I have the list, but I can't get in touch with an AP doctor

[PetRescue]

Hi everyone, I've been doing some thinking and would at the very least like to see an AP doctor. I would like to see “the best”- Dr.S in Iowa, but I have emailed and called him with no response.

I also contacted another doctor from the list and this is the response I got:
“I do AP therapy but can recall only one severe scleroderma case, and he was not helped by it. I am willing to try if you wish. …We can use the ANA as a guide to any possible emerging response.”

I'm not so sure he is right for me. He doesn't seem too convinced in AP therapy and that's not a good thing.

I am willing to travel to Iowa to see Dr.S, but how do I get in touch with him? Any suggestions for other doctors I can see?

~jen

[mkbeeliever]

Dr. S will answer your email, just give him a bit more time.  I have never called his office, so I'm not sure what's going on there.  Make a pest of yourself if you must, call every day and don't quit.  Several people here see him and I'm sure they will chime in and give you their experience with contacting him.

Good luck,
Blessings,
Michelle

[Maz]

[user=2168]PetRescue[/user] wrote:

I would like to see “the best”- Dr.S in Iowa, but I have emailed and called him with no response.

 

Hi Jen,

Dr S is semi-retired now and I understand a bit of a “snowbird,” traveling off to warmer climes when he can, so he takes a few weeks off here and there during the winter/spring months. He'll get back to you upon his return, I'm sure.

There might be someone here who has been to see him recently…I think Sharon was just about to go up to him for IVs…so she or someone else here may be able to give you some feedback on his schedule right now. He may be there, but just tied up with patients or backed up with emails. He's still in high demand, but we're just grateful he is still seeing rheumatic patients and didn't go into full retirement. 😉

Hope he gets back to you soon!

Peace, Maz

[PetRescue]

Thank you for your suggestions. That was the thing, I didn't want to bug him too much as I know he is semi-retired. Yes, that is kind of him to not retire to continue helping us! But I did call him again this morning and spoke with him about my case. I have an appointment at the end of April!
And he said I could stay on the Minocin while trying to get pregnant and then when I find out I am pregnant, take me off! YEAH!!!
That is the best news ever! Now, I'm not sure my OB would agree, but we'll see how it goes.

I was also curious what he thought about my diagnosis-and if I have scleroderma. He said it doesn't really matter if I do or not (I concur), but I am curious as to how we will know if the treatment is working. I won't know if I am getting better, because the only symptom I have is the Raynauds.  But again, it doesn't matter, I guess I am lucky that my ANA's were caught so quickly, that I didn't have a chance to develop it.

One other question-what are the typical costs with seeing him? I know it's probably not appropriate to discuss in a forum-but he just said a few hundred dollars. Does that mean $300 or $500? And does he write a prescription for Minocin or give the Minosin to me? I know my insurance will not cover name brand drugs, but I am willing to pay out of pocket from Canada if I must. Should I try the generic first?

Also, sorry for all the questions, it is just a case of information overload and I did not go to medical school, so I assumed my doctors would know all this! Should I get tested for Lyme? I don't really have any symptoms of Lyme, but you never know. Is there a study I can print for my PCP to have the test done at the correct lab? Or should I get it done and pay for it out of pocket? What about mycoplasma? I have been reading so much about all this stuff and doing pet rescue, I have heard of all these organisms and have had pets that have had most of these things they talk about. I definitely have been exposed to all these things.

Why is it that we have to be our own doctors? I am reading a book right now from a cancer surgeon about patients and their recovery. He says that the patients that have the best recovery are the ones that question their doctors and take charge of their care. I think that is the case with every one of us!

You are all the best…thank you for taking time to help me on my road back!

~jen

[Cheryl F]

[user=2168]PetRescue[/user] wrote:

I didn't want to bug him too much

 

BUG HIM! 

He will totally understand!  Be persistant, it may be frustrating, but when you are well, AND YOU WILL BE WELL AGAIN, you will take pride in how you handled this and didn't give up!  I know it is hard and you likely do not have the energy to keep pestering Dr. S, but it will be worth it.  Everyone who has seen Dr. S has felt that they received very good care!

Keep it up, you will make it!

Cheryl

[lynnie_sydney]

[/color]

Aint that the truth! I think it's just a paradigm that we've got ourselves into – that we leave our health care decisions to our doctors. And maybe that has alot to do with the fact that we dont take a great deal of interest in our bodies – which is where we live our whole lives. We're much more interested in our houses! There are many here who will tell you that one of the first changes on their road back was to begin to take charge of their own health and wellbeing, starting to educate themselves so that they could question their doctors, eventually using doctors as consultants with expertise but always remaining the ultimate – and informed – decisionmaker. Works for me! 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)

[marg]

Jen,

I'm SO GLAD you're seeing Dr. S and I look forward to reading your posts letting us know how things are going. What good news!

Marg

 

[kasdance]

Hi there,

Dr S is in Florida. I called him a few weeks ago and he will do phone consultations as well as respond by email. This is how i am being treated presently
~Kristin

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