AP for Systemic Scleroderma

[Heather]

Hi everyone, I’m new to this forum and extremely ill. I have been struggling since July with weird rheumatic symptoms that are progressing quickly. I had a question as I research systemic scleroderma (most symptoms fit this the best), does AP work for systemic? When I do a general search about this the first thing that pulls up is negative response with monocycline (sp) and that it has not been proven helpful in any studies. I’m desperate to stay off any and all DMARDS etc. They just put me on prednisone for a 12 day taper and I’m not taking that either. I am doing a full AIP diet right now and just suffering through the pain. I’m a single mom with no family in state and I would like to take care of my kids (insert whine here). I’m in Utah and the one person I knew of that does the AP is out on medical leave and I think he may be retiring because he’s like 72? Thanks for all input.

[Lynne G.SD]

Hi Heather;
You bet it works.I was a pretty sad case and petrifying from head to toe 20 years ago.I’ve been on AP 17 years as of Nov. and have only had a few little hiccups now and then when I forget to take my mino for a few days.
If you are refering to the info put out by Mayes some years ago about AP being useless I can tell you the trial was terribly flawed.I expect that Maz will give you Susan’s rebuttle as I am running like an idiot tonight and don’t have time to go looking for it.
You are in the right place. xxxxx Lynne

[Heather]

Thank you so much Lynne, I really appreciate your comment during this freak me out of my brain time.

[Maz]

Hi Heather,

Welcome to the RBF community! There are two AP docs listed for Utah that I’ll send you in a private message. Just hover your cursor over where it will say Hello Heather and then select New Message to receive it in your Inbox. Perhaps you could reply to me via PM to let me know which doc is retiring in Utah as it may be one of the two we have listed? Thank you and hope to see you post here again. I ditto Lynne…I have volunteered for RBF for the past 8-9 years and it’s truly remarkable how well the majority of SD patients do on AP, especially when caught early. Also, if you can’t find an AP doc to help you, a GP or open rheumy might provide you with a script and there is a very experienced AP doc in Iowa who is kind to freely consult with local docs. I will also send you his contact info.

[Crunky]

Hi,

I started those petrifying symptoms in September 2014. I was diagnosed with system diffuse scleroderma in Jan. 2015. Started A/P treatments in June 2015. Now in January 2016, I have lost all of those terrible symptoms…swollen rashy face with fluid sacs under eyes and above eyes, swollen fingers and hands, swollen legs and feet….fatigue (I feel 85% more energy now)…painful wrists, fingers, toes, ankles all pain is gone….moles popping up everywhere (that has stopped) and I have had some removed….hair loss stopped after I started using Surface “Awaken” shampoo and conditioner.

SO, yes, I think I could truthfully say that antibiotics work on system scleroderma. And, I am so happy to be able to tell you that.

God bless.

[Susan(SD)]

I am another success case for AP approach’s effectiveness on diffuse systemic sclerosis (scleroderma). I noticed changes in 3 months and definite improvements by 6 months. It doesn’t cure – but it controls scleroderma so you can function and it did reverse many symptoms, and most importantly, stopped the progression of symptoms. My symptoms were coming on so rapidly the scleroderma research Doc specialist said I had the symptoms/progression of 2-3 years compressed into 9 months so her notes in the chart said my symptoms were “galloping along”. She predicted I would get renal crisis and advised me to take my blood pressure everyday! Thanks to AP I never formally got internal organ involvement. As for the research, I am a researcher, and found some studies (basic science) to support AP’s theoretical approach and wrote a critique of Maye’s article (claiming minocycline is not effective for scleroderma). My analysis of her data does show a positive effect of minocycline.

[jasregadoo]

Hi Heather, welcome to the Roadback! I don’t have your same diagnosis, so I won’t speak to that part of it. But I wanted to comment on your decision to not take any prednisone. We all know how dangerous a drug prednisone is, and of course you cannot stay on it long term. But I can tell you my own experience. I was on prednisone for a little while, and it helped me SO much. As I tapered off of them, my symptoms did come back, but they never came back to the extent that I had them before. Reading ‘The New Arthritis Breakthrough’, I see that Dr. Brown, the pioneer of this treatment, did give his patients prednisone to help them with their pain and inflammation. Also, the prednisone can sometimes help the antibiotics get in to do their work.

Perhaps someone with the same condition you have will say differently, but my two cents is to not rule out something that can give you so much relief. Of course you can’t stay on it, we all know that. But short term, it is perfectly safe.

[Lynne G.SD]

Hey Sue;
So nice to hear from you again,I was wondering what had happened to you.I don’t know if you read the SD foundation’s Inspire board but I sure have had lots of fun trying to defend AP over the last few years.Your work make it so much eisier,thanks a million.maybe you should post it here for the benefit of the new comers who are sitting on the fence.
XXXXX

[1234zoe]

Hello, I have not been diagnosed yet , but have been experiencing many of the symptoms of diffuse scleroderma for the past 15 months. I live in Toronto, Canada; and have been in a nightmare trying to get any where in this crazy medical system. I have skin tightening everywhere, facial changes, and pain everywhere, elevated ANA – so many crazy things happening. No real raynauds yet, so the last rheumatologist decided it wasn’t Scleroderma. She couldn’t see what my GP, a dermatologist, and the internist at Emergency could see. I have an appointment with a new rheumatologist in a couple of weeks,now 4 months since the first one, and of course getting much worse, but I suspect I will have trouble getting her to agree to letting me try AP. does anyone know if there is a doctor in Toronto that would help me? Thank you so much.

[Maz]

Hi 1234zoe,

I will send you what we have listed for Ontario. To retrieve your PM from the system, just hover your cursor over where it says “Hello 1234zoe” and when the pop up menu comes up, select Inbox to view your message from me. Hope one of the docs can get you started on AP asap.

[Lynne G.SD]

Hi Zoe;
You really should see Dr. Janet Pope in London as she is the only SD specialist in the province.For sure she will not go for AP but you really need to have good baseline testing done as this is a dangerous disease.Read http://www.sclerodermainfo.org.It is by far the best info available and you can find out everything needed test wise.You will note that it says that AP might be a good option so you should print that up for your doc if you can’t get an AP doctor.My family doc wrote my prescriptions for years provided that I did the studying

[SherryP]

Can any of you who have had success with the AP tell me how to deal with the debilitating fatigue? My husband has the symptoms of systemic but his blood work was negative for scleroderma although positive for autoimmune disease. He has been on Minocycline as well as Doxycycline since June of 15 and is doing a lot better overall but the fatigue is just overwhelming! He is also low on iron so he is taking an iron supplement as well as using a B12 patch. Any help would be appreciated. Some days he feels normal others he can barely get out of bed.

Sherry

[Lynne G.SD]

Hi Sherry;
The fatigue will leave but it takes time so don’t panic.I’m not sure about the iron supplement unless he is extremely low as micoplasmas love to feed on iron,that could be why he is low also.B12 needs to work along with a full B supplement.I hope he is taking the sub lingual B12 as the regular one does not absorb very well.Fatigue can be caused by yeast and just about everyone who has any severe illness will have it so it’s imperative to stay away from sugars and starches that rapidly turn into sugar.The only way I could eliminate my yeast problem was by taking Flagyl,1 tablet daily for 5 days on and five days off for a month.It” been a recurring problem for me throughout all my years on AP.Hope this helps,Lynne

[SherryP]

Thank you Lynne! He is using a B12 patch for better absorption. His doctor told him to continue the iron but she is not well versed in Scleroderma, mainly a GP who agreed to write a script for the Abx. She has gone to this site for information though and I am so very grateful for a doctor who will at least work with us. I am sure he will read this post later so thanks again for the information:)

Sherry

[lynnie_sydney]

Hi Sherry
Depletion of B12 can be caused by acid reflux medication. This is what has happened to my Dad, whose iron levels were also found to be low. And deficiency in both these things adversely affects energy levels. So, while there are obviously other things in your husband’s mix that need dealing with, his fatigue should be helped by B12 patches or injections and by iron supplementation. My Dad has found that he tolerates drinking iron water much better than taking iron tablets/capsules. Make sure your husband takes vitamin C also – iron is very difficult for the body to absorb and Vit C assists absorption.

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)

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