Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Seeing Dr. Ebringer

I'm curious about seeing Dr. Ebringer (re: dx). If you are not a resident of the UK, is it possible to see him at his Rheumotology Clinic at Middlesex Hospital? Does he have a separate private practice where he sees patients?

What might it cost? Has anyone done this? Was it helpful to you?

Thanks so much.

Hi, Faith:

Professor Ebringer has retired, but always likes to talk with AS patients. I doubt he would be available for a formal consultation, but if we were able to sponsor another lecture series I'm certain he would give You his full attention as he has done with so many others at the two events we already had. The Middlesex AS Clinic has closed.

We have Ebringer's attention through promoting his work and reducing theory to universal practice, and he has agreed to answer questions from members; we could possibly get You in contact with him.

It was George McCaffery who had left England and resettled in US then became a patient of Ebringer's, certainly to his great advantage; we can only speculate what otherwise would have happened, but George is busy having fun now and plays golf daily.

Regards,
John

Hi John,
Will Dr. Ebringer communicate thro e-mail. Can his e-mail addresse be given to me.
Regards.
Jay

Hi, Jay:

He has not answered my last email, but eventually he does respond, but it might be better if we got together and asked him a point-by-point series of questions. Failing that, if someone wanted to speak with him via telephone, that could possibly be arranged.

HEALTH,
John

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George is busy having fun now and plays golf daily

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Hello John,

Is it because being a patient to Dr. Ebringer has helped him to greater extend to understand and manage this disease? And if so, does he achieve this through some other ways and means of treatment which may not have been discussed here more often…

I’d like to know because I think playing Golf daily must be very challenging let alone to swing the body to its full potential, it’s often awkward and difficult to keep spine straight and flexible to have the mood for it…

Regards,

Thanks John. My interest is in getting an accurate diagnosis. I don't want to waste time with a rheumatologist who does not fully understand the problem, with all due respect. It therefore seemed logical to go to the premier expert on the disease and its treatment!

I appreciate your support and willingness to help me connect if I wish, but, aside from my wish for a dx, I don't have any questions or need to speak to or contact Dr. Ebringer directly. I feel I'm getting all I need from this forum in terms of information (have read all the technical papers) and support.

My GP, who practices functional medicine, is very much behind me. He understands that AS can appear in any joints (not just the spine) and that each person can be effected individually. He is also aware that it is connected with a bacteria and with IBD/IBS. As soon as I (finally) told him I am HLA B27 positive, he realized it was an important missing piece of information.

I don't see a referral list for rheumy's on the site. If I would like recommendations for one in a particular city, should I just post the question and see if anyone responds?

Thanks again!

Hi John,
Thank you. I think I can attempt sending an e-mail and wait for his response. It is worth I feel. would you not mind forwarding his e-mail address. You can PM me if you want it to be confidential.
Regards.

Jay

Hi, petra:

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Is it because being a patient to Dr. Ebringer has helped him to greater extend to understand and manage this disease?

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George was very fortunate in finding Professor Ebringer those years ago, and for many years now has used diet exclusively to control his AS. Certainly, about the same year my own ESR was >100, his was also, but the difference was he became a patient of Ebringer's and I was "treated" by eminent rheumatologists here in US. Over ten years later I was unable to turn my head from side-to-side and could not look up and had a sever hunchback, but George has near total articulation.

Again--DIET ONLY and not NSD most of that time, but Ebringer's LSD and perhaps SSZ in the beginning because that what was universally prescribed at the Middlesex AS Clinic.

You can read his story, excerpted from Carol Sinclair's book, in the "success stories" on the NSD Forum.

HEALTH,
John