Do I seem like a candidate for AP?

[tinamills]

I was diagnosed with SS this Feb.  I have horrible joints, tendons GAVE (Watermelon Stomach) fatigue and neck stiffness that is umbarrable at times. Reflux, Heartburn, Reynauds with a new finger sore that won't heal.  I have itched in different places badly for 4 years now. My Rheumy at Kaiser said he had never heard of AP nore would endorse it and that my organs except for stomach are fine.  I feel hope in hearing about this new treatment.  My life is so that I just work part time now for benefits and come home and ice and heat so I can do it all again the next day.  I used to run 4 miles 4 to 5 days a week and am not the same person.  I have read Scleroderma, this treatment can save your life and want to go outside of Kaiser for treatment. I live in Northern Ca and am desperate.  I would love some  feedback from others. I heard about this Foundation from Sclero Inspire site.  Thank You!  Tina

[hopefulmama]

Dear Tina

Yes, I think AP can work for you!!! 

I am not even on AP yet and I can't wait to get started.  It looks as though we have similar problems, I am just in the diagnosis process but was told by the radiologist that did my cine-esophogram that the dysmotility in my esophagus is “consistent with collagen vascular disease”.  Looks a heck of a lot like scleroderma at the moment.  I'll keep you posted. 

Anyway, you have come to the right place and the people here are AMAZING.  In just two short weeks I have gone from desperate and crying my eyes out to feeling 100% hope and faith.  You would be amazed by the healing and remission stories that members of this board have shared with me, remission from scleroderma that sounds a whole lot worse than where yours currently stands.  If those amazing women can heal, I know that you and I can too.

I will send you a PM with the name of a woman who has given me so much help and assistance, and she has a great doctor in Sacramento that (while probably out of your network) works with the AP and could help you.

I wish you well and can't wait to hear your stories of healing.  We'll be along this journey together.  I know very personally how terrified and overwhelmed you may be right now but take heart.  The people on this board will get you through.  I've never met such an amazing group in my life.

Take care.
Andrea

[Kim]

Hi Tina, and welcome to the Roadback forum.

Antibiotic Protocol has worked extremely well for my Scleroderma/Lyme and am now living a pretty normal life with almost no limitations.  You can go to the Home section of the board, which is loaded with information about the protocol, but also Testimonials of other people that have gotten their lives back too.  As Andrea has said, some were in really bad shape and now are doing great.  You can click on the link in my signature line to see what has helped me along the way.

This protocol requires patience and tweaking and adjusting, but it does work. 🙂

Good luck getting started, Tina.  Let us know what we can do to help you.  We're happy to answer any questions you have, but you can also use the Search button to read previous discussions on topics that may be of interest.

Take care…..kim

[Tintap]

Tina
    Way back in 2004 it was rheumatologist in Kaiser ( I think Hayward or Fremont) who got me started on Minocycline for my RA ( I had not even heard about AP before that). Dunno whether she is still around. Atleast she might be open to the idea.

Cheers
Tintap

[Cheryl F]

Tina:

Welcome to the Road Back discussion forum. I am an RBF volunteer and I am also in northern California. If I can answer any questions for you on the doctors in your area, please feel free to call me at (916)532-2142.

AP can most definitely help you, my opinion of course, but an opinion formed from talking with a few hundred recovered/recovering scleroderma patients, one of which was my daughter.

Call anytime!

Cheryl

[mschmidt]

Tina,

Welcome to RBF! I'm sorry about your diagnosis but, please know that there are MANY AP success stories here (I, too have SD/Lyme combo).  It does take some time to feel the effects of AP so, patience is definitely something you need to have.  That being said, I was a MESS a year ago–terrible joint/tendon/muscle pain, horrific neck pain, swelling, joint contractures, skin hardening on most of my body, facial tightening, reflux, Raynaud's…. Today, I run 3-4 days a week, as well as lift weights and do other exercises 5-6 days/week, don't feel sick most days, have an abundance of energy, and am staring down remission:D  SO many of us here completely understand what you're going through, and are more than happy to offer our support to you.  I live in Chicago but, travel out to California to an AP doctor.  I'm happy to share my journey with you anytime as well.  Feel free to call me at:  773-294-4499.  You are in my thoughts and prayers, and please know that you have found an amazing group of SURVIVORS at RBF.  The people on this forum saved my life, and I'm forever grateful to them.

Maria

[tinamills]

Marie thank you so much for lifting my spirits. You have, or had a lot of similar things going on that I have.  I have had  a few people tell me it must be triggered by Lymes. My sister in  law has so many weird things going on, her dr. thinks she is a hypocondriac now. I actually talked her in to calling Igenex and she has an appt. this fri.  I understand there are things to print to bring to my dr. I would first like to see if he will go for it, If not, I will have to go outside of Kaiser for treatment. I e-mailed him with an update on my condition and all he said was,” thanks for keeping me posted!” While daily I slowly disintigrate.  I might be calling you and appreciate you trustung me with your number. I must first gather ammunition papers for approaching, He also downplays my pain and inability to do most things. I would like to try Ap first low dose and possibly test at Igenex if we can afford that route. Again thanks for really listening. I am a Christian and could not have made it this far without my Lord who is always with me.  May God bless you in your work he has called you to with this website.   Tina

[tinamills]

Andrea, thank you for sending me a name.  You are starting on AP very soon and will need prayer and I will be someone praying you through! I feel so many amazing emotions of hope with this site.  Are you having to pay out of pocket for the treatment?      Tina

[tinamills]

Cheryl. I will probablly be calling you down the road.  What is so amazing to me is that kaiser Drs gave my children tetracycilyne with lots of refills for acne when they were teenagers but they won't give it to me! I am just blown away with western medicine.  I'll keep in touch.  Tina

[Cheryl F]

[user=2577]tinamills[/user] wrote:

Cheryl. I will probablly be calling you down the road.

[cbnlewis]

I have just moved my mom & dad from GA to FL to be close to me.. Dad is 86 & diagnosed with Alzheimers..Mom seemed to be fine, she's 81.. then she came down with a horrible cold & everything went downhill.. Trying to get a firm diagnosis.. went thru chain of command.. Mom was so weak & could hardly breath..GP sent us to Rheumy.. From Rheumy we were told Scleraderma could be a possibility.. so were sent to all of the Organ Dr's.. Heart.. Lung.. Gastro.. Overnight sleep study.. then back to Rheumy for complete prognosis/diagnosis/& treatment.. Now we are still waiting for treatment..no one wanted to give her any treatment until all diagnosis were in… We've seen all the Dr's.. I'm at a loss of what to do.. To me time is everything.. especially when you are talking about my loved ones..  We live in the Tampa Bay/St. Petersburg area.. but I'll go anywhere to get the best treatment.. does anyone have any suggestions?  Thank you..   bl  🙂

[cbnlewis]

What is “AP”  (treatment mentioned thru-out discussion)

thank you

[Cheryl F]

AP stands for antibiotic protocol. It is an alternative treatment for scleroderma that is not well embraced by mainstream rheumatologists. We recommend that you read the books, Scleroderma-The Proven Therapy That Can Save Your Life and The New Arthritis Breakthrough by Henry Scammell, the books provide a good overview of this treatment so that you can decide whether it is an approach that your family wants to consider for your $other's treatment.

Also, as an aside, you may want to look into information regarding Lyme Disease and Alzheimer's and Lyme and Scleroderma, both conditions have a HIGH association with Lyme and can be treatable with proper treatment. Try a Google search on Alzheimer's Lyme. Also consider looking at the website http://www.immed.org.

Please let us know if you need help finding a doctor in your area or if you want the contact information for the most experienced doctors in the US.

Cheryl

[cbnlewis]

Wow.. that was quick.. thanks for your comments.. I will definitely check them out.. I had no idea about the lyme disease affiliation.. thank you.. bl

[Maz]

[user=2677]cbnlewis[/user] wrote:

What is “AP”  (treatment mentioned thru-out discussion)

 

Hi BL and welcome to the Road Back Foundation discussion forum. I'm thinking you must have found your way to us without going through the main site and reading the info there first? No worries about asking…there could well be others out there having found this site and wondering the same thing! 😉

http://www.roadback.org

AP stands for “antibiotic protocols” as per rheumatologist, Dr. Thomas McPherson Brown who passed away in 1989. This website was set up to preserve his legacy and 5 decades of treating rheumatic patients very successfully with antibiotic therapy…namely the tetracycline class of antibiotics (like minocycline, doxycycline and tetracycline) as well as intermittant IV clindamycin.

If you'd like to learn more about AP for scleroderma, there is much info on the main site (link above or just click on “Home” above right of this page), as well as in both the Henry Scammell books, which are must-reads to fully understand the rationale for using AP. These are The New Arthritis Breakthrough and Scleroderma-The Proven Therapy That Can Save Your Life.

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/14.html

There are a couple of physicians in FL that are familiar with AP, but will also send you the name of one of the most experienced AP docs in Iowa, as he is very open to consulting by email and phone with patients and physicians wanting to learn about the therapy and you may decide it worth flying there for a week to receive the 5-day IV clindamycin series and to get your Mom going right away on minocycline. The earlier AP is begun, the swifter the response, and scleroderma does seem to be one of those rheumatic diseases that responds very well to AP (if indeed your Mom does discover she has scleroderma). Nevertheless, it's very important to understand that AP is a longterm therapy and the goal is to slow progression first and halt it in its tracks…after which improvements just keep coming. 🙂 Your Mom is so early in the game, however, there is every reason to assume she should be able to get to grips with this relatively quickly, taking into account her age.

To retrieve your private message with a physician list, just look top right of this page and click where it will say, “You have 1 new message.”

Again, welcome, and so glad you found us…you must love your Mom very much, BL!

Peace, Maz

[Author]

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