October 17, 2013 at 4:06 am #307867katerParticipant
Saw my rheumy today–he works at a prestigious hospital and teaches at Med school. He has always wanted me on mtx and plaquenil which I have refused. He has not liked my AP or my Lyme diagnosis. However, he now INSISTS 🙂 that I be on Mino and prescribes it, probably for life. I told him I am 90% better which he agreed with, and when I lamented not being able to shake the last few symptoms he said “but you are not worse? ? I have NEVER seen such a thing with Minocycline and will be sure to remember this for the next person with SD”. Well how amazing is that? Of course he only admits to the mino being a DMARD not an anti-infection agent and does not agree with the other antibiotics or IV’s. Still, it is exciting progress so I thought I would share. The next person that walks through his door will not have to fight so hard :’)
Thank you roadback friends!
ps–my dear daughter is still struggling with her health–when she googled chlorella and charcoal for detox the first hit she got was my post about her on Roadback. That made her smile. She is seeing an amazing functional medicine doc and still searching for answers–still questioning Lyme and porphyria. I hope we can find some answers–she suffers more than I do ==which makes me suffer as all parents will understand.
Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, COctober 17, 2013 at 4:36 am #370197lynnie_sydneyParticipant
Great news Kate!
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +October 17, 2013 at 10:13 am #370198enzedParticipant
I would call that a major victory! 😀October 17, 2013 at 2:11 pm #370199Cheryl FKeymaster
Wow kater that is a BIG VICTORY! It literally made me feel physically better reading your post.
I know what you meaning saying your daughter’s suffering causes you to suffer as well. My daughter got better and I got sick and still struggle while she has resumed her full and active life.
I am glad to hear you are doing better and that this evidence in from if your doctors own eyes has softened his prior position.
CherylOctober 17, 2013 at 4:32 pm #370200k-leighParticipant
Ya! You rock woman! You are a trailblazer for the next sd patient to come through his door. Saying a prayer for your daughter.
Hugs.October 18, 2013 at 12:28 am #370201KrysParticipant
Wow!!! You’ve done an amazing thing! What an achievement!
May it have a snowballing effect!
And I’m very sorry about your daughter, Kate. May she find her roadback to vibrant health soon.
Warm wishes, Krys
You must be logged in to reply to this topic.