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I was diagnosed in September 2009 with aggressive systemic scleroderma involving my esophagus, lungs, heart, intestines and skin. I started AP in November 2009 and then in May 2010 was diagnosed with chronic lyme and began treatment with the addition of Azithromycin and increased Minocycline to 300 mg/day. I am also taking a couple supplements. At 6 months into AP, I felt about 90% improved. Today, I feel completely well and healthy again. The joint pain is completely gone. I self-referred to request a follow up echocardiogram which was completed last month. The results were normal (previous to AP, I had moderate pericardial effusion). My heart rate has finally returned to normal (it was fast > 100 prior to AP). Today, I had a follow up PFT done with DLCO 91% and all other results are now normal (prior to AP my DLCO was 67%). I now have objective evidence that AP works. My skin has almost completely normalized, just some residual yet in my hands that also continues to improve with every day. I had problems swallowing, but that resolved months ago. I wanted to share this with all of you, because even in the darkest hour, I want you to know there is hope to recover from this terrible illness.
Bless you for posting this, and congratulations on reclaiming your life!!!!!!!!!!!!!!!!! This is a huge inspiration to me. I think this may be just the kick in the pants I need to take care of the lyme and follow whatever directives my new LLMD suggests next week. Thank you so much for that.
You are proof that miracles happen 🙂
PS I hope you post this on the Scleroderma Inspire Board!!!!!!!!!!!!!!!!!!!!!!
what a wonderful uplifting post Vonni. Thank you so much for sharing this and great good wishes for continued good health. 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)Hey Vonni;
A;; I can say is WOOOOOO HOOOOO!!!!!!!Have you noticed the number of nurses on the Inspire site that have SD and don't even stop to think that this is an infectious disease?Sheesh!Vonni,
You are an inspiration! And what a good example you've set for those yet wondering if there is anything to this “AP” treatment.
Best to you,
AFMy eyes welled up reading this, Vonni, just overcome with joy for you!
You will be a great advocate for spreading the word about AP because there's nothing like walking proof, oh, and those labs for the doubting doctors don't hurt either. 😉 Truly amazing!
Take care……kim
That's great!!
I wonder if the people on this site who regulary experience such success with AP have considered posting their results on the yahoo group “scleroderma support.” There is so much “woe is me” negativity over there. I once inquired about AP and someone immediately responded that it didn't work and then all the naysayers came out and that was the end of it.
Hi-Unfortunately that is the attitude among many sites –Yahoo –Scleroderma Foundation etc —after running into this for about 11 years –I found it doesnt pay to waste time trying to convince some people that antibiotic works for scleroderma —After mentioning it once and if no interest is shown or someone tries to dispute it –I just forget about it –its their loss–
richieI have to agree with Richie. It's (sometimes) different when individuals who are already regulars on a particular site talk about something they've discovered that's been helpful or has worked for them. Even then, it can sometimes be contentious. People going to a site specifically to talk about a particular therapy is a different matter and is likely to turn people off or make them angry at what they see as proselytizing. The Road Back Foundation website and this Forum is here for people who are curious and want to find out more about antibiotic treatment for rheumatoid diseases. In my experience, AP is an approach to treatment that tends to attract 'upstream swimmers'. 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)WOW!!
Congratulations! awesome news, I am VERY happy for you!
Thanks for sharing this with all of us.. it certainly goes a long way toward giving all of us hope and lifting our spirits!!
Thanks again!!
Connie >^..^<
As far as spreading the news, it's horribly frustrating to have your bubble burst by naysayers saying AP doesn't work when you know differently, but I think we still have a responsibility to spread the word to those fighting the same battle. Some will listen and some will get better, so how can we not?
Take care…..kim
[user=40]Kim[/user] wrote:
As far as spreading the news, it's horribly frustrating to have your bubble burst by naysayers saying AP doesn't work when you know differently, but I think we still have a responsibility to spread the word to those fighting the same battle. Some will listen and some will get better, so how can we not?
Take care…..kim
I can identify with you Kim, and also know the feelings of the others whose words may have been ignored or rebuffed. Something I read years ago, however, has stuck with me over the years … our responsibility is to continue to plant seeds, knowing that the result is out of our hands. But if we plant no seeds, how can we expect a “harvest” of any kind? So, perhaps in a kind way, while some of us may feel the fear and apprehension, I hope we will plant seeds anyway!
AF
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