Newly diagnosed

[Crunkie]

Hi everyone! I am a 58 year old female from Nebraska. In October 2014, I started experiencing hand, feet, legs and face swelling along with rapid heart rate of 140 and weakness. I had an ECHO of my heart and prescribed metoprolol to slow it down. Then had a cardiac MRI. No diagnosis yet. Then went to another cardiologist for confirmation that everything was okay. Then saw an endocrinologist, nephrologist, another family doctor (who sent blood tests to Mayo) and a rheumatologist who said I did not have scleroderma. This all took place from Oct. 14 thru March 2015. Went to another rheumatologist in April 2015 who also got the results from the blood draws sent to Mayo and looked at my skin and said it was definitely an aggressive limited scleroderma with possibility of affecting my internal organs at some point. Yesterday, visited with my rheumatologist and he was not willing to prescribe antibiotics but promised to look into it and I gave him this web site.
I am ready to do whatever it takes to get started on antibiotics and with the help of the good people that give their time to us, I think I already have the name of a world renowned doctor who does prescribe antibiotics and is only 2 hours and 20 minutes away from me. But, I will wait until my current rheumatologist has time to research roadback.og and see what he says. I will keep you posted.

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[richie]

Hi I wouldnt wait –when the very best is 2 1/2 hours away in Ida Grove –this should be your guy—When I was sick with scleroderma -one of the very best was a 5 hour drive –I didnt hesitate for a minute –he became my doctor for scleroderma and he got me all better —-Being 2 hours or so away –its a no-brainer
Richie

[RevereRosie]

@richie wrote:

Hi I wouldnt wait –when the very best is 2 1/2 hours away in Ida Grove –this should be your guy—When I was sick with scleroderma -one of the very best was a 5 hour drive –I didnt hesitate for a minute –he became my doctor for scleroderma and he got me all better —-Being 2 hours or so away –its a no-brainer
Richie

Ritchie,

Should I be seeing a special doctor for my Scleroderma? Right now, my Primary Care is the one who put me on the Mino as I begged him to take me away from the Reumatologist that was giving me meds that was making my vomit all day long. My PC said he would take care of me instead and he is the one who suggested this old protocol. I agreed after reading the book. I take the Mino 100 mg every day, twice a day. And, I thank you for the suggestion of the PB8 that I buy online.

I don’t know how well educated my PC is with R/A and Scleroderma but so far, he has helped me the most. Are you taking another med for the Scleroderma? When I see him during my appts. he basically only talks about my R/A.

Hugs, Rosie

[richie]

Hi Truthfully speaking he might be the best equipped to deal with your scleroderma —He is better qualified than a rheumy to deal withthe other problems associated with scleroderma —my internist {GP] prescribed the reflux med –the Raynauds med and the cozaar to help the kidneys —You seem to be doing well so situation well in hand –He is prescribing the minocycline so all bases are covered !!!!!!!!!
richie

[RevereRosie]

My PC is also an Internist and so far I feel he has done well by me. At first, I was not so sure. I really appreciate you input. I feel so comforted with The Road Back Foundation.

Thanks Ritchie!

Hugs, Rosie

[Crunkie]

Richie and other nice folks who responded,

I was in luck with getting an appointment with this expert antibiotic protocol doctor in Iowa just one month away.
I don’t want to see summer fly by, but I can hardly wait to go to this appointment.

When you folks respond to a post like this, it boosts my confidence and makes me feel great! Thank you!

I will let you know how my appointment turns out. I actually got to talk to the doctor myself. The office would
not make an appointment until I did. Awesome!

God bless you!
Crunkie

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