LymeNet Flash: I'm back Update 4/19/04

This is topic I'm back Update 4/19/04 in forum Medical Questions at LymeNet Flash.

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Posted by tamicalhoun (Member # 5501) on :

Hello all,

Thank you for the private emails I've received checking on my niece. I had a computer failure and am just getting back online.

Sarah is doing much better now. We can understand what she is saying but she is still having difficulties. She is still in ICU.

She is still in a lot of pain, she is off of pain meds except for Tordol. They did the IvIg treatment but I don't know specific information about that. (how long she was treated and what the doses were.)

She doesn't have full use of her arms and legs yet (she can't walk or even stand up) and her face is still partially paralized.

The Dr.s have REFUSED any further discussion of Lyme Disease. I know the ELISA came back positive but the Dr. said it was a false positive. He said it would come back with a false positive when we got him to agree to test her. I don't even know if they ordered a Western Blot.

I've been pretty much banned from her hospital room. I faxed over a demand letter and now all of the Dr's and nurses are on the look out for me.

New for today! Her Dr. called her mother to tell her she needed a blood transfusion. Dr. said her blood volume is real low. He says he doesn't know why but it could be from all of the blood tests they've been doing? WHAT? How much blood could they be taking for it to give her a low blood volume?

We are hoping to get her out of that hospital real soon and into a rehab center. My sister then plans on changing her PCP so she can have her tested further for LD.

I'll keep you posted.

Thanks!!!

Take care,

Tami

Posted by mjbucuk (Member # 843) on :

my son with lyme gets dizzy... and now has been told he has orthostatic hypotension. When you read abt people with CFS or Fibromyalgia that have orthostatic hypotension, they talk about low blood volume.

Posted by TX Lyme Mom (Member # 3162) on :

Tami,
Thanks for the update. I've been scouring this board to be sure I didn't miss you next update, and I was getting worried that things had not turned out well and that you just didn't have it in you to post again.

Miracles do happen. I'm trusting now, especially since you did succeed in getting the "false positive" ELISA test, that your efforts will continue to pay off.

I do hope that you saw all of the responses which folks wrote to your previous posts because there were some good ones. I was a little bit worried that you had been too busy to get a chance to read all of them.
If you have trouble finding them or need help in doing a search to find them, just let us know. Someone will gladly do a search for you and post the links to them so that you can benefit from them.

Know that our prayers are still with you and your family.

Posted by Annie Fannie on :

Thanks for the update. I'll keep her in my prayers. I hope she will get proper treatment and out of the ICU.

Posted by MarieElaine (Member # 5408) on :

So glad to hear some news about Sarah.

Hang in there....I've asked the angels to send some special help to Sarah and your family.

May you receive guidance and blessings.

Marie

Posted by b333 (Member # 2479) on :

Hi,

Been keeping up on the goings on with your neice. It's been several days now and I'm sure I'm not the only one who's wondering how she is doing. Please post a message as soon as you find time. I'm praying all is improving.

God Bless You,

Pam