Home › Forums › General Discussion › Diffuse, Ap and supplements
- This topic has 7 replies, 5 voices, and was last updated 6 years ago by laurieah.
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March 12, 2018 at 6:31 pm #461644laurieahParticipant
Hi, I have diffuse and starting ap. What dose is good to start out? Also what supplements do you recommend?
March 12, 2018 at 11:33 pm #461645MazKeymasterHi Laurieah,
You’ll find the method Dr. Trentham used for starting minocycline for Diffuse SD at the link below. As most SDers want to treat as aggressively as possible to slow down the SD freight train, aiming for the Harvard Protocol (100mg twice daily) is the goal, but starting on just 100mg daily (or 50mg twice daily) for the first month, as mino can lead to some early dizziness until the body adjusts, is generally what Trentham advised. Also, to ensure one is taking a good quality probiotic in adequate quantity to preserve gut health.
Minocycline in Early Diffuse Scleroderma
All the best as you begin your road back!
March 13, 2018 at 12:51 am #461646laurieahParticipantThank you so much Maz.
March 20, 2018 at 1:28 pm #461686MarlaCLParticipanthi
Does anybody take 2 mino at the same time? Im not feeling any real benefits yet . Its only 2 months that I have acheived the full protocol Shortness of breath seems worse but it seems to be coming from diaphragm breathing,,,,,,,can’t say I have felt this way before……Sometimes i wonder with Scleroderma and slow digestion if the capsules of the supplements( I sure take a lot) are just blocking me…….any comments would be appreciated
THANK YOUMarch 21, 2018 at 5:56 pm #461689richieParticipantit is better to take one in the morning and one later on –have you had a PFT ??
March 21, 2018 at 7:00 pm #461690MarlaCLParticipantHi Ritchie
I have lung fibrosis and did my bi annual pft today. Dissapointed with result. I went down to 44%. Last March I was at 42% and Sept 2017 with just a small dose of mino 500 mg a week I went up to 47%. I also take 1500mg cellcept. I feel I’ve hit a wAll or need to be more patient. On 1400 mg since Feb 1 2018. I’m gf df and sf and now grain free. Any suggestions would be hugely appreciated. I take NAC and many other supplements
Thank youMarch 23, 2018 at 10:53 pm #461710PinkmothKeymasterHi,
Bovine colostrum has been very helpful for me. I just started digestive enzymes also.
I can eat just about everything now except still not certain forms of starch. Whole wheat flour or whole corn flour isn’t a problem but white flour is, as well as cornstarch and baking powder (weird).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, biocidinMarch 24, 2018 at 12:35 am #461711laurieahParticipantThank you pinkmouth
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