enter me in the race

[wheeler641]

after sitting around thinking, I have decided I am going to find out what this thing is if it kills me. I am going to call around and make appointments and go to all of them until I find out what is doing this to me. My new symptoms in addition to my eye twitching all the time and numbness in the left side of my face, is that toward late evening it feels like my eyes are going to pop out of my head. I had a sinus infection and am still taking amoxicillian for it but does not seem to be getting any better, so one of my first trips will be to an eye doctor. Now my question I live in indiana, not far from the illinois state line. It is only a 30 minute drive to downtown chicago, does anyone know of any good nuerologists in the chicago area? I go to see my rhuemy again this week and have had all the tests done, I quess they are ok, no one has called me to say anything different. I am going to ask for another lyme test, since I did test positive about 3 years ago. Another new symptom I am having is that my skin feels like it is stretching, like something is pulling on it, the feeling is that of like my anlkles being swollen and the skin is stretching but nothing is swollen, also have been getting morning headaches lately, I never get headaches, they subside later on in the day. Oh well!, I am not going to get crazy about this, just determined, I cannot live my life this way with new thing popping up everyday, maybe someone can put the pieces of the puzzle together.

 

[crystalkk]

wheeler,

Did you get any treatment after the positive lyme test 3 years ago? Before I read that, I was going to say about looking deeper into lyme.
Those test are not always accurate and the regular medical field does not believe in cronic lyme. Good luck!

I was reading about your high sed rate-that could be from lyme also. low potasssium, vitiamin d, magneisum
also symptoms.

 

[wheeler641]

hi, I took doxycycline for about 2 months, however I do not remember my doc repeating the test to see if it was cleared up. Still remember when I was bitten by the tic, had a hell of a time getting the little bugger out, still have a small bump where I was bitten. I have all the classic symptoms of lYme.

 

[rose]

Wheeler,

I agree that you should keep at it, there's bound to be an answer out there for you.

Over on the "Stories of Hope" forum page, Al posted a thread titled: Hopefully Lymme - ALS ? I'm guessing you've already read it, but if not, take the time to, it also might give you some contact ideas for finding a doctor more local to you that is interesting in exploring the Lyme connection in greater depth.

 

[Zaphoon]

Wheeler,

Glad to have you in the race! No sense in having something keep you down if it is treatable or curable. Answers are important, whether they be good, bad or even indifferent.

 

[lovelily]

Hi wheeler...do you remember how many bands you were positive on, for the lyme test? Anyway, it can take a very long time of treatment before you recover. Lyme disease can make you really ill.

Best wishes as you search for your answers!

 

[brendapals]

wheeler,
Best wishes in your race! Sounds like you've got a good plan going, keep us posted.
-b

 

[t34gib]

Wheeler641, Hello and welcome. I am originally from Hammond so we used to be neighbors! I live in Florida now but since this whole thing has started, all i want to do is go home. Anyway, I have heard that Northwestern would be a good place to look into, or The University of Chicago. Check them out. I hope you get an answer. Let us know how you do.
NancyS

 

[lydia]

Wheeler, glad to hear your are in the race but sorry for the reasons behind being in it...if that makes any sense. Can you describe what test you had that was the "positive" for Lyme? I am pretty ignorant about Lyme but recall that I had a positive test for Lyme that was then negated (?) by a subsequent negative Western Blot (?). I don't know what any of these mean and will maybe research it later. Take that roadtrip!

Lydia

 

[wheeler641]

thanks. for the encouragement everyone, I was gone the better part of the day, it has been about -40 here in Indiana with the wind chill and I was getting cabin fever, went to visit my daughter in Illinois, was a nice relaxing day. I am exhausted now it is about an hour drive there and back but just had to get out for awhile. Rose, thanks I did read that post. Zaphoon, I just have to have an answer, whether it is good , bad, or ugly. Lydia, I am not sure what kind of test for Lyme I had,, not even sure why my doc ran the test, I think I told him I was bitten by a tick. The only thing I remember that he said something like the titer was high? I was feeling ok back then and I don't think I even finished the doxycycline that I was supposed to take for 2 months. Now I feel like I have the flu all the time, no weakness, just plain tired. The doc that gave me test is my regular GP, I have been seeing him for about 16 years and I like him alot and I know he feels bad that he cannot figure out whats wrong with me. T-34, I wish I was in florida now, the weather here this year has been brutal, margaret