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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
Steve~
Hello and welcome! I am glad that you have come to the discussion forum to interact with others and see how they and their physicians have implemented AP.
My daughter started with 3 days of the IV clindy. Many SD patients I have interacted with have gotten a good kick start with the IV clumsy treatment. So, possibly see if there is any way to access that treatment. I know it’s very difficult.
When my daughter started AP, she did show good improvement from the 3 doses of IV clindy and then 100 mg 2x daily, everyday of minocin.
Even though she was showing rapid improvement, from learning what others were doing, based on their physicians, I decided that we wanted to add 250mg of azithromycin, M-W-F. Later she did multiple 5 day courses of Flagyl. This was 13 years ago, she remained on this protocol for the better part of 9 years, tapering her doses significantly in the last few years that she was taking this protocol.
I hope this information helps you and your MIL to determine if there are additions or modifications to her treatment.
On a completely different avenue, we had one forum participant who had scleroderma and did AP and saw a good deal of improvement, but incomplete. As she explored various avenues to consider for treatment, she came across a non prescription anti-parasite protocol. She started this protocol and she began to see parasites leaving her body. After a couple months she saw significant improvement. This is just to say that some patients need to continue to explore the potential underlying pathogens and consider treatments that can work synergistically with the AP.
Best~
Cheryl
Although somewhat misshaped from the initial damage, one fingertip has scarring and a dent, Jessica’s nails are normal. String but not thick.
~Cheryl
Linda~
I have read all of his books. His research and theories are very interesting and thought provoking.
You might also be interested to watch this recent interview of Dr. Cantwell.
Best~
Cheryl
Luck20~
You said, “this is a perfect example of how these diseases are not one size fits all.”
I think this is a very important point, and related to how patients who undertake AP and potentially a combination of other alternative medicine protocols must be their own advocate. They must be the director, quarterback, conductor, of their therapy. Even the best doctors cannot keep track of your symptoms and how they relate to med or life changes. Even in allopathic (one size fits all) medicine, you need to be the conductor, the various specialists aren’t able to see your individual “big picture.”
Good job Pinkmoth to keep track of all this.
Best~
Cheryl
Pinkmoth~ thank you for the suggestion. I think I want to do this test on myself and my husband as well.
Cheryl
Thanks for the recommendation. I am going to try to talk our GP into doing it. Unfortunately, we had a great integrative rheumatologist that has helped our entire family for years. He is currently on extended medical leave, although I am in contact with him via email and he gave me some guidance for her protocol. As I said in a different thread, finding the right doctor to help is very stressful and a lot of foot work.
She has an appointment with the scleroderma specialist at Stanford but that is not until late June. I’ll will just put this out there, my hope is that the scleroderma lesion will have vanished before that appointment and the doctor will just look at us like we’re crazy! That’s my wish, just putting it out there to the universe.
The truth is, in my opinion, the biggest stress about undertaking an AP protocol is finding a doc to work with to RX the antibiotics. 13 years ago we flew to Boston just to get an RX of minocin. From collaboration on this forum, patients can see the protocols used by all of the most experienced doctors. The best think about facing this a second time is that I already knew the AP doctors and had easy access for AP treatment. It really angers me how far patients have to go to access this relatively low risk protocol.
Glad you are seeing improvement. My younger daughter is on almost the same protocol as you are taking. She started antibiotics the day I told her that I saw linear scleroderma on her forehead. So far don’t think there has been any improvement, and possibly a little worsening. I just hope it works as well for #2 as it did for #1.
Cheryl
Also, last year my cortisol was terrible when getting diagnosed and suddenly I was barely sleeping,
In December 2018, my younger daughter (not the daughter with systemic SD) experienced an extremely traumatic event. She immediately stopped sleeping, and after a couple weeks of almost no sleep, he sleep pattern was flipped. She stayed up all night, and slept all day unless she had a commitment.
About 3 months later, I noticed what was likely linear scleroderma (en coup de Sabre) on her forehead. During these few months she also gained a lot of weight, and a lot of it in her belly.
I want her to have her cortisol levels checked but so far haven’t been able to find a doctor will to run that test. I think cortisol is a part of her overall health issue.
Yes, that’s exactly what we did 13 years ago for my daughter. The rheumatologist that diagnosed her offered no treatment and no hope. I turned to the internet and found RBF. I asked that doctor if he would prescribe minocycline, he said, “No! It’s a hoax!”
We flew to Boston, she started AP, and the rest is history.
Luck20, I truly hope that you (or one of your doctors) discovers what you need to heal.
Cheryl
It’s all very concerning. I want to share a story that I think illuminated the problem.
Last year, my husband (RA dx 2008 -completely resolved with AP therapy), who has primary immune deficiency, and he is post organ transplant, therefore on immune suppression medications, was having cyclical severe bladder pain issues. These were the curled up in fetal position type of pain episodes. They did a scope and saw massive inflammation. They did a biopsy and nothing cultured. His infectious disease doctors refused to treat if there was no identified pathogen.
During this time, Maz found one of Dr. Brown’s writings which spoke about UTI issues in rheumatic patients. I then proceeded to beg his ID doctors to treat… Nope. The painful debilitating episodes continued.
I then decided to take things into my own hands and get him antibiotic treatment. The issue resolved and has not returned.
The punch line of this story… A month or so later we saw his Immunologist and told that doc what we had done (started doxycycline), and that doctor said, “I am glad you did that because most of the time these infections are mycoplasma and mycoplasma usually will not grow in culture.”
I replied, “well I know that, and you know that, but why don’t the infectious disease doctors know this?” He didn’t have an answer.
The thing is, mycoplasma is very difficult to culture. A negative culture does NOT mean there is no pathogen. And with some of these pathogens being able to affect the immune system, you cannot always rely on the antibody tests. And with PCR, that test is very specific, you may have one strain that the PCR won’t pick up.
I think if there are clinical signs, such as the massive inflammation in my husband’s bladder, the patient should be treated. Clinical symptoms > lab tests.
Ok, putting my soapbox away now.
Cheryl
All food for thought. I think it is more complex than I will ever be able to wrap my head around. There are theories (I actually think it’s more proven than a theory but I can’t cite the study so I just will stick with theory) that imply that some of these infections actually disable the immune system. My husband has/had RA and the doc did a lot of testing in 2008. In those tests it showed he had no antibodies for infection, past or present. The doc just shrugged off and said, “that’s unusual, you can’t get to be this old and not have had SOMETHING.” So, in 2015, he got an infection that would not heal, after demanding that the doctor order the IGG testing, it showed that my husband has an immune deficiency disorder. These disorders generally come out in childhood, yet this was happening when my husband was 57. But because he doesn’t produce antibodies, no antibody test could be effective at showing which infection he might have.
Anyway, just food for thought. I think that the concept of only treating culture Proven infections is foolish and short sighted. I don’t see eye to eye with most infectious disease doctors.
Cheryl
I personally would debate that statement. That statement presumed that there is a “real” lupus or a “real” RA…. I think Lyme, and other infections cause real rheumatic illness.
Her lungs showed DLCO of 60%. She became short of breath walking about 20 steps or up the stairs in our home. The CT showed some ling fibrosis. She assumes she isn’t having issues based on her regular activities. She is not fatigued even after working 12-14 days, tired yes but not fatigued. After she recovered, she participated in 4 years of college swimming, one year she won a national Title. Since leaving college she continued to swim when time allowed. In spring 2015 she completed the Los Angeles Marathon. She is currently training to run the San Francisco Marathon in July. She is currently running about 40 miles a week to train. I wish she would go get labs, but she REALLY doesn’t have the ability to take time during the workday to go to a doctors appoint, it’s really sad but completely true. When she took a week off when her dad had a liver and kidney transplant and she was ridiculed by her supervisors.
Cheryl
