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I am writing for help for my brother. He has Scleroderma and has asked all his dr’s for ap but non are willing to administer it. I am having trouble finding drs to help my brother. He is getting depressed and giving up. Any suggestions would be greatly appreciated.(I received dr lists have not found anyone who does ap in Ontario)
Hi Laurie,
Sorry to hear about your brother, Laurie.
When you called the docs on the AP list, did you ask the receptionist? Sometimes they don’t understand the patient vernacular, “AP.” Or, was it because you couldn’t reach any? We haven’t had any recent feedback from anyone in Ontario (for years), so wondering if any docs have retired or moved offices.
An alternative would be to travel to NY state, if he’s up to the drive. I think the borders are open to the fully-vaccinated now. There is one doc in upstate NY who has treated some rheumatic patients. A few from Ontario have also flown to an experienced doc in the US.
Hopefully a fellow-Ontarian will chime in for you. Dr. A. in Ottawa was very experienced and treated numerous patients, but last I heard, her books were closed. Has your bro tried asking his dermatologist? Some folk find help that way.
If I can help with further lists, please feel free to private message me through the forum system.
Thank you for your reply. Some dr’s try to push other therapies. I am not sure my brother asked the dermatologist ( I will confirm with him) but he did ask the specialist in Toronto and (what he refers to as ) his scleroderma dr ( close to his home) as well but they say they can lose their license if they offer this protocol. My brother needs to start this soon as his health is deteriorating. The doctors just keep giving him medication that makes him feel worse. He eventually goes off them all as they take his quality of life away as well. It is horrible that our health care system will not try something that has worked for others, is readily available and inexpensive. The meds he takes now are toxic, expensive and do not help him at all. I printed a list of doctors from New York tonight. I will try calling to see if maybe we can get my brother an appointment.
Hi Laurie,
I just sent you a PM and you should get an email notification to click directly to it. There are also instructions about how to send others a PM in the orange announcement threads above, if you have trouble.
Hi Laurie, I searched Canada in the Road Back Facebook group and a doctors name came up from a post from 8 months ago – I did not read all the posts so there may be more info. The Facebook group may have some other resources for you. I went to a functional medicine doctor in the remote area where I live.
Oops it look like the name that came up is a Dr A, likely the same one MAZ mentioned above. But the Facebook page is still another resource.
Hi Joan
I think I am the last person on the planet without Facebook 🙂
I am having a few issues figuring out this site but slowly managing.
Thank you for taking the time to write to me, I truly appreciate you and Maz for your help.I was reading an article about a dr. (who has retired) on this Roadback.org website. I pasted an excerpt from his story. My question is, does anyone know if he ever launched his website? I did Google to look for it but I had no luck finding anything. Here is the excerpt:
“Thank you to Road Back Foundation for your efforts to get the word out. I am currently retired, but I am working on a website to launch next year, the goal of which is to help people achieve the best health possible in the most cost-effective way. The medical system is badly in need of competition for methods of treatment, which would also help to reduce treatment costs. Sometimes simple things can solve big problems.
Francis M. Powers Jr., M.D.”
Hi Laurie;
I live in Ontario and was a patient of DR A.I don’t think she is doing AP anymore as the Gov. was causing her major headaches.A client died mainly because she did not follow doc’s rules,her family complained and the whole mess went to court(I think) So the Gov. cracked down on her.This is rediculous as there is not one med that is approved for SD.They are all “off lable”.Before finding her I just went to a farm supply store that sold tetracycline for animal use..It is the exact same thing as humans take and I have a big enough medical background so I was not worried,this was 25 years ago so I don’t know if it is still possible to get Tetra over the counter.I did respond to it and after a few months I told my sweet GP what I did.He gave me a prescription for Mino providing I did the studying and report back.Any chance that you might find an integrative doc?.Just make sure he/she is open to AP before running around.Most docs will tell you that SD is not caused by an infection but knowing what I do from veterinary medicine I know that an infection can knock down the immune system so much that you can come down with whichever disease you are genetically predisposed to.On the plus side the Tetra family and Zithromax can attenuate Interlukins and Transfer Growth Factor 1B.We deal with IL 1 and 6 that cause the inflamation as well as TGF1B that brings on the fibrosis.I bet your doc does not know of anything that will counter act these 2 devils.If your brother has Raynaud’s he could try Nattokinase (amazone) as it breaks up the Rouleaux that damages fine vasculature.Digestive enzymes got rid of my slow motility that causes Gerd within a couple weeks and it has stayed just fine for over 16 years.I found the best was a cheap one made by GNC,240 capsules for 30 odd $.This sure beats expensive meds .Hello Lynne
Thank you for your post. We haven’t tried purchasing meds directly, even if we could We have no medical training and I did read that wrong doses can do more harm. My brother tried his scleroderma dr in Toronto, his family doctor and his rheumatologist but none willing to try. He asked his dermatologist but he hasn’t given him an answer yet. Unfortunately I do not understand your post about growth factors and all the technical terms you used. I am having trouble understanding all of this. My brother does have raynaud’s and his hands are also very large now. Do you still take Mino? And, is that the one that everyone is having a difficult time sourcing(the original med)? I will tell my brother to ask dr for these other meds
Hi Laurie;
Yes,I am still on doxy.The original minocin no longer exists.For a while Canada has a Teva mino that was very good but they quit making it and it was replaced by Apotex(APO) which caused my SD to come back in a few months.We can get Teva doxycycline here and I found it was just as good as the mino.I only need one tablet every other day to keep my remission.I have a library of info on Interlukins and TGF.If I posted some of the really good stuff here it would take way too much space. so I could e=mail it if you wish.Just ask me for my email.In the mean time you can start to educate yourself by doing a little Google.Something like this….what interlukins are involved with scleroderma or what is TGF 1B or how is TGF 1B involved in scleroderma.
I can bet that doc does not even know about Rouleaux but he should be aware of digestive enzymes.You can get Artimisinin on Amazone,digestive enzymes at your local GNC store and Nattokinase on AmazoneHi Lynne
Yes I would appreciate any info you could send. I will definitely Google what you wrote. I have read lots of information and I have to admit it’s very mind boggling, and quite frankly scary. I have been on sites for trying to understand this disease and I have read about trials of drugs. Very difficult to understand but I keep trying as I hope to help my brother. I find I have to take breaks, it’s quite overwhelming.
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