posted
Geeze.....I feel special!! Can't remember the last time I really felt I had that many people concerned about me.
What a nice feeling. I've gotten so many responses, phone calls, emails, and all from people I don't know...well, sorta don't know.
My apologies to trueblue, when she called I was still heavily under the influence of anesthestics from the radiofrequency ablation procedure and was more "dopey" than normal!
I'm still really sore from the procedure, and it's still too soon to tell if it worked or not, but I'm hoping.
I saw a neuro on Tuesday. NOT IMPRESSED! It looked like a bomb had gone off in his office. I'm an organized person and having charts all over the place and junk piled on the exam table is NOT the was to impress me!
But he thinks I should go "outside". Which for all of those not living in Alaska, means go to the lower 48. He wants to refer me to Virginia Mason in Seatle, Wash. And he knows the time problem with my insurance.
So he may be good for something if he can get me there reasonably quickly?
I'm busy printing all I can find about lyme specific bands for my follow-up appointment with the internal med doc here. I want to take the information to her office tomorrow so she can review it before my appointment on Monday.
I want to use Dr. C's information, but I would like something more specific than "Dr. C". If someone could PM me an actual name for reference. I think it would be more credible to her than just Dr. C.
Also printed out Dr. B stuff to take also. Any other suggestions? I want to see if I can convince her to at least do a trial of antibiotics and retest.
Also since I had just had steriod injections on my spine prior to igenex testing, maybe that dropped my immune system down enough to cause those IND results? Instead of true positives? Anyone know of some good informational articles on false negative due to steriod treatments?
Thanks to all of you, you truly are the best! Tamera
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I definitely admire your spunk. When we feel so rotten, it's hard to think clearly enough to get to the right doctors, but it sounds like you are definitely giving one heck of a fight. I know, I know...what choice do they leave us?
I'm sorry you weren't impressed with your neurologist. Most of us haven't had good experiences with them, although not for the reasons you mentioned. Still though, it sounds like he atleast wanted to try to get you help which is definitely a good thing.
It sounds like you are doing all you can in getting your "case" ready for the next doctor. I wish I had access to information on how the steroid injections could not give you a positive since I know my local support group told me to EXPECT a negative since I had done that.
But I think, in hind sight, my saving grace was that I had been put on abx for an ear infection not too long from all this and I think it may have stirred it up to get a positive reading.
In any case, I hope someone jumps in here and gives you access to everything you need to arm yourself for this mystery illness you are facing.
Please let us know how things go with the Internal Med doctor. GOOD LUCK!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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