roxie60
Senior Member
- Messages
- 1,791
- Location
- Central Illinois, USA
It is so frustrating having to be my own doctor. I sit here now feeling slightly better than a few months ago and bewildered again by this waxing and waning of symptoms that just make me feel crazy. I am never symptom free but there are periods of time where I do not feel quite as bad but then the emotions start overwhelming me. It is like there are times I am too sick even to allow my emotions to process all I am going through, all I have lost these past years.
I am facing evaluation again for continued disability benefits, my doctor seems to be distancing herself and I cant get in to see an LLMD until July (there was one I could see in June but they are 5 hours one way and I just felt the one that is only 3 hours away is the one I should see). So I have been trying to determine what tests to take again. Do I take some that I have taken this time a year for the last two years for comparison? Do I take some more Lyme tests to try and get more definitive confirmation? If so which tests? I dont want to waste money and time on tests that will have low probablility of helping me more forward.
I see my PCP next week, she no longer accepts insurance, is harder to see than before and I know really doesnt want to treat lyme. So I want to be prepared to give her a list of tests I want done (I know she is getting paid and should be the one to make test suggestions but it just hasnt been that way for sometime and I still need a PCP due to all the laws we are burdened with).
Here is one link I'm using to try and decide what is best Lyme / Co tests to get now. I am better (relative to being mostly bedridden so about 50-60% function some days). I just dont want to blow my money on tests that will not help me move forward. If I had a positive test at least my family members and firends I hope would be less doubtful and more supportive and maybe my company will continue benefits. Without it I have an uncertain future as I know many here do ....
http://www.betterhealthguy.com/emerging-tests-for-tbis
Has anyone done the Fry or Immunosciences lab tests described at this link? I know one person here has done the IGenex Borellia ELISPOT LTT, anyone else done this test and what did you think of the results, did it differ from the basic IGenex WB result? For those who tested positive for Lyme or Coinfections, do you think how you feel at the time of the test has any bearing on the result? I am concerned about spending more money when I feel a bit better but not sure that how I feel matters regarding Lyme test results. My first WB was Negative but an LLMD thinks I have lyme since some bands were positve or IND. I just think my antibodies are not being produced so not sure how one feels if it can influence the test results.
I am pulling my hair out trying to figure out the best next testing step and what lab to use. What a friggn nightmare
I am facing evaluation again for continued disability benefits, my doctor seems to be distancing herself and I cant get in to see an LLMD until July (there was one I could see in June but they are 5 hours one way and I just felt the one that is only 3 hours away is the one I should see). So I have been trying to determine what tests to take again. Do I take some that I have taken this time a year for the last two years for comparison? Do I take some more Lyme tests to try and get more definitive confirmation? If so which tests? I dont want to waste money and time on tests that will have low probablility of helping me more forward.
I see my PCP next week, she no longer accepts insurance, is harder to see than before and I know really doesnt want to treat lyme. So I want to be prepared to give her a list of tests I want done (I know she is getting paid and should be the one to make test suggestions but it just hasnt been that way for sometime and I still need a PCP due to all the laws we are burdened with).
Here is one link I'm using to try and decide what is best Lyme / Co tests to get now. I am better (relative to being mostly bedridden so about 50-60% function some days). I just dont want to blow my money on tests that will not help me move forward. If I had a positive test at least my family members and firends I hope would be less doubtful and more supportive and maybe my company will continue benefits. Without it I have an uncertain future as I know many here do ....
http://www.betterhealthguy.com/emerging-tests-for-tbis
Has anyone done the Fry or Immunosciences lab tests described at this link? I know one person here has done the IGenex Borellia ELISPOT LTT, anyone else done this test and what did you think of the results, did it differ from the basic IGenex WB result? For those who tested positive for Lyme or Coinfections, do you think how you feel at the time of the test has any bearing on the result? I am concerned about spending more money when I feel a bit better but not sure that how I feel matters regarding Lyme test results. My first WB was Negative but an LLMD thinks I have lyme since some bands were positve or IND. I just think my antibodies are not being produced so not sure how one feels if it can influence the test results.
I am pulling my hair out trying to figure out the best next testing step and what lab to use. What a friggn nightmare