Home Forums General Discussion WHO HAS AP DOCTORS & WHERE?

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  • #463443
    April15533
    Participant

    I have called several around me, but it would be nice to hear where people are and what doctors they are using. Any takers?

    #463451
    Pinkmoth
    Keymaster

    Hi April,
    What state are you in? Then maybe someone from your state could chime in. I’m assuming you used the road back automated doctor list to find the names of the AP doctors you called?

    Ill drop a reminder here to any potential responders to this post that doctors names should be abbreviated to the first initial when discussing publicly. Feel free to share full names in private exchanges.

    Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
    Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
    Meds: minocycline (Zydus generic) 100mg 1x daily,
    Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

    #463460
    April15533
    Participant

    Bedford, PA. The Dr office here did offer iv therapy up until recently. Now we aren’t sure…. I got to do something before the symptoms progress more. Start early, attack hard

    #463461
    April15533
    Participant

    I knew several years ago that something wasn’t right. I kept getting nauseous for no reason. Lots of systemic pain all over. Extremely hot al ot. Thought it was menopause, but it was so extreme, it seemed odd. Feet burning hot. Sure there was more, but it felt something was going on with my body. Did have a couple strange bugs in past 20 yrs that went undiagnosed.

    #463474
    bonnielou
    Keymaster

    Hi April — well, you are a long way from me (Chicago) but I see an AP doctor here. Lyme is really her specialty, but she definitely supports the use of antibiotics for RA, which is my disease. Dr. K is a functional/integrative physician, and I also see a rheumatologist who is okay with writing the minocycline prescription, but doesn’t have any expertise/belief in the value. It’s been working for 11 years though. Hope you get someone to help you soon.

    Bonnie

    Bonnie Lou
    RA 02/07,AP 10/07
    Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
    Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

    #463490
    April15533
    Participant

    Thanks Bonnielou for the input. Still no luck here in my area. I will probably have to relocate someplace warm and has the IV treatment.

    #463593
    luislien430
    Participant

    I am experiencing similar outcome for Northern Virginia, got the list for my location but phone calls went unanswered, current doctors (rheumatologist and internal medicine) are not cooperating , the first one scolded me for even suggesting and pretty much asked me to get another doctor and the second one seems afraid to try it. So disappointing. In the meantime swollen fingers, toes and rolling joint pains. Using Meloxicam minimal doses (up to 7.5mgX2/day) to be able to function and when no other option then prednisone (up to 2X5MG). Not sure how to proceed.

    #463601
    Pinkmoth
    Keymaster

    Luis,
    That’s very frustrating. Is traveling to an AP doctor that’s further away an option, since the first one isn’t answering your calls?

    Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
    Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
    Meds: minocycline (Zydus generic) 100mg 1x daily,
    Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

    #463602
    Maz
    Keymaster

    In addition to the suggestions above to travel further afield, which many do to seek a treatment of choice, it’s worth noting that RBF’s doc lists are peer-conpiled by fellow patients who volunteer to do this. So the lists are only as current as the feedback volunteers receive and we can only add docs when someone kindly tells us about one they are seeing who would help others. Many people can’t travel due to finances, family commitments, or illness, so searching locally for an integrative/holistic/functional med/Doctor of Osteopathy or naturopathic doc to help with the protocol is also an option. We are even occasionally lucky enough when these folks tell us about the doc they’ve found so we can add them to the list for others. In fact, this is why the Doctor packets were developed – to provide guidelines for treatment to new docs who want to help a rheumatic patient with AP.

    Have you tried approaching any local docs of the types mentioned above to help? It might save you a lot of money and travel angst to try this route.

    There are some terrific LLMDs too who also treat with antibiotics in the mid-Atlantic region and this kind of doc can usually help with infection testing and quite often will offer IV therapies.

    #463651
    mcellen111213
    Participant

    Hi April:
    I am at the end of the first week of treatment. I am in Lansing, MI. We live outside Chicago (around 3 1/2 from here) and are staying at an AirBnB near the Docs office.
    This doctor is extremely versed in the AP protocol as well as other alternative treatment plans. I think it’s important to find somebody who really knows what they are doing with this (just my opinion). This doctor did some work with Dr. Sinnott in Iowa and has been practicing for many years. I have met many of his patients this week being treated for various illnesses. They have all had very positive things to say about the doctor and about their progress. It is 5 days of IV and HBOT, two days off, then five more days of the same. Today, I feel that I might be having a “herx” reaction (weakness in my arms, general fatigue) but overall, I’ve been fine. I have Sjogren’s Syndrome and have been controlling it somewhat through diet and supplements since last June. Another friend here on Roadback had this treatment last summer and has had great success. She has really helped me through by texting and talking to me through and before the treatment. It helps to have an “AP buddy”! It might be worth the traveling if you can swing it. The treatment is around $2450.00 and our AirBNB is $45.00 per night. Insurance does not cover but we are going to try to tax deduct it next year.
    Feel free to PM me if you have any questions.
    Ellen

    #463652
    whaleharbor
    Keymaster

    I second what Maz said. I ended up going to my local and long-time rheumy…who consulted with an AP doctor who has since retired. So…you might have to make the trip once to an AP doctor…but they may be more than willing to share their knowledge with a local doctor who can help you day to day etc…

    100 mg Minocycline every other day (Actavis Brand)

    #463742
    luislien430
    Participant

    Hello Pinkmoth, absolutely , currently trying to find a doctor here in Brooklyn, New York, any additional information will be greatly appreciated .

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