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I'd like to share some GREAT NEWS and give encouragement to other SD patients considering AP – today marks 2 months exactly on Minocin, 100 mg., twice a day. (easing into that dosage over a 10 day period)
How I felt PRIOR to starting AP: years of moderate to severe pain in feet, hips, shoulders, hands and fingers; carpal tunnel, tendonitis, frequent migraines, fatigue and lack of energy, brain fog. Constant pain at night made sleeping very difficult.
Within about 3 weeks: noticed I was sleeping better because I didn't have to move every 20-30 minutes to lessen the pain from pressure on hips, hands and feet. Pain wasn't gone but marked improvement! Migraines had decreased.
Around 5 weeks: joint pain had dropped even further, but developed flu-like chills, nausea, achiness and stiffness. Tendonitis in shoulders flared up. Low energy and fatigue for a few days. Herxing?
6 to 8 weeks: FEELING GREAT! Almost no pain in joints. For the first time in years I can sleep at night without throbbing pain. Fatigue still decreasing and energy levels improving (pain relief could have a lot to do with that!). Migraines continuing to decrease in frequency (I'm guessing migraines indirectly rather than directly caused by SD – triggered by lack of sleep, etc.)I understand that my results are unusual after only 8 weeks on AP, and that 6 – 9 months or even a year or two on antibiotics is more typical for this kind of improvement, but I'm not questioning it. Just very grateful.
I'm taking a multi-vitamin, vitamin C (to prevent skin discoloration from the minocin), vitamin B-6 and B-12, Omega 3-6-9, flaxseed oil, calcium (but not with the anitibiotic), probiotics, milk thistle, and am trying to decide on the best enzyme (that doesn't cost a fortune). Also on lisinopryl for high bp and will discuss a calcium channel blocker at my next appt. I just received the IGENEX kit for the Lyme test, and am taking it to my rheumatologist this week to draw the blood.
To everyone on roadback, thanks so much for the great website, advice and moral support!! When I was finally diagnosed just over 2 months ago I reviewed a few websites that at first glance seemed reputable. Based on their “no cure” prognosis, it looked like my days were severely numbered. I firmly believe that if I had followed the advice of those “foundation” websites (that are clearly sponsored and influenced by pharmaceutical companies) and not found roadback, I would not have been around long enough to raise my daughter or watch her graduate from college, get married, or have my grandchildren. I will be forever grateful to roadback.
So, please keep up the fantastic work, all of you!
Congratulations, what wonderful news! Hoping that you continue your good health…….
You must have caught it early, and hope that this is an inspiration for those who are still struggling with SD.
Lakes – what a wonderful, uplifting post! Thank you for sharing and may you continue to enjoy better and better health and wellbeing. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Lakes, this is awesome! Thank you for sharing your success! I can't wait to read what you have to say in a few more months! Congratulations and good health to you! P.S. Would you let me know who you are seeing doctor-wise?? Thank you! I'm in Georgia too.
Blessings,
MichelleThanks for your encouraging responses!
One thing I learned from this is to NOT GIVE UP when trying to find a diagnosis. After years of pain and fatigue and negative test results for Lupus, RA, Lyme, etc. I went to my GP and said “I am fed up with this, test me for everything you can think of!” When my ANA antibodies came back positive, I took the results to my rheumatologist and asked her to continue testing from there until we find an answer. Then came the positive for the Anti-scleroderma-70 antibodies.
Looking back I wonder why I wasn't tested for SD before – my neurologist even expressed surprise that I hadn't been tested for it in the past and apologized for not thinking of it himself! However, it is a relatively rare disease, and our doctors are only human. It just reinforced in me that we really do need to be proactive with our own health care and do our own research, in addition to finding a good doctor.
I am very happy with my rheumatologist and she agreed to my sharing her contact information with other patients. I did have to ask her for the minocin for my SD, but she was very receptive and has other arthritis patients on antibiotics so she is not brand new to it. She is a very kind person and a good listener as well as being sharp and competent. If you are looking for a good rheumatologist, let me know and I will send you her information in a PM.
[user=1613]Lakes[/user] wrote:
I am very happy with my rheumatologist and she agreed to my sharing her contact information with other patients. I did have to ask her for the minocin for my SD, but she was very receptive and has other arthritis patients on antibiotics so she is not brand new to it. She is a very kind person and a good listener as well as being sharp and competent. If you are looking for a good rheumatologist, let me know and I will send you her information in a PM.
Lakes, do we have your rheumie on the RBF AP doc List? If not, would you kindly send me her contact info…name, address, phone, etc? Many thanks. She could be a great alternative for others in GA, especially being such an open rheumy! 🙂
I loved reading about your progress to date! It was great how you detailed everything from before to present and really provided great insight into how early detection and starting AP early can quickly turn the sclero monster around so fast. Well done for being so proactive on your own behalf and getting to the bottom of it all so quickly. *You* are amazing and such an inspiration!!!!
Peace, Maz
Yes, I did catch it before developing any serious organ involvement, but based on my symptoms I'd guess I've had SD for 5-7 years or more. My joint involvement and pain levels had increased dramatically over the last year and I developed high blood pressure suddenly, so it seems I caught it just as it was becoming more aggressive. Lucky timing!
I'd hope that anyone with scleroderma or RA would strongly consider antibiotic therapy, no matter how long they've had it or how serious it has become. I've read so many great success stories of complete remission, even in seriously ill patients. What is there to lose? It's an inexpensive medicine with few side effects (especially compared to medications prescribed for SD and RA symptoms that often make the patient feel worse in the long run!). A handful of crackers stopped the few incidences of nausea I had over a few weeks.
I realize my case is not the norm in how quickly I improved, but based on my research and almost overwhelming evidence, I had decided to stick with it for as long as it took (and plan to continue with AP for awhile). I also work for the NIH, and I trust the results of their clinical trials!! I know I must sound like an advertisement for Minocin now, but when I look back at how I felt just a few months ago I hate to think of anyone not giving this a try!How is your treatment going?
I feel so much better I hate to complain but I do get itchy, especially at night. I hear it's the SD but I haven't had any visible skin involvement yet – I hope the itchiness is not a precursor to that! If it is I hope my minocin continues to win the battle!
This is wonderful news! I really love reading posts like this…and yours was very easy to read (how you felt at 3 weeks, 5 weeks, etc into treatment). Who is your doctor or are you doing all of this on your own?
Lakes, I'm SO HAPPY for you! I know what you mean in terms of finding the Road Back.
My adult daughter was diagnosed with severe RA and 3 months in started on Minocin. Within weeks, she showed amazing improvement and by the 2 month mark had only one swollen finger joint So it can happen!
This was a few years ago but she maintains her Minocin dose and is essentially in remission.
Hi Orchid!
Thanks for your nice encouragement!
My rheumatologist wrote me the prescription for the minocin but I had to ask for it. I'm not sure if she would have suggested it down the road (she does have about half of her arthritis patients on antibiotics, so that's impressive) but I didn't want to wait even one day to get started. And so far it seems that approach has really paid off!
I do feel like I'm kind of running the show at this point, she is very sweet and receptive, but not very proactive or assertive. It is so great to have Road Back for guidance! My husband still wants me to go to one of the “experts” to make sure I'm on the right track and that's not a bad idea, but based on what I've been reading it looks like my treatment is pretty close to what other SD patients are prescribed by those top doctors.
What has your doctor experience been?
Wow! this is such GREAT NEWS!!
I am so happy for you! I cant wait to get my Mino level up to 100 mg, 2x a day, 7 days a week…. ( right now I am on 50 mg, 2x a day, 7 days a week )
Once I am up to the highest level, I hope I can see results as wonderful as yours!
Thanks for posting your success and please keep posting!
Connie
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