I had 21 vials of blood drawn today. I saw a doctor at Mass General Hospital in the Infectious Disease Department. She felt that I do likely have lyme, but may also have something else, and thus the 21 vials of blood for everything from arsenic to west nile virus.
As far as an IDSA doctor she was very willing to just examine *me* and my tests and try to figure it out -- which is so much better than the doc I saw at Rhode Island Hospital who basically looked at my cdc positive tests and said you don't have lyme and I don't know why you're are sick, but you sure shouldn't take antibiotics.
It was depressing to give my health history to this new doc, though I appreciated her willingness to put the time into the process. Her first question was, "When was the last time you felt well." I thought a long time and couldn't really answer, so we started with childhood and worked our way through 50 years.
I saw her be cause I've been looking for a doc that takes insurance and would also treat the lyme -- this is a serious problem. I have a great doc, but it costs me $200-500 per visit depending on the amount of time and the number of supplements. My husband and I are both disabled and thus low income, so... However, the private doc is good -- she recently got a handle on me having insulin resistance and is trying to help me do what I can to correct that. My gp never mentioned it, despite my offering up of related problems, and my cardiologist said I had it but left me on my own to figure out what to do about it. Why is it so hard to find a decent doctor?
So the MGH doc said her tack would be to finish off the round of doxycycline I'm on and then wait and see, perhaps I would continue to improve. However if the neuro symptoms got worse she'd consider IV rocephin. She also thought some of my cardiac meds might be causing the fatigue, wanted to see the mri's of my brain (and the white spots thereupon), and the 21 vials of blood.
So I'll think about it. My private doc wants me to switch to another antibiotic and a cyst buster. I'm ambivalent about continuing more pills, but at the same time worried that if I don't do that, I'll have a bad relapse. I just wish there was a better field of *understanding* about lyme disease. It feels like all treatments are simply a matter point of view.
The MGH doc also had some interesting input about the MRSA (resistant staph) I got in the hospital last fall while I had my cardica problems. She said that it's quite likely that it's laying dormant in my skin and that I could get it again, and suggested I do some work while I'm on antibiotics to try to get rid of it if possible. Her protocols required full gown and mask and gloves just to touch me. Interesting since I recall being quite concerned in the ER when the guy getting the ring off my infected finger didn't even use gloves.
Tom (hubby) went with me (he also had an appt at his cardiologist this morning at MGH) and we had to get up too early to take the train. I feel tired and mopey.
However, afterward we went to a chinese restaurant in boston that was good, and I sort of slept on the train coming back and then sort of rested in bed for an hour.
I'm going to try to go to the gym tonight -- Iv'e been really good about it lately -- trying so hard to loose weight.
anyway thanks for listening to me whine.
Karen
Posted by ByronSBell 2007 (Member # 11496) on :
I saw a doctor kindof like yours except I dont think he is as good as yours, first of all he was so fat he could not walk, he has to roll around in an office chair. He drew about 15 longtube vials of blood on me and basically tested me for everything, I walked in the first time with my positive Bowen lyme test and he just crumnled it up and threw it in the trash and said it was bogus. After all he tests were in he found I had hypercoaglation, low immune system, low iron. He gave me some supplements and said see ya in 3 months! We paid about $5,000 for him. He was said to be one of the top hematologist in the country and that he can find a cure for anyone...
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