Going to see Dr. S on April 26th!!!

[luvmywonderfulkids]

Thank you JB — did you initially start with Dr. S and then continue at home?

Sue

[JBJBJB]

[user=1274]luvmywonderfulkids[/user] wrote:

Thank you JB — did you initially start with Dr. S and then continue at home?

Sue

Yes.

[A Friend]

[user=1274]luvmywonderfulkids[/user] wrote:

I believe that we are going to take Ryan to see Dr. S soon as he feels it may be time for IV's. Does anyone know if he will allow our pediatrician to continue the IV here or do we always have to go there? The insurance we have does not allow us to go out of state so I am hoping that we can continue treatment here. Thank you!

Sue — Ryan's Mom

Sue,

Dr. S in Ia. has long been known to work with patients in answering questions, and helping patients in any way he can.  I also know he works with their home physicians.  (I'm usually more concerned about other physicians working with him.  But, Dr. S is a “prince of a man” and I'd bet the farm that he will do his best for you. I believe I've even heard of him writing RXes for IVs to be given by home health type businesses.  Good luck to you and Ryan for getting whatever is necessary done.   

AF

[luvmywonderfulkids]

Dr. S is absolutely wonderful. He always writes us back. We are so confused right now because rheumy wants to put him on Enbrel and Dr. J in CT for lyme said that we should and Dr. S says we should not. I am waiting for an email from Dr. S now to see when we can go there.

Does anyone know if mycoplasma pneumonea can cause the same issues as mycoplasma fermentis? Dr. J said they do not and because Ryan's mycoplasma pneumonea was a past infection it has nothing to do with what is going on right now. Please help!

[LisaB]

Newbie here, recently diagnosed with dermatomyositis.  I've gotten a list of docs in the NJ/NY area and was wondering if anyone living in my area has had a good experience with a local doc.  Also wondering which doctors anywhere are considered the best and have the most experience with this protocol.

Also, which labs are recommended for mycoplasma testing?

 

Thanks

[Kim]

Hi LisaB, and welcome to the Roadback forum.  I don't have any personal knowledge of docs in your neck of the woods so hopefully others will chime in.

Here is a link with a lot of excellent information on the Antibiotic Protocol from rheumatic.org and it lists the labs for mycoplasma testing.

http://www.rheumatic.org/faq.htm

Take care…….kim

[Maz]

[user=2447]LisaB[/user] wrote:

Newbie here, recently diagnosed with dermatomyositis.  I've gotten a list of docs in the NJ/NY area and was wondering if anyone living in my area has had a good experience with a local doc.  Also wondering which doctors anywhere are considered the best and have the most experience with this protocol.

Hi Lisa,

Dr W in Summit Heights, NJ, is used by a number of folk here. He's a rheumy who knew Brown and will use both combination orals and IVs when indicated, but when making appt, one needs to state specifically that they are coming for “antibiotic therapy for dermatomyositis.” For some reason, the office likes to know in advance. Being a conventional rheumy, too, if other supportive meds are needed, he is a one-stop kind of doc. As I understand it, Dr. W. is a serious guy and is very thorough in his work-up. Some folk really like him and some take a while to feel comfy with him. Either way, he's generally well-regarded. He should also take most insurances, which is a bonus. 😉

Peace, Maz

[Author]

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