Newly diagnosed with Scleroderma

[Anonymous]

Hello,

I found this site (Road Back)and was quite eager since my scleroderma seems to be progressing. I sent the link to my Rheumatologist, asking if we could use this protocol but she countered saying it failed a study in 2004 (http://www.ncbi.nlm.nih.gov/pubmed/14872498 ) and she would rather treat me with Methotrexate. As far as I can tell, that works by not allowing as much interaction by the immune system, kind of disabling the immune system. It seems to have harsher impacts and more serious risks and side effects.

At this point, my scleroderma is in the early stages, my hands are affected, the skin on them and my feet and face are tight and cause it to be hard to do things. My muscles and joints also seem to be a little involved, I am a runner, and am no loonger able to run as well or as far, and my ankles and feet are not only significantly tight and go numb, but the fatigue is significant as well. My joints also seem to be involved, some of them being very sensitive to the touch, as is some of my skin. I do know that it seems I am in an early stage, but I think the outcome would be better if this is tackled early rather than later. It scares me a little, since I went to bed one night with my hands sore, but when I woke up, I had four places that were showing the “pitting” common in this diagnosis. So it seems this is progressing and I would like to do what I can before it becomes more detrimental. My doctor seems to think the Methotrexate is a better option.

Do you have any advise for me?

A. Smith

[richie]

Suggest you read all the patient reports about their use of antibiotic in the treatment of scleroderma –I also might suggest you read my report and my follow up about my use of antibiotic and my remission -{its now about 8 or nine years that I have completely recovered }—Once you make a decision -folks here will send you names of doctors who use this approach and others who have had the same success I had will be glad to share their treatment experiences also .First step -is you have to choose a direction —You also have to assemble your team –an internist to help with all the symptoms and a rheumatologist or AP doctor to fight the over all disease .I would be glad to be of help and relay my personal experiences .–Incidentally ,this 2004 study was designed to be a failure –I might add that was the goal —
Richie Stone

[lynnie_sydney]

Hi
Understand your confusion. It’s a good thing to post here and also to read up as much as you can while you are considering which way to go. Richie has given you some very good pointers and hopefully some other people with SD who chose to go the AP route will join in this discussion.

patient stories are here on the main site

https://www.roadback.org/index.cfm/fuseaction/community.sub/subgroup_id/6.html

and some other studies you may like to look through here

https://www.roadback.org/index.cfm?fuseaction=studies.sub&subgroup_id=16&SR=1

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)

[Maz]

Hi Alices,

For possible extra interest…here are more studies of growing body of evidence for infectious causes of SD:

viewtopic.php?f=1&t=9347&hilit=

The Mayes study was analysed by a statistician on this forum who is on AP for her SD and found it to contain several significant flaws. She kindly gave Road Back Foundation her analysis and would be happy to send this to you if you would like to show your rheumy or just to read yourself. It is a bit non-sensical that physicians, who rely on “evidence-based medicine,” are taught at med school that scientific studies must be replicable in order to be validated, but yet accept just one study to deny a treatment to patients? Minocycline is a very benign treatment – used to treat teen acne – and can be used safely, long-term, alongside other rheumatologic drugs, as per Dr. Trentham, the Harvard rheumatologist who ran the “Minocycline in Early Diffuse Scleroderma” trials (before the Mayes study).

See section entitled,“Thoughts about Scleroderma and Minocycline.“

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/508.html

Richie and other old-timers, who frequent here, are living proof that minocycline can work very effectively for scleroderma! 🙂

[kater]

HI
I have diffuse SD also–diagnosed about 2 and a half years ago and have been on AP for 2 years. My rheumy wanted me on Plaquenil and Methotrexate but I refused. I just can’t accept this auto immune idea that my own body is trying to wreck me–also if there is infection, the way mtx suppresses the immune system is not a good thing. The infectious theory made sense to me and I have found infections with mycoplasma p and Lyme which seem to be very common infections in people with SD–if you investigate with the proper tests. I am also doing treatment for the Lyme and now have very little left in the way of symptoms–raynauds, collagen in my palms, occasional stiffness in my fingers and a slight bit of tightness on the sides of my neck. Fatigue is the symptom that still gives me some grief on work days, but hey I am back at work. It is not likely you will easily find a rheumy who believes in AP, but there are many other docs you can talk into it if you do your homework. My rheumy was totally opposed initially and mocked my prescribing doc. After seeing my improve however, he recently said he needs to remember Minocycline for the next person with SD who walks through his door. He told me now to stay on Mino for life–if that’s all it takes to keep this nasty disease at bay. Good luck to you in your research, decision making, and healing. The people on this website are amazing and I credit my recovery to them and their willingness to share what they know.
kate

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, C

[Anonymous]

Hello Maz,

Thank you so much for your response. I would be interested in reading the material provided by the person who analyzed the report my rheumatologist gave me. It seemed poorly done to me, especially only measuring skin when there is so much else involved. Could you send that to me? I will meet with my Rheumatologist next week, and hope to have some material compiled. I intend to find a person who will support this protocol and wil ask Road Back for their list of AP doctors in the area, but it would be a good idea to aquaint her with this protocol, and maybe be that patient for her that gets better on it, so she will feel that this is an option she can suggest to others.

Do you need my email in order to send this report to me?

Alice

[Maz]

@alices wrote:

I would be interested in reading the material provided by the person who analyzed the report my rheumatologist gave me. It seemed poorly done to me, especially only measuring skin when there is so much else involved. Could you send that to me? I will meet with my Rheumatologist next week, and hope to have some material compiled. I intend to find a person who will support this protocol and wil ask Road Back for their list of AP doctors in the area, but it would be a good idea to aquaint her with this protocol, and maybe be that patient for her that gets better on it, so she will feel that this is an option she can suggest to others.

Do you need my email in order to send this report to me?

Hi Alice,

I saw your email come into the Road Back apdoctors email inbox, so if that’s okay will use your email there to send a reply with the Mayes study critique in a few mins. Going on memory here, but I believe that the point you raised – only measuring skin scores – was actually one of the critiques of the study, as well as duration of study (can take over a year to slow disease progression and to start to see improvements in SD), low dosing (50mg BID was half the dose used in the Harvard trials) and also the incorporating data collected from drop-outs in the study, which skewed results.

There is just one doc listed for your city/state who is a conventional rheumy, but who also ran numerous trials using minocycline for RA. Not sure if he would be open or not to using it for SD, but you can check. Other than him, there is a doc in Iowa who will consult with open local physicians on the treatment (don’t need to be rheumies) or, if you can travel out of state, just let Di know where. There are some good docs along the west coast, including the “most experienced” rheumy in Riverside CA.

Kater and Richie (both above) are fantastic examples of how abx therapy works for SD, so you should get a lot out of asking them questions about how they got well and how long it took, as both took slightly different approaches.

[enzed]

Alice,
I’m another SD who has made startling progress on AP since I began it in October 2012. The skin thickening on the backs of my hands and one side of my face has melted away, my crooked toes straightened up again, the Raynauds is now minor compared to last year, the dry mouth is dry no more, my dry eyes have improved (as has my vision) and best of all, my blood tests now show my immune system is functioning normally again.

My rheumy is furious with me because I have never agreed that my immune system could be ‘attacking’ me – what a lot of rubbish that theory is, and as a result I refused to take any of the drugs he recommended to ‘suppress’ my immune system. It wasn’t until I stumbled over the Road back Foundation and checked out the AP and began treatment, that changes began to happen.

I began on Minocycline for 6 months but couldn’t tolerate it any longer, too much reaction to the herxing. I then switched to Doxycycline in April this year. But when my doctor added Roxythromycin to the Doxy the skin changes were just amazing and so rapid I could hardly believe it. The skin thickening on my hands just disappeared within about 2 weeks of adding the Roxy.

I am now taking 100mg of Doxy twice a day and an additional 300mg of Roxy twice a week. My stomach is starting to complain so I am considering a 2 week ‘washout’ over Xmas and new year with a restart in early January.

I initially approached my family doctor to ask for Mino in October 2012, because the rheumy had refused to prescribe it for me. My doctor had no knowledge of AP but I went armed with some sound research articles recommended by Maz and he read them then immediately agreed to prescribe Mino. The research article that impressed him the most was the one by Alan Cantwell that Maz sent me. If you google for ‘Alan Cantwell scleroderma antibiotics’ it will come up on the search page. (Sorry, can’t do links).

I have kept a regular diary in the personal thread if you want to review my progress. It hasn’t been all roses that’s for sure, but I am now recovering, with so many gains along the way, and my poor old much maligned immune system is grateful!

One more thing I have noticed lately, again since adding the Roxy to the Doxy. My hearing; I went quite deaf 5 years ago without warning and needed hearing aids, but in the last 2 months I have regained a lot of my hearing. I can now even make out what someone is saying in the next room – without hearing aids – I certainly couldn’t do that before AP. I no longer wear them. Previously I had to lip read.

I still can’t walk without very soft shoes / sandals, as the tendons under my feet have shortened, so that remains an issue. I have to detox daily or become quite toxic from the bacteria die off, and I use the ‘mean green’ juicing drink recipe to detox. It works for me.

The family doctor and his locum have both cooperated with me throughout this AP journey and I am very grateful to them for their support. I don’t think we need the rheumy’s – the family doctors can prescribe AP – they just need to be convinced by the wealth of reliable research available.

[Krys]

Hi Alice,

I have never been diagnosed with SD, I have never seen a rheumatologist, never run the tests for SD. I have chronic Lyme (almost recovered) and mycoplasma p.
Among my symptoms, I had many SD ones: severe carpal tunnel (it is almost gone, but it is a single symptom that never completely disappeared), thickened brown skin patches with bleeding ulcers, Reynolds, all facial wrinkles disappeared, facial skin became stiff and thick, my mouth became very small and I could not smile, I had problems swallowing, gerd, thick cracking and bleeding skin around nails, dry eyes, dry mouth.
I chose never to read the full symptoms of SD, so maybe I had missed some in the list above. I trusted that treating Lyme would heal all of my symptoms. And abx just did that!!! Each time I had to go off abx (my organs needed a break from very heavy abx protocol for Lyme), my SD-like symptoms would re-emerge.
After 2.5 years of daily abx for Lyme (with a few needed breaks), almost all my symptoms disappeared!
I think that if I had been treated with steroids instead of abx, I would have been long dead.
I am very, very grateful for being treated with AP and very proud of myself for refusing to be treated by docs who did not want to prescribe abx.

I hope that you will choose whatever resonates with you and that you’ll find your roadback to wellness smooth and speedy.
All the best to you,
Krys

[mlouise]

I have had SD symptoms since 2009. I was diagnosed with SD at Johns Hopkins SD Center in 2010. I have diffuse with lung, heart, liver as well as skin involvement. I was put on Cellcept at Johns Hopkins. I was on it for 4 months. I would sit and read and reread with little brochures and pamphlets they gave me at Johns Hopkins. All the people were smiling and happy in the pictures. They did not look like I felt! I wondered whether they were in remission or did not have the disease as badly as I did. Finally I decided to go to Amazon and look for any books I could found on SD. I found the book, SD The Proven Theory that can save your life. I read the reviews and the folks who wrote the reviews mentioned a website called the Road Back. I went there (or rather here).

I next day I threw the rest of the Cellcept in the trash (by the way, it had cost me $400/month for the pills.) It took me a while ( with help from the wonderful folks here) to find an AP doctor in PA, but once I found him, I have been improving wonderfully. I am not 100% yet, but I believe that if I had continued on the path prescribed by the experts I would be dead.

I still have lung and heart involvement, but I am able to walk for 2 miles (no hills) without help. I can play the piano again (no octaves yet). My skin has loosened up greatly. I have wrinkles! 😆 I hope you will make a better choice, not based on the standard protocol, but based on living results. Find some people who were using the standard protocol 5 – 10 years ago and ask folks here about their results. My husband and I had determined after the first visit to the Road Back that even if this therapy did not work, the QUALITY of life was worth it for the time that I had left. So far, I have outlived the JH Doctor’s predictions.

[Author]

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