Home Forums General Discussion AP Doc scerloderma NJ/Philly/NY area

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This topic contains 6 replies, has 4 voices, and was last updated by  Maz 1 week, 1 day ago.

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  • #461522
    cdannunzio
    Participant

    Looking for experienced docs treating patients with scleroderma with AP in the NY, NJ, Philadelphia region. Original list I received was touch and go. Please provide reliable experienced doctors. Thank you!

    #461526
    Maz
    Keymaster

    Hi cdannunzio,

    Not sure what you mean by “touch and go?” Many of the docs who provide AP are alternative (integrative, holistic, functional med) type docs, because AP isn’t a standard of care treatment for SD. There is one rheumy at Hosp for Special Surgery, but I think he’s just seeing RA patients now and close to retirement, but you could check to see if he’d see a SD patient. If, however, you want IV clindamycin in addition to oral minocycline, then you’d like need to go to see the doc in Bedford, PA. NJ has a real dearth of any good AP docs.

    The newly listed dermatologist in NYC may make a good option for SD patients or anyone with rheumatic skin manifestations. He’s been working with a severe dermatomyositis patient and got her into remission within a year. He is also able to work with a compounding pharmacist to re-create the pelleted brand Minocin that is no longer available.

    There are also Lyme Literate MD lists of docs who also use antibiotic therapy, more to select from in all these states, but you’d likely need to have had a history of Lyme or other tickborne infections or suspect infection.

    Can you describe a bit more what you’re looking for in an AP doc and maybe we can put our heads together on this to find a suitable match?

    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.

    #463446
    April15533
    Participant

    So Maz, IS there a different list of LLMD than the state list i have requested? The few places i called in PA either phone doesnt work, or the person left the practice.

    #463452
    April15533
    Participant

    So FYI, the Dr office in Bedford PA is in transition right now. Not sure if or when the IV treatment will begin again. That is why I am still calling and looking around for others.

    #463453
    April15533
    Participant

    Did you find a Dr yet? If so, can you tell me where? I am still looking since the Dr in Bedford in in flux now

    #463455
    Lynne G.SD
    Participant

    Hi April;
    LLMD s are the AP gurus,most of them use multiple antibiotcs for Lyme.If you can find one grab him quickly.If you are sure you don’t have Lyme you can always fib a bit and say you got a bite long ago.
    As for clindamycin i found the oral to work as well as the I.V s since I used both.

    #463456
    Maz
    Keymaster

    So Maz, IS there a different list of LLMD than the state list i have requested? The few places i called in PA either phone doesnt work, or the person left the practice.

    Yes, just go to Doctor Search Page (under Resources tab above), read the instructions for use of the automated system, then at the bottom you just select LLMDs in US. You can choose up to 3 doc lists and there is a very healthy “most experienced” LLMD list. Good luck!

    Can you jot a note to admin@roadback.org email to let us know which AP docs you were having trouble connecting with? Feedback is how volunteers keep the doc lists current, so very important to the foundation and other patients. Thanks!

    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.

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