TrustingGod
    Participant

    Hello,

    Thank you for your replies. I would love the list of other AP doctors. I am in the Washington, DC area. I hope to hear from Kat0605. I will definitely share my story.

    Wishing each of you peace and blessings.

    #461309
    Maz
    Keymaster

    Hi TG,

    I’ve sent you a private message (PM) with a selection of docs who may be able to help during pregnancy.

    I also hope Kat will check in shortly to make a connection with you! If you private message her, she will receive an automated email to notify her of your message, so it might be quicker to try connecting that way.

    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.

    #461337
    Spiffy1
    Moderator

    Maz, she could go to my doctor. He has helped me so much. I hope it would not be too far. There maybe a good one closer to her.

    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

    #461341
    Maz
    Keymaster

    Maz, she could go to my doctor. He has helped me so much. I hope it would not be too far. There maybe a good one closer to her.

    Good news, Spiffy! Your doc was included in one of the lists sent to Trusting God!

    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.

    #461351
    PhilC
    Participant

    Of the antibiotics commonly used to treat rheumatic diseases, these are considered safe to use during pregnancy: azithromycin, erythromycin, and roxithromycin.

    By the way, of those three antibiotics, I would be inclined to choose erythromycin. It’s an older antibiotic with a longer history of safety, and there was some fairly recent research showing that bacterial resistance is more likely to occur with azithromycin than with erythromycin or clarithromycin. As for roxithromycin, that antibiotic is not available in the U.S.

    Nowadays doctors are probably prescribing clarithromycin more often than the older erythromycin. However, clarithromycin is definitely not safe to use during pregnancy.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #461354
    Spiffy1
    Moderator

    Thank you, Maz. I do think so much of him and have sent several people to him. He is such a great listener and allows patients to help themselves and listen to their own bodies.

    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

    #461383
    Kat0605
    Participant

    Hi- I am sorry that it’s taken me so lon to respond. We just moved into a new house and then I got the flu. It’s a busy time around here.

    Hi TrustingGod, I will respond to your PM- but I thought that I would post here to so that all can read. I started having autoimmune symptons in Septemeber 2016 after 2 traumatic miscarriages. I got pregnant again and my symptoms worsened. After a lot of internet research, I found this site. In my third trimester, I visited a Lyme Dr who diagnosed me with Lyme and I started 2 pregnancy-safe anti-biotics- Ceftin and Azithromycin. I took these until my daughter was born. I definitely herxed the first couple months and after giving birth, but after I started on minocycline at 3 weeks postpartum, I started getting better faster. I am now 95% back to normal and considering a 2nd baby. If I do get pregnant again, I will probably go back on azithromycin and ceftin. I wasn’t able to breastfeed, which I deeply regret, but I made the decision to treat with minocycline and share night time feedings with my husband and get sleep. I am a big a believer that prioritizing sleep was a huge factor in my recovery as during my pregnancy I suffered SEVERE insomnia, average about 4 hours a night and sometimes not sleeping at all for days at a time. It was awful.

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #461384
    Spiffy1
    Moderator

    TrustingGod I am so sorry I just saw your private message. Just out of curiousity I checked my message box. It used to alert me when I had a message but it does not seem to anymore. I am sorry I made you and several others wait for a reply. From now on I will just always check.

    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

    #461392
    TrustingGod
    Participant

    Thank you for sharing this information.

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