Home Forums General Discussion SAPHO Syndrome. Recently diagnosed.

This topic contains 4 replies, has 3 voices, and was last updated by  Kathy Taft Boyden 8 months, 3 weeks ago.

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  • #461553
    Kathy Taft Boyden
    Participant

    Hi Everyone,

    I have recently been diagnosed with SAPHO syndrome after a few years of misery! 3 bone biopsies on my spine, one of which grew out p.acnes. I have also been diagnosed with LD last spring and was on doxy. 100 mg. twice daily for 3 months. I got much better during this time, but went downhill again in the fall, but not back to my worst place. I should also say that I have had positive IGG, IGM for mycoplasma pneumonae and was on 3 months azithromycin for this, 2x per week. This was one year before LD diagnosis. I am desperate to connect with folks here who have also been diagnosed with SAPHO and have done AP for this. I am not interested in meds prescribed by the rheumatologist. Please, anyone who can help, write in. I have read “The New Arthritis Breakthrough” which convinced me that I need more longterm ABX for a cure. Also, http://www.immed.org, the website of Dr. Garth Nicholson, has been amazing for learning more about infectious cause of autoimmune illness. Best, Kathy

    #461556
    Spiffy1
    Moderator

    It sounds like you have come to the right place! Welcome! You will find a lot of knowledgeable patients just like yourself that can share what they have learned with you. It sounds to me like you are very educated about these bacterias yourself. I am not familiar with SAPHO but I know someone will get back to you soon that has experienced it or knows more about it!

    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

    #461557
    Spiffy1
    Moderator

    I saw where one study was done giving SAPHO patients clindamycin for four to 8 months. They all achieved remission for several years. I am sure you have seen this study?

    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

    #461558
    PhilC
    Participant

    Hi Kathy,

    Three months of doxy will not cure Lyme disease. It will help, but doxy by itself is not a cure. Ideally, you should seek out an LLMD for treatment.

    Phil

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

    #461676
    Kathy Taft Boyden
    Participant

    FOR ANYONE INTERESTED. I have been out to see Dr.F in Riverside, a rheumatologist who does AP for autoimmune problems. All testing is not yet completed, but I have been prescribed Minocin 4x per week, twice daily and clindamycin daily. With the clindamycin, iv treatments would be preferable, but I shall have to see what I can arrange back here. I will report back once the doctor has all my test results in. When I saw the doctor last week, my inflammation markers were ESR 32 and HS CRP 29. I will go back in 6 months. I desperately hope this resolves my bone issues/inflammatio in the spine, hips, pelvis, sternoclavicular joints. We know proprionibacterium acnes was found in my thoracic spine from one of my biopsies, so this is why IV clindamycin is preferred over oral and why he has ordered two abx.

    Edit: Physician’s full name removed and replaced with initials as per our Forum Guidelines. Thank you for understanding.
    See here.

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