mumof3
Junior Member
Posts: 51
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Post by mumof3 on Mar 24, 2010 14:54:26 GMT -5
I just wondered how Kathygirl was doing. I think she was going to see Dr. Sinnott in Iowa and going on vacation afterwards. Anyways, I'm thinking of you Kathy and hope you are doing well!
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Post by kathygirl on Mar 25, 2010 12:30:18 GMT -5
Hi mum, Thankyou for asking. We left for Ida Grove on Sat morning and arrived on Sunday evening. About 17 hour drive. So interesting to see the geography on the way. When we arrived at the hospital to meet Dr Sinnott, we also met sjess. She just recently joined the board here. She had an appointment for the same time. Dr Sinnott is a very gentle knowledgeable man. He explained that scleroderma is an infection thats why antibiotics work so well. He said in my situation Ivs would be needed. The cost is about 3000.00 dollars US. I am trying to find a doctor in Canada that will do it but most are so busy that they wont even take names to put on a list. There are very few in Canada that will do it but most dont believe it works. So we may end up going back to Ida Grove for treatment. My husband is like a bulldozer, he will keep pushing until every stone has been turned over. One way or another I am going to get IVs. After we left Idaa Grove on Monday we drove to Bloomington cant remember what state that was. Then on Tuesday we drove another 10 hours to Gaitlinburg,i think that is in Tennessee. Wendesday we drove thru the smokie muntains, breathtaking. Only problem I got a migrain, Iguess from the elevation changes. It was 78 degrees and we needed air conditioning, so different than Ontario Canada. Today,Thursday we are in Atlanta. I am having a rest day. Tomorrow going to the aquarium. Then Sat packing up and going to Myrtle beach for 8 days. We will break the trip home into 2 days. I think we arrive home on Monday April 5. On wed I have lung and heart tests then on Thursday I have my stomach nuked. I am surprised I am doing as well as I am. I will need a wheelchair for the aquairium but at least I am able to go for that I am thankful. The skin tightening is spreading. When I get up in the morniing and move my legs it pulls the skin on my abdomen. I will check in again in a couple of days. Hope everyone is doing well. Take care Kathy
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mumof3
Junior Member
Posts: 51
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Post by mumof3 on Mar 25, 2010 15:52:02 GMT -5
Hi Kathy, I'm glad you made it down to see Dr. S. I have spoken to him on the phone a couple of times and he is so kind. I'm sorry to hear that you aren't feeling too well. I pray that you are able to get I.V.'s soon. Hope you enjoy your time at Myrtle Beach and get some decent weather. Take care!
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Post by steve201 on Mar 25, 2010 17:29:34 GMT -5
I'm glad you could see a doc about it and agree's it's an infection...too bad you didn't get him to put you on some low dosage AP such as minocyclin in pill form to get you started.....
well..have a great time in HOT-Lanta....enjoy....
Steve
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Post by Cubby on Mar 26, 2010 16:56:23 GMT -5
I was thinking the same thing. Wonder why he didn't just put you on the pills while you are waiting for the IV? Could you give him a call and ask? Look for Christine10 on this board. she lives in Green Valley, Ontario, Canada. Wonder if she is near you as I assume you live in Canada?
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Post by kathygirl on Mar 26, 2010 21:09:11 GMT -5
I have been on minocycline for over 2 years now but its just not strong enough. We are going to try to find a doctor in Ontario to administer Ivs but if we cant in a short period of time we are going back to Ida Grove for the Ivs.
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Post by Cubby on Mar 27, 2010 12:45:59 GMT -5
AHHH, I understand. I am sure this is not an option for you. But, wondering if Photopheresis would be an option for you? I do that, very successfully. I know 2 others, who just started, so too soon to tell. One is on the Mino with it, the other is not. Just wondering.
Another thought which might not be an option for you: Have you tried the actual MINOCIN, as opposed to the Minocyclene? In my case, the brand name seems to work better. Again, Just wondering.
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Post by kathygirl on Mar 28, 2010 19:55:30 GMT -5
Thanks cubby for all of your suggestions. I have been on both generic and the brand name. I think getting the big guns out is the way to go at this point. I have recurring skin and bladder infections. I am hoping it will help with this too.
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Post by Cubby on Mar 29, 2010 17:38:36 GMT -5
Yup! Sounds like Dr. Sinnott knows his stuff. let us know how it goes!
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