Scleroderma Information » Scleroderma » For Socjoc-Re; Meeting
Question:
Thank You !!! soc…@aol.com> – Hide quoted text — Show quoted text ->Please call the Tri-State office at 1-201/837-9826. If you are a member you >should have gotten an invitation. Dr. Thomas A. Medsger jr. is the guest >speaker. Dr. Harry Spiera will be moderating and also heading a panel. I >know >how strongly you feel about the Antibiotics so you may find the meeting very >ineresting as it is listed as part of Dr. Medsger’s agenda. However both >doctors are not advocates of the therapy. >Hope you are feeling well and hope to see you on the 18th Regards Tamara
Response:
Hi Tiara82, Thanks again but that is not my name and I will not post or use my real name online . Thanks anyway. I dont think Trentham will be there . I dont think the company will exactly be open arms!! I know you mean well but I really am not interested in this conference because the speakers are closed minded to antibiotic therapy!! As I said in a prior post I am not interested in " Old World " thinking . I am doing good and maybe you should talk to your rheumy about antibiotic therapy. Afterall it usually can be taken with conservative therapies too!! Talk to your Dr . Hey if it works and the NIH proved it was safe and effective for early RA, then you win!! As far as "Pts on antibiotics would be able to draw one of the guests into an understandable exchange" Well that is not realistic because if the NIH and the Harvard study and the O’Dell study didnt convince them well little ole me wont either !! Thats not my mission anyway!! My mission is to just talk about my story and what is working for me . This way maybe it will help someone else too!! Thanks again for the invite . Have a great time but I will pass. Regards, soc…@aol.com> – Hide quoted text — Show quoted text ->Dear Merri, >I don’t know your last name but the women who stuffed the envelopes said to >make sure that you call as it is possible that you also were supposed to >receive the invitation for the night before She told me that she saw a guest >list that Dr. Trentham had suggested. Even call his office. In fact it just >crossed my mind that he may be one of the evening guests. Also call Marge I >know she received the mail out. >Be Well BTW-If you can’t be there it will be taped. I am doing it on a VERY >amateur basis, but there is going to be an actual photographer with the >proper >equipment donating his time. I would love to see if any of the patients on >the >Antibiotics would be able to draw one of the guests into an understandable >exchange. I personally have considered the treatment but am on so much stuff >already that I would not know what was doing what. If I ever am unfortunate >to >have a flare up I plan to give it a try. Regard Tamara
Response:
Please call the Tri-State office at 1-201/837-9826. If you are a member you should have gotten an invitation. Dr. Thomas A. Medsger jr. is the guest speaker. Dr. Harry Spiera will be moderating and also heading a panel. I know how strongly you feel about the Antibiotics so you may find the meeting very ineresting as it is listed as part of Dr. Medsger’s agenda. However both doctors are not advocates of the therapy. Hope you are feeling well and hope to see you on the 18th Regards Tamara
Response:
Hi Socjog, To begin with I am sorry about mispelling your name. I lost your post as I have my PC set up for everything read not to appear again. To find it I have to mark all read and I am sure you know the deal. As for the doctors being closed minded I am not convinced. The only thing that I am certain of is that both Dr. Trentham and Dr. Spiera have a very good relationship. After CNN’s disclosure some patients decided to stop all of their meds and put themselves on the antibiotic protocol. . I am not sure if I posted this already. What happened was not only did they discontinue medications like d-penn and MTX but they also halted their blood pressure meds and in two cases cardiac medication. Dr. Trentham sent them to Dr. Spiera for help. This to me is an example of why I am so very against the way medical information is handled online. Any media modality is a danger to a patient who is desparate or without insurance. Also In the flyer about the meeting it announces that Dr. Medsger will discuss minocycline the exact wording is "What was all the talk about minocycline?" Also the dinner the evening before has Dr. Trentham listed as one of the guests. This dinner is being hosted, and I asked permission to post this. By the son and daughter of a patient who passed away recently and was mainly Dr. Harry Spiera’s patient however the list of invited doctors is very impressive due to the fact that she survived 36 years of Diffuse systemic scleroderma and was seen by all of them. She was able to live a full and productive life. Also was a clinical psychologist with a practice, plus gave birth to two children after being diagnosed. I had the good fortune of knowing her as she also was head of my local support group. She also had attempted over the years many alternative treatments. Dr. Spiera is one of my rheumatologists and he has no problem with me trying the antibiotics other then the fact that he feels at this point it would be over treatment since I appear to be in remission. If after reducing the amount of medication I now am on and if I flare up then by my own choice I plan to try the antibiotics. If you have diffuse scleroderma and have gone into remission since being on the treatment then these doctors need to be aware. Does Dr. Trentham publish the history of his patients who have achieved remission while only on minocycline? Whatever the case I wish you well and if the flyer was not sent to you it definitely was only an oversight. No one was intentionally excluded Regards Tamara.
Response:
Dear Merri, I don’t know your last name but the women who stuffed the envelopes said to make sure that you call as it is possible that you also were supposed to receive the invitation for the night before She told me that she saw a guest list that Dr. Trentham had suggested. Even call his office. In fact it just crossed my mind that he may be one of the evening guests. Also call Marge I know she received the mail out. Be Well BTW-If you can’t be there it will be taped. I am doing it on a VERY amateur basis, but there is going to be an actual photographer with the proper equipment donating his time. I would love to see if any of the patients on the Antibiotics would be able to draw one of the guests into an understandable exchange. I personally have considered the treatment but am on so much stuff already that I would not know what was doing what. If I ever am unfortunate to have a flare up I plan to give it a try. Regard Tamara
no comment untill now