August 20, 2017 at 8:37 am #460483PinkmothParticipant
Friday August 18th I posted here for help beginning my AP journey.
I had started minocycline 100mg 2x daily on wednesday August 16th. I was prepared to wait a long time to see any effects. It is only august 20th But I see them already!!!!
My symptoms had progressed to the point that my skin on my neck and face had just begun to tighten when I began taking the mino. Last night August 19th I noticed significant slackening. It is back to normal.
The burning in my hands and feet got progressively milder but now for long periods will completely cease. Except last night when I was about 6 hours from my last mino dose, I could feel the burning and shrinking creeping back. After taking my next mino dose, the burning has stopped again.
The calcium spur that had appeared on my wrist at the onset of my problems is also almost entirely disappeared. I dont know if my body re-absorbed it or what?? But I noticed it shrinking over the last couple days and now it’s gone.
Ive also been on an elimination diet, and havent been consuming sugar (even simple sugar) or gluten for a few days.
As someone who is a severe skeptic of everything, I never thought I’d find myself in a position to be trying an “alternative” medical treatment of any kind. Im also a pessimist and expected that even if AP worked for some people, it would not work for me. Frankly I am astonished at these results so far. I am so happy I could cry. I don’t know what would have happened if it weren’t for the road back foundation.
I feel like I’m not quite out of the woods though. Like I said, I feel the burning and tightening when it’s been a long time between the mino 100mg doses.
At this point do you think I should stay the course for a while with the 100mg 2x daily even if there is flaring in between?
Since I’m noticing improvement just on the mino and diet, should I still get Clindy IV treatments next week or should I wait a week? Ive been digging through posts on this forum trying to figure out what exactly the clindy IV contributes to treatment. Can anyone clarify?
My first appointment with a rheumatologist is on tuesday. Are there specific mycoplasma blood tests they could order? In other words, how do we isolate exactly what organisms are causing the underlying problem?
Im going to order the comprehensive lyme tests from Igenex.
I have also ordered Henry Scammell’s book on scleroderma and AP.
THANK YOU ALL SO MUCH. I hope I hear from you.August 20, 2017 at 11:42 am #460484MazKeymaster
One of the uses of minocycline for SD is to treat calcinosis, likely due to its chelative (binds to minerals in the body, like calcium) and other properties. Have you had a chance to look at the SD research yet? This is one section of research describing this:
Hope this helps.
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.August 20, 2017 at 6:00 pm #460485Kat0605Participant
I started minocycline on July 12th and noticed that Ll of my skin tightening had ceased within a couple weeks. I had also been on Azithromycin since April. My symptoms started in full force in September 2016.
I was a huge skeptic too, but I cannot deny that minocycline has definitely helped me. I still have minor joint pain, muscle weakness, numbness and tingling, scalp pain and other symptoms that come and go, but overall I have a feeling of optimism and well-being that I didn’t have before. I honestly think starting AP before symptoms worsen is key! I’m living my life fully again which I hadn’t for almost a year. Life is good. I hope this continues!
Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, aziAugust 21, 2017 at 10:18 pm #460500richieParticipant
Patience –there are no miracles –its a long term approach but it works much more often than not
You must be logged in to reply to this topic.