Just FYI

[BestLife27]

Just FYI – I visited a scleroderma specialist at UCLA last week and inquired regarding the AP and was point blank told that “it doesn’t work”. When pressed as to why it has put so many people into remission, the response was “there is no proof that it has” along with some other junk about double blind studies etc. I guess everyone on this site is being untruthful 😉 After being diagnosed with this stuff for 2 years, I’m going to start AP. Just very sad that these rheumatologists have been trained to automatically go on the defensive when asked about this therapy and the only assertion is that it doesn’t work – an insult to our intelligence. Glad everyone that it has worked for went into spontaneous remission no thanks to AP – ha ha. So ridiculous. So proud of everyone on this board.

[Lynne G.SD]

Well kiddo,we all got the same story.I started AP 18 years ago,reached remission in year 2 and still doing well.Because our ANA will always show that we have SD the doc told me I am not in remission.The Jerk!!! Thank God for my dumb family doctor that I could train into submission. hehehe

[Maz]

Dear BestLife27,

Nice to meet you and glad you found us here! Have you read “The New Arthritis Breakthrough” yet? Funny story in this book that yours reminded me about where a lady had lupus and went to see Dr. Brown but had trouble getting her dermatologist to send her records to him at the National Hospital, because he said Brown was “a quack.” This lady told the dermatologist that to the contrary Brown had helped everyone she knew who’d been to see him and that “he even cured a woman with scleroderma” (referring to, Cathryn Loftis, from Alabama, whose story is covered in the book). The dermatologist laughed, saying “Nobody has ever cured scleroderma. If Dr. Brown helped your friend, then she didn’t have scleroderma in the first place.” The lady with lupus then said, “Maybe not, but ten years ago you seemed to think she did. You were the one who diagnosed her.”

[Luck20]

Yeah, heard the same things a couple times. Good thing I’m stubborn!

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Luck20]

By the way, I’m tired of hearing about ‘double blind studies’ too. Its very frustrating. These diseases are too aggressive to sit around and wait for the perfect study to prove anything. We just don’t have time to wait and it’s appalling anyone thinks we should wait.

Sometimes you just need to go on faith. You need to believe in a treatment and your body’s ability to heal. Someone can sit all day trying to convince someone of the infectious theory or that AP has worked, but if their set on not believing, what can you do?

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[BestLife27]

Thanks Lynne, Maz, and Luck20. Nice to meet you all and thank you for all you have done and continue to do for this community. Lynne – yes – thank goodness for the dumb MDs – without their stupidity, no one would be in remission. Maz – yes – I have read the book (over 2 years ago) and forgot about that story! Luck20 – I don’t believe in double blind anythings that are funded by pharmaceutical companies. My story is that I began pelletized Minocin in June 2017 shortly after diagnosis until December 2017 when I could no longer obtain it. I wasn’t on it long enough and was in such early stages of the disease process that I was unable to know if it helped. Fast forward to today, my Raynaud’s is worsening throughout my body and my skin texture is changing – not thickening or hardening but just more “slick”. My skin score according to UCLA is still 0 but I definitely notice changes in the texture and lack of elasticity especially on my face and transparency of my palms. My blood vessels hurt and my body aches everywhere and the left side of my upper body is very rigid along with what I believe is fibrosis occurring in my mouth and jaw on that side. So, I believe it’s time to re-start the AP though I’m unsure as to what to substitute for the pelletized Minocin. Any thoughts on that would be appreciated – I’ve read multiple threads regarding various generics but am unsure which one is best. I’ve been on low dose naltrexone for the last year which I believe has helped with inflammation and possibly slowed this process but I can tell things are progressing. I’m a former attorney now in my early 40’s with an amazing pre-teen daughter whose a soccer superstar that I’ve got to be around to see in the 2028 Olympics so it’s time to do something. Dr. Brown’s beliefs make sense to me regarding the origin of rheumatic diseases. I believe that mitochondrial dysfunction plays a role somewhere but likely due to an infectious cause coupled with an overburdened body. I have no family history of autoimmune disease but my immune system crashed after the birth of our daughter. I had mono when she was almost 1 (and in my 30’s which was odd), strep throat annually thereafter and caught every other infection that was going around her preschool. I didn’t think anything of it at the time but clearly something went awry. I developed a horrible dry cough a few months before this stuff onset and when it really hit, I thought I had the flu – just no energy and felt like I was dying. I still don’t feel great by any means and some days are better than others. There is much more to my story over the last 3 years for another time but I just wanted to formally join after following this board and silently applauding everyone here for their courage over the last few years. I’m just keeping my fingers crossed that AP will work for me and force this stuff into remission. I’m lucky (I guess) that it was caught so early but I have done nothing since but be worried about my family and be terrified of being in this body. I’m going to need the help and support of this community along the way but I’m so grateful for the intelligence and bravery of the people here. I’m just frustrated and more so disappointed by the rheumatological medical community especially with regard to their position regarding AP – but I know it’s no surprise to you all. They must be smarter than that and I just keep thinking that if I had practiced law the way most of them practice medicine, I would have been disbarred long ago. In discussing the AP with UCLA, I even referred generally to CherylF’s daughter’s case as a “[now] physician that went into remission on AP” and was told that they were aware of the case but that AP wasn’t the reason for remission. Unbelievable – I bet they’ve never spoken with CherylF or her daughter. I could care less about their position but it is both an insult to everyone that has had success and a disservice to those who are unaware that AP exists as a viable option. I know this is same song second verse to you all. Sorry for the long post but I appreciate your responses and support in starting this journey and thank you again for maintaining this community. Hoping mine will be another success story.

[Luck20]

I’ve had great luck with a chiropractor that uses a professional grade cold laser on my fingers with poor circulation. I was ready to look into vasodilators and now I’m thinking that might not be necessary! My fingers still feel colder than they used to but their seldom changing colors:)

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Cheryl F]

BestLife~

Man your post brought back some PTSD. My daughter’s rheumatologist told me that AP “is a hoax” and “he would have no part of it.”

You may already know this, but my daughter did see one of the scleroderma specialists at UCLA when she was a student there. It was Dr. K. She looked at my daughter’s nail beds and said she definitely has SD. She knew the treatment my daughter was on and said, “we don’t believe in that treatment, but something is working so I would not tell you to stop.” She was also very concerned that my daughter go get all of the diagnostic tests redone, PFTs, echo, CT, my daughter declined, she knew she was well and did not need these tests.

An (I think) funny side story. last night while this thread was developing, my daughter was down in LA to attend a wedding of her longtime friend and roommate. She has known this woman for 8 years now. They lived together for 3 years. This friend is, wait for it… a rheumatology fellow at UCLA. She has known my daughter well for more than 8 years, lived with her for 3, and she has NO IDEA, about her scleroderma.

Its all very frustrating. I will say, on behalf of these physicians, they are highly indoctrinated into the “autoimmune” and “body attacking itself for no known reason” paradigm. Now the arrogance that goes along with that, hearing people, credible people, say that they went into remission, how does that not somehow, eventually ignite some curiosity to explore this treatment. One of my best friend’s mother’s died of scleroderma at the hands of the doctors at UCLA. I had just learned the name of the diagnosis about a month before, I sent her the book, but it was already too late, she never got to use AP. This is just to say, I KNOW the harm that the denial if this treatment has caused many. I know people who found AP “too late.” I KNOW, that could’ve been me, learning about AP too late. I know. That’s why we, Maz and I, have hung in as volunteers with RBF long past the time we want to retire. We know that this treatment and the info gained in this website and discussion forum literally saves lives. I wish you every success.

Re- minicin, irs not available, get the generic. My younger daughter started taking generic minocin in March 2019 for a different type of scleroderma (diagnosed by SD specialists at Stanford)
it seems to have halted the progression. Those doctor’s too said AP is not a proven treatment and that sometimes the scleroderma just stops on its own. I just can’t argue with these people, I move forward and make my own choices.

Best~

Cheryl

[Luck20]

Thank you Cheryl and Maz for hanging around as volunteers. Lynne too. I know the tendency is to get well and go off and enjoy your life but your efforts are much appreciated! You do save lives. Thank you so much!!!

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Lynne G.SD]

Well my darlings I just have to tell you this.A few months ago my sister was operated on her brain for cancer,the worst possible one calle Neoblastoma.She has a doctor in Vancouver who has her on a modified AP protocol,mino and diflucan and a couple other things that I don’t remember and am too tired to look up at the moment.She is also on cannabis,high CBD and moderate THC along with green cannabis juice and a bit of chemo.2 days ago she phoned from the hospital where she was having scans and tests.At the moment there is absolutely no sighns of cancer.She was so happy that she phoned everyone in the family
My brother with pancreatic cancer had 2 rounds of chemo and a lot of pot and that protocol is really working as 3 years ago they sent him home from the hospital to die.

Best Life, you should read these links and maybe print out the onesyou can wave at your doctor once you are well again.It’s a post I made to Mandy on the Inspire site some time ago.

Not sure if I added this one to the list…
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3386503/

Hi Mandp;
Mino and or other antibiotics certainly is the reason you are doing well.Here are a few links that will explain why/how.Mino/doxy/clindamycin/Zithromax will work IF you have an infectious cause,many do but your average doctors certainly will not take the time to find out.If you have an infection you will know because you will get a Herxheimer’s reaction.Everyone else will react well to just mino/doxy because it controls the Interlukins and Transfer Growth Factor -1b
Links on Interlukins involved in SD… our worst are 1,mostly 6 and 8 but 10 is your friend

Primer on SD and how Mino works as a very good anti inflammatory,not as an antibiotic.New drug hopefully to be here soon called Resunab will be a super duper anti inflammatory ,an artificial cannabinoid .It is becoming clearer every day that inflammation is the likely cause of all disease and getting it down is of most importance to feeling better.This is one of the reasons that good diet is so important.
Those of you that have a good science background will be able to understand all these links.Others will have to read slowly more than once but you will get the gist of it.I have years of medical training but still have to shake out my brain after reading too many

https://www.sclero.org/scleroderma/causes/interleukins/a-to-z.html NO1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3226076/ No1

https://www.news-medical.net/health/What-Does-Interleukin-6-Do.aspx NO1
https://www.ncbi.nlm.nih.gov/pubmed/8315568 NO1

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC408350/ No1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136898/ No2

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2787259/ No3

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136898/ No4

http://www.sciencedirect.com/science/article/pii/S0022202X15425217 NO5 Transfer growth factor/tissue factor

http://www.pnas.org/content/93/24/14014.short this refers to NO4

http://thorax.bmj.com/content/early/2011/10/24/thoraxjnl-2011-200499.short refer to NO4

http://europepmc.org/abstract/med/23870534 refers to NO1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5075140/ refer to NO1
https://www.degruyter.com/downloadpdf/j/infl.2013.1.issue-1/infl-2013-0002/ infl-2013-0002.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167643/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785020/
MINO/DOXY

https://www.hindawi.com/journals/mi/2015/329418/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651660/
https://www.ncbi.nlm.nih.gov/pubmed/22306153
http://medcraveonline.com/JNSK/JNSK-02-00073.php
http://journals.lww.com/theneurologist/Abstract/2017/07000/Antineuroinflamm ation_of_Minocycline_in_Stroke.4.aspx
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5548869/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5075140/

NEURO

https://www.sciencedirect.com/science/article/pii/S0278584616303256

https://jneuroinflammation.biomedcentral.com/articles/10.1186/1742-2094-5-15

For PAH:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167643/

https://www.ncbi.nlm.nih.gov/pubmed/19555562

https://www.ahajournals.org/doi/full/10.1161/HYPERTENSIONAHA.118.10934

http://www.ncbi.nlm.nih.gov/pubmed/17713325

For Eyes : https://jamanetwork.com/journals/jamaophthalmology/fullarticle/419224

FOR OSTEO ARTHRITIS

https://www.ncbi.nlm.nih.gov/pubmed/12082286

https://www.ncbi.nlm.nih.gov/pubmed/8849255

http://iv.iiarjournals.org/content/28/1/21.full.pdf

https://diabetes.diabetesjournals.org/content/54/5/1559

INFLAMATION is inflammation regardless of where it is,brain,finger,eyes etc

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