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  • #467714
    Maz
    Keymaster

    Hi Alicia1,

    A PM has been sent with your requested doc lists. All the best in your search.

    #467689
    Maz
    Keymaster

    Hi aponce, a PM has been sent with the doc list you have requested.

    #467644
    Maz
    Keymaster

    Spiro, so kind of you to check in and provide your update! Hope your wife is doing well!

    #467639
    Maz
    Keymaster

    Hi Ellie,

    There is a very helpful website, called labtestsonline.org where you can type in various lab tests and learn what they mean.

    As far as I’m aware as just a fellow patient:

    MCV AB test is used to help diagnose RA when the Rheumatoid Factor is negative.

    VEGF is a test that might be tested to help determine the degree of blood vessel growth and possible vascular leakiness. Apparently, certain infections might cause it to be elevated, such as Bartonella Henselae, though it is used in other scenarios.

    Babesia Duncani WA1 is a tickborne parasite, a protozoan piroplasm. It’s a bit like malaria as it parasitizes red blood cells and can cause fevers and sweats, chills,joint and muscle pain, fatigue, anemia and breathlessness, etc. There are specific antibiotics used (often in combination) to treat it and treatment can be prolonged and cyclic due to the bug’s life cycle.

    Are you seeing a LLMD, Ellie?

    #467635
    Maz
    Keymaster

    Hi henryngny,

    Happy to send you the lists you’ve requested via the PM system. You will find this PM in your Profile inbox and, after it’s sent, should receive an automated email notification to let you know it’s there.

    #467627
    Maz
    Keymaster

    Hi Laura,

    Have sent you a PM with the lists you’ve requested. All the very best to you in your search.

    #467590
    Maz
    Keymaster

    Hi Hoften, the website was designed to offer info to both patients and doctors so there are lots of resources you can browse to decide what you’d like to share with your doctor.

    Most rheumies are aware of Minocycline as a disease-modifying anti-rheumatic drug (DMARD) for RA but may prefer to use other DMARDs or biologic disease modifiers. Minocycline is still listed by the American College of Rheumatology as a DMARD, so you might find that site’s fact sheet useful to print out, which you’ll find at the top of the Journal Article section on the site:

    ACR Minocycline Fact Sheet

    Most rheumies that prescribe mino will recommend the daily dosing schedule, which is described in the Daily Protocol (aka Harvard Protocol) Doctor Packet.

    #467588
    Maz
    Keymaster

    Hi Hotten,

    You’ll find the Doctor Packets in the site Resources Recommended Reading section, here:

    Pulsed and Daily Protocols

    If you haven’t found the FAQ section of the site yet, it’s very worth reading through them all. FAQ 15 may be relevant to your question.

    FAQs

    When Dr. Brown saw patients (as described in book and video in Resources section), patients often had long-standing disease and were treated as in-patients in his hospital so that Brown could tend to them should herxing arise. Those days are long gone and, unless a patient is working with an experienced AP doc who recommends IV clindamycin, oral therapy is started beforehand. It’s more a question of logistics now. As outlined in the Pulsed Protocol Doctor packet, the purpose of IV clindamycin is:

    Patients with severe or long-standing disease are started with a series of daily intravenous or intramuscular antibiotic treatments for a period ranging from one to three weeks. Clindamycin is given to eradicate long-standing L forms of bacteria resident in the gut, respiratory tract, genito-urinary tract and other areas to allow greater permeability of the tetracycline family of antibiotics and diminish the variables of disease. Clindamycin is concentrated in the phagosomes of the neutrophils, and therefore accumulates at the site of inflammation.

    #467587
    Maz
    Keymaster

    Glad you found it okay. There are helpful instructions on how to use the forum in the permanent threads at the top of the General Discussion area if you need a refresher at any time. With PMs, you should always get an automated email notification that you have a message in your profile inbox (unless you turn off that function), but sometimes these automated notifications wind up in junk mail so get missed.

    #467582
    Maz
    Keymaster

    Sorry to hear you had issues with the automated Doc Search system. Mostly, it works seemlessoy, but occasionally it doesn’t like some email servers or IP addresses. Happy to send you a list of AP docs in AZ through the PM system and hope one of the providers works for you.

    Interesting that your test came back with low butyrate – seems that RAers (and other rheumatic diseases) are low in these types of butyrate-producing, protective organisms, according to other research I’ve encountered.

    Will share the other info you asked about in a PM.

    #467580
    Maz
    Keymaster

    Hi Hotten,

    There are a few AP docs in AZ. Did you find the automated Doctor Search on this site? If not, click here:

    Doctor Search

    There are many ways to heal leaky gut, which seems to be a big player in rheumatic diseases. Are you working with an integrative or functional medicine doctor who can advise you on this? Integrative AP doctors are the ideal in this scenario.

    I have found that a Pre- Pro- and Post-biotic are very helpful, especially ones containing sodium butyrate, which is a short/chain fatty acid made by certain types of gut bacteria from fermented dietary fiber that helps restore the gut lining and to help reduce inflammation. You can research this and other suggestions to discuss with your new AP doc.

    Intestinal butyrate-metabolizing species contribute to autoantibody production and bone erosion in rheumatoid arthritis

    Another supp people find beneficial is l-glutamine and others have found a compounded med, called LDN, helpful. Bovine colostrum has properties that are helpful. Diet can be key for many. These are all things that can be researched over time and discussed with the doc. You can use the search box at the top of this forum, using key words, like “heal leaky gut,” to find past posts made by others and what has been found to be useful.

    Hope the above offers some pointers. We are just fellow patients here and unable to advise on anything, just to share what has helped us.

    All the best in your searches for the ideal AP doc for you!

    #467576
    Maz
    Keymaster

    Further to the above, here are JIA Stories on site to read:

    JIA stories

    One of the stories was written by Forum User, Evalon, if you’d like to try to private message her. Another forum participant who wrote a Story has user ID, Anonymous.

    #467575
    Maz
    Keymaster

    Hi Brandon, there have been a few parents who have posted here in the past and I will try to locate their user IDs so you can try to connect.

    The upside is that you’ve read the Henry Scammell book, The New Arthritis Breakthrough, so you’re au-fait with Dr. Brown’s chapter on individual dose titration (I.e., titrating to patient tolerance). Did you talk with Dr. S. about titrating your son’s dose?

    As described in the book and in the FAQ section of this site, a herxheimer is expected with AP and Brown had recommendations to manage things during this period.

    Presentation by Thomas McPherson Brown, M.D., “Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis

    Also, FAQs 20-26 may be relevant to read at this stage, though reading through them all can provide a good primer.

    Hope these resources help a bit and that others in your boat will chime in for support.

    #467539
    Maz
    Keymaster

    Hi Hopeful1,

    I have sent you a PM with the lists you requested. All the best finding the right doc for you!

    #467535
    Maz
    Keymaster

    I’ve sent you a PM with your requested lists. All the best in your search.

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