Hello! An introduction and some scleroderma + lyme questions

[torontogirl]

Marg,

Thanks so much for your message! Yes, the autoimmune disease clinic at Mt. Sinai is where I am going to be seen in a few weeks. I am SHOCKED that they allowed your daughter to try AP for her RA. My impression was that the conventional medical clinics would not be supportive. How did she manage to get that treatment through the clinic? That’s interesting. I will be seeing Dr. L at the scleroderma clinic there. Maybe I’m allowed to mention his full name as he’s not an AP doctor? I’m not sure. 😉

I also have positive Rheumatoid Factor. I guess my disease is not a totally straightforward manifestation of scleroderma. I have no other symptoms of RA though, and I’ve heard the RF can be elevated in other autoimmune diseases.

Hmmm, now I’m wondering if I should wait for my appointment and ask Dr. L about prescribing AP. I wondering if he’d be open to it in conjunction with more conventional treatments.

I’ve also heard that low iron is common in many chronic diseases. I just found out that my vitamin D is quite low too despite taking supplements. I guess it all goes with the territory.

Zoe

@marg wrote:

HI Torontogirl,
So good you’ve found this site! My daughter also lives in Toronto and is in remission from scleroderma and RA. The scleroderma was only hardened , shiny skin patches on her stomach and one upper arm, which really never progressed, so she didn’t take any meds. Some years later when she came down with RA it was sudden and very severe.

We knew about the Road Back as a result of research re. the scleroderma and she was lucky enough to have a rheumy at the McDonald Centre for Arthritis and Autoimmune Disease, connected to Mount Sinai Hospital, who was willing to let her try AP for the RA. Perhaps because she started AP early on, results were quick and effective! We were surprised to see the SD lesions shrink in size after about a year of AP for her RA.

I think I know the DR. you are referring to, the hydrogen peroxide etc. Although my daughter ended up not contacting him, our extensive research led us to the same concern you have – that financial gain seemed to be a big factor. This is just our opinion, not substantiated of course. But I would echo those who suggest that Minocin could be really helpful.

My daughter is now very well and I wish you the same good results.
marg

[marg]

HI Zoe,
I replied to your other message. to Canadians – but in answer to how we got the DR to prescribe – I think there were a few factors. Mainly I think the young, female rheumy was open-minded and not intimidated by a patient who had done research ( which is not the case with all doctors…) LOL

I accompanied my daughter to the appt. when she was going to ask for AP. I had run off literature from the Road Back and had it clearly in hand – as well as being quite ready to help make a case for AP.

As it played out, when my daughter explained what she wanted, her Dr. said, “Well, it’s your body”. She was clearly not optimistic. She wrote a scrip which was far too much for my daughter ( though my daughter did try to use it as written and ended up in agony). Once she reduced the amount and went to pulsing, results were almost immediate.

IN any event her Dr. said to come back if she got into difficulty ( Ie the Ap didn’t work). However my daughter returned to the Dr. at her 3 month appt. and the Dr. was astounded at her progress.

It’s hard to say if having someone with her at that critical appt., who seemed in support ,was a factor, or if her rheumy would have done the same thing anyway. I do think if you are well-informed and state firmly what you would like to try, it can be helpful. the biggest drawback was that the rheumy was not “AP literate” but for us we managed. Info on this Board was certainly helpful.
marg

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