AP docs in Ontario Canada

[kathygirl]

I was wondering if anyone knew of a doctor that was taking new patients. I have called a couple and they are no longer taking new patients.  I have diffuse scleroderma  and have been on minocycline for nearly 2 years. I do believe it has helped. I have tried differnt immunosuppressants along the way. Cytoxan was like a miracle drug for me but unfortunately when  the doctor had to stop that drug the disease  quickly spread. The doctor is now saying my best option maybe stem cell transplant. I really dont want to go that route. I really wanted to give IVs a chance. Any info that anyone can give me would be appreciated. Kathy

[kathygirl]

I guess I am a little slow I finally saw the topic about requesting information about Ap doctors and sent an email. Thanks Kathy

[Kim]

Hey Kathy,

I'll send you a PM with the AP docs for your area.

Good luck……..kim

[Lynne G.SD]

Hi Cathy;
     Dr.A in Ottawa has a 2 year waiting list and she will have a V.O.N. nurse come to your house to administer them.I did this but found it did not make any difference from the oral clindamycin.    Lynne

[kathygirl]

Thanks for your reply. I have been on minocycline for about 2 years and had such high hopes. Now I know I need to make some changes. In your opinion the oral and Iv worked the same? I would think oral would be a much easier option.  Did you change your diet at all?

I cant believe this disease is back to torment me again. I was doing so well on cytoxin prednisone and minocycline. I am thankful my kids are all adults that can help out. I just need to try to stay positive, much harder to do this time around. Well I guess I better go I have some AP doctor phone calls to make.   Have a great day, Kathy

[lynnie_sydney]

kathy – just some thoughts. If you are on a generic minocycline, you might want to try brand minocin. Many people buy theirs through Canadian online pharmacy http://www.buylowdrugs.com. Brand (or specific generics) can make a difference to outcomes for many. I am also wondering whether it would be worth you having a test for Lyme. Kim will chime in here. Her diagnosis was SD and, whilst she saw improvements on AP, they weren't as marked as they were after she began a Lyme protocol. 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)

[Lynne G.SD]

Hi Kathy;
     I was in terrible shape for soooo long.Ap was not working except to relieve some of the pain and after more than 4 years I was ready to give up.I found a great holistic/AP doctor who specialises in environmental medecine.I showed ger a tiny water blister the size of a pin head that I had for over a decade.She knew right away that it was dermatitis herpetiformis that is caused by Celiac disease.She had me go to the  http://www.enterolab.com site and order the test of my choice.After a few weeks I got the results and they were terrible.She says that just about everyone with any chronic disease has systemic yeast and celiac.We now know that one person in a hundred has it.It took 18 months to totally clear the damage caused by gluten ,then AP kicked in right away.It only took an other 18 months to reach full remission.The only sighn of my SD is tight cuticles and ridged nails.Diet is super important.Now I am only taking mino 100mg every 5 days and 150mg of zithromax once every 15 days.I still have some peripheral neuropathy but it only happens for a few seconds every few weeks.Since I know that nerves are very hard to repair I might never get rid of it  so still supplement with vit B,some extra B12 and lecethin

[Kim]

[user=496]kathygirl[/user] wrote:

Thanks for your reply. I have been on minocycline for about 2 years and had such high hopes. Now I know I need to make some changes. In your opinion the oral and Iv worked the same? I would think oral would be a much easier option.  Did you change your diet at all?

Hey Kathy,

The oral Clindy can be really hard on your gut at high doses which is why the IV is used (to bypass the gut).

Lynnie and LynneG have offered good suggestions about further testing with Enterolab for Celiac and Igenex for Lyme.  It is surprising to find how many of us are testing positive for both of those.  If you've had any exposure to Lyme, and we all have, it requires additional abx to get it under control, so it's a good idea to know if that's a possibility.  Note…if you do follow through with the Igenex testing be sure to get copies of the test, because even if the report says “CDC negative” you could still have Lyme if you have any of the Lyme-specific bands.  You can order the Enterolab kit without a doctor's script, but the Igenex requires a doctor's signature (although you can order the test kit yourself) just the doctor needs to sign the form before returning.

Most of the veterans around here wish we'd done those tests earlier in the process. 🙁

Take care…..kim 

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