Two Years Ago Today

[Cheryl F]

Hello To All My RBF BBoard Friends New and Old:

I want to post about my anniversary with learning about AP Therapy.  Two years ago today (the Day not the Date), it was a Friday, and one of the days I work in the office.  For the prior couple weeks, since May 24th that year, I hadn't gotten much work done.  My daughter, Jess, was diagnosed with Systemic Scleroderma on May 24th, and I had done enough reading to KNOW, she was dying.  I was a zombie, I couldn't do anything.  I am normally a fairly bright person, and known on the job as a good thinker and a very good writer.  But on that day, I was not getting anything done (yes, my bosses know this), and was surfing the internet for information.  I came upon an E-Book called “The Scleroderma Home Treatment Guide of Naturopathic Remedies[/size%;”>[/size]” by William Bodri.  Well, I got my credit card out and ordered the book, the PDF was delivered to my work email address immediately.  So, I started reading.  The preface of the book starts out,

[align=left]“Whenever I create a book for the public, I usually restrict it to things people can do at home on their own. It makes no sense to talk endlessly about drugs and medications in a naturopathic manual.
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[align=left]First, you can?t prescribe them yourself, secondly it?s your doctor?s responsibility to tell you about them and lastly, you can find loads of information on the internet about drugs, but rarely about the naturopathic protocols that [font=FFJKFF+Arial,Italic,Arial]really [/font]work. [/align]
[align=left]As a medical journalist, I usually restrict myself to holistic naturopathic remedies and since most pharmaceuticals are not usually part of a holistic protocol, I leave them out ?
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[align=left]? except when something truly extraordinary comes along that involves a pharmaceutical approach that can resolve your condition and save your life.
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[align=left]That exception for scleroderma is the original Dr. Thomas McPherson Brown protocol for rheumatoid arthritis that works extremely well for scleroderma. Most doctors have never heard about this antibiotic protocol, but it works in resolving scleroderma in many cases and has been adapted and improved by the famous alternative medical physician, Dr. J M.
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[align=left]As stated, this protocol may save your life, and it?s one of the most important things I can introduce you to. Your doctor has to put you on this therapy, so pay attention and get as much information as possible before you try to get him to do it, otherwise he?s just going to refuse, forcing you to perhaps travel hundreds of miles to find an open-minded physician.
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[align=left]The Road Back [/font]that Dr. Brown wrote in association with Henry Scammell. The newest version of his protocol is in the book, [font=FFJJOC+Arial,Bold,Arial]The New Arthritis Breakthrough [/font]by Henry Scammell, which includes the original book written by Dr. Brown as well as updated information that has been created since Dr. Brown's death in 1989. “
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[align=left]The interesting thing was, I had stumbled onto this information a couple weeks prior, but didn't even read it for more than a few seconds.  I dismissed it as “too good to be true” and “if this were real, our Rheumatologist would have told us about it” (you know he was one of the best in the area, head of Rheum. at the large teaching hospital).  BUT, I had just paid $35 to buy this E-Book, so somehow in my stressed out, brain-fogged mind, it now had more credibility.  So, I stopped reading my new E-Book and Googled The Road Back Foundation.  (I didn't look at the E-Book again for several months.
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[align=left]So, after reading for awhile, I figured, true or not true, this treatment was certainly worth a try.  Nothing was offered by the Rheumy, doing nothing is REALLY NOT MY STYLE!  So that afternoon, I emailed the Antibiotic Network Contact for my state, California (I still have a copy of this email).  As I did this from my work email, I didn't see the reply until the following Monday morning.  The reply came from this wonderful gentleman, who I now call a friend, John McDonald. 
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[align=left]Over the weekend, I went to my local Border's Book Store, and most of you will not believe this, they had two copies of the book, Scleroderma, The Proven Therapy, on the shelf, this in itself is a small miracle, I didn't know it at the time.  I read the book start to finish that Sunday afternoon, into the middle of the night.  I sobbed the entire time, thinking could this be true, could there be a small chance that my child was not going to die soon?  Reading those stories, it sure seemed real, and even if the chance were smaller than was being reported in the book, I intended to move heaven and earth to get Jess this treatment, FAST!
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[align=left]John held my hand in those dark days, and coached me while I found access to AP for Jess.  Jess was in pretty bad shape, fatigue and shortness of breath were overcoming her.  The pain in her fingers was nearly unbearable sometimes.
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[align=left]By Monday evening I had appointment for Jess with a Northern California experienced AP doctor who did IVs, and Dr. T in Boston. 

Most of you reading this know, THE REST OF THE STORY, but for those who may stumble on this in the archives someday, or even next week, here is a link to Jess' testimonial on the RBF Website.  https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/489.html
The story is still the same, only now, another year has passed since she wrote this.  She is still doing very well.  She just returned home from college today.  She did very well, academically, athletically, and socially.  She pushed the envelope like and healthy 18 year old would have with many all night study sessions and other ;).  She had a blast!  I am confident in saying that she would not have had this experience if it were not for the work of Dr. Brown and the volunteers with the Road Back Foundation. 
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[align=left]For all of you who helped me along the way, John, Diane, Leslie, Pat G., and, AF, Jess and I offer our heartfelt gratitude! 
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[align=left]Sincerely,
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[align=left]Cheryl [/align][/size]

[JBJBJB]

Cheryl,

Your wonderful story made me in tears. As a mother of type I diabetic son, I know how devastated you must have felt when Jess was first dx. I am really glad she has been recovering well and doing well.

I echo what you said about all these wonderful people who held your hands, walking you through this darkest time in Jess and your life. I feel the same way and gratitude toward all the people on this message board, as well as Perry of Road Back Foundation. You all sure held candle lights for me, guided me to the road back to find Dr. S in Iowa. I get unrelentingly support and understanding from you all which I needed the most.

Thank you, Cheryl, for volunteering your time and energy to help us new comers. Like you, Cheryl, I will pass all these kindness to other patients.

In Health We Cheer for Jess!!!

JB

[whaleharbor]

Cheryl,

Congratulations on your victory and many blessings to Jess.  She is so very lucky to have a mother that loves her so much and is willing to fight for her healing.  You are certainly strong!

I thank you both for reaching out to all of us for keeping the information out there for others like me just struggling to get well.  I have read your posts…some that you have written to me and some that you may have made long ago to other patients unrelated to me and they have guided me during some of the darkest days of this RA nightmare for me.  You can't even begin to realize what a blessing and beacon you and the other “veterans” have been to me.

I rejoice in Jess' wellness for you, for her and for me because it gives me hope for all of us.

Well done, Cheryl and Jess. May God bless you.

– – whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Parisa]

Cheryl,

Thank you for sharing your story.  We can all relate to those dark days when you first find out you or your loved one has something that medicine can't treat and then to miraculously discover that there is a possible cure.  It's like being stuck in a cave.   If you stay there you know you'll slowly die but if you move you have the chance of returning to the light and all that you enjoyed before.  So glad your and your daughter's stay in the cave was short and that you're enjoying the light again.

My husband and I occasionally see glimpses of light and just have to keep hoping our path will lead us out also.

[Missyb]

Cheryl,
Thank you for posting this fantastic message of hope :D. I am so happy for you and of course, your little girl. Thank you so much for your call today. I can't believe there is a chance that a lot of what I'm experiencing can be alleviated. I'd think it was too good to be true if we hadn't spoke!
Thank you so much!
Missy

[Pip]

Has it been a year since she wrote her testimonial???  How time flies!

Anyway, it's so wonderful that you, and we, found the RB.

Hugs,

Pip

[lynnie_sydney]

Wonderful overview and update Cheryl – especially for those at the 'could this possibly be true?' stage. 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)

[Michele]

Cheryl,

Thank you for your beautiful and moving post. I am so happy for you and Jess! It brings back memories of my conversation with you last Fall so clearly. The “circle of life” is actually many interconnected circles. Thank you again and for all the wonderful people on this board helping each other along on this journey…The Road Back!

Michele

[superperroRA]

We are all very fortunate to have you as one of our volunteers at RBF. I admire you and Maz tremendously, and always listen intently to what either of you has to say. I wish I could put both of you on TV, talking about the benefits of AP,…

[Goodwife]

Cheryl,

I also had tears in my eyes when I read your post.  I could have written that post.  For after my husband's dx, all I could think of was that he 38 yrs old and dying, and not going to be around to see our children grow up.  I spend many sleepless, eatless days and nights on the internet, and also stumbled on the ebook and purchased it.  I ALSO skimmed over the antibiotic section and did not pay much attention to it.  I was focusing on  the 'home remedies' that we could do.  When we met with our rhemy for the second time, I was telling him about all of the things I read in the ebook and was trying, and basically asking him his opinion.  HE COULDN'T HAVE BEEN LESS INTERESTED.  I went back to the internet and found rheumatic.org and roadback site, and this board.   I don't know if you remember, but YOU were the first to reach out to me and I still have a copy of the email that you sent to me telling me everything was going to be ok.  Ironically, I hadn't even remembered that the ebook contained that section on abx until I read that through one of your other posts.  Then I went back and re-read that section.  Jess' story has been an inspiration to me from the beginning, and I thank you for all you have done to help me and my hubby get where we are today.   Good luck to her for a long, happy healthy life and to your family.  You and many others have helped me through those dark days and hopefully anyone reading these posts will be helped just the same. 

[Kim]

Hey Cheryl,

Thanks for posting your two year update, which by the way, made us all cry happy tears. 

You are truly an amazing woman!  After you did everything humanly possible to obtain the best health care for Jess that first year, one might think you'd have relaxed a bit to pick up the pieces once she got healthy.  After all, mission accomplished, right?  Instead, you were so fighting mad at the ridiculous obstacles that you decided to do something.  I think we're all mad at the ridiculous obstacles, but for now are just trying to keep our heads above water. 

The crusade you have mounted this last year and the heads you have turned by telling Jess' story over and over again, is nothing short of phenomenal.  For those who don't know, Cheryl posts regularly on another scleroderma board.  At first she was met with such hostility at the mere mention of AP, that most people would have given up trying to convince people that didn't want to listen.  Slowly, more people wanted that information and felt it sounded like a reasonable alternative.  Now there are lots of people on AP on that board and doing quite well, I might add.

If any of the so called SD specialists wanted to do a little informal survey, they should read that board and follow the progress of those improving and those not.  The proof is in black and white and does not take a medical degree to figure out.

I thank you from the bottom of my heart for all you do…….kim

[amyid]

Cheryl and Jess,

Your post and update are wonderful.  Cheryl, I admire your tenacity as a mother.  Your “mama bear” instincts not only kept your child alive, but allowed her to thrive.

I can't express enough gratitude to you.  The fact that you continue to advocate for others and reach out to support and educate us about AP shows that you are not only a great Mother but a wonderful human being!  I appreciate how your calm words and advice have helped me get started on this road back. 

Thank you for sharing your and Jess' story with us.  Continued health and happiness to you both!

Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[saralambiecat]

Cheryl,

Thank you for the update, I was in tears as well. I can hardly put into words what it means to hear of your daughter's success. It definitely gives us other Moms hope! You are such a blessing and were a much needed encouragement when I came to the site, thank you!!

Lisa

[lvento27]

Cheryl,
Your story brought tears to my eyes.It must have been awful seeing Jess so sick. You are a truly special person for doing all that you do to help so many people.Jess is fortunate to have a mom who is so dedicated .I am so happy that she is doing so well and I know she will continue to do so because of your determination .I am so grateful to you for all your encouragement, patience and knowledgeable advice.I always enjoy speaking with you because of your positive attitude So thankful for RBF!
Lisa

[MaryP]

Cheryl, I'm thrilled for both you and Jess.  I read all your posts, especially in the beginning, as I started AP about a month later than Jess.  I just *knew* in my heart that this was the way to go.  I'm not a-ok…yet, but, I'm light years better than I was two years ago.  Jess has a great mom, and we are lucky to have you here, both asking and answering questions.

[Author]

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