any help would be greatly appreciated!

[needinghelp7474]

am just wondering if anyone else has experinced what I am going through? Last year I became very ill my first symptom was my tongue it had red dots all over it then turned white and coated and dry and has been that way ever since! I broke out in a rash all over my chest and face, my lymphnodes all became swollen even in my genital area and I had severe dirraheah as well as fever night sweats and loss of appetite.. My tongue then became metallic tasting and began to look like it was foaming.This went on for three months. Then I became light senistive it actually hurt me and the eye floaters developed! I never had anything like this happen to me in my life! I had severe pain and headaches and couldn't even look at the light! I was in the hospital for a week in November it felt like I was dying and my neutrophils were through the roof! Nobody seemed to know what was doing this to me! I was tested for every std in the book and it came back negative each time. I was then tested for lyme disease this year and it came back positive HOWEVER the western blot was negative! i don't understand what is going on here.. I am still very ill and the doctor I am going to said it is lyme and erlichia. I test positive for erlichia on one lab but not on another. I am terrified this may be the big std and it just is testing negative on the antibody tests.. I made some poor desicions last year and I am afraid the symptoms are more like that than lyme disease. I am very confused and the doctors in my area are not very educated on lyme disease! I don't know what to do I am not crazy I just want an opionion to see if anyone else has symptoms like mine???? I still experience fatigue, headache eye floaters and dry mouth and coated tongue daily does anyone out there with lyme experience this???

[DontBelieveIt]

I'm getting some simliar symptoms. I've had swollen glands months ago.. and headaches at times, though it's not normal for me to have headaches, but mainly I'm getting really bad joint pain. My ankle (only one of them, mind you) is so painful and looks rather swollen to me..It hurts me many days from sunup to sundown. Sometimes my hip hurts so bad I cannot even lie on that side of my body.
  I'm also getting frequent bouts of diarrhea and I'm not eating anything that would cause that either. i'm also, getting scared, cuz the worse symptom is dizziness. I wanted so bad to go swimming the other day but when I tried to get on the freeway, I became so dizzy and it was so dangerous for me to drive, I had to pull over and couldn't go swimming! :(
  I've been dizzy three times this week, and I know I had that bulleye's rash at least 7 months ago.. so now I"m wondering if this disease is not starting to affect my brain also Jackie!
I had a ELISA test back in May or June but like you, it came back negative. The doctor said that Lyme Disease is very "rare" in our area, but I've been on the internet and seen at least a dozen people in our immediate area who've also caught it, and know someone in person who has had it. She said her bulleye's rash covered almost half her back but 4 of the ELISA tests all came back negative.
My problem is now, it's going to cost me at least $400 to even get seen by a doctor who's willing to even treat me for Lyme Disease and we are so low on funds, I don't think it's possible to pay for that up front!
  I think the U.S. government needs to fund medical costs for Lyme Disease for Americans. After all, they fund medical costs for the illegal aliens who come here.. no matter what the costs entail.
  I'm thinking I'll either end up flat broke and living under a bridge or be so disabled from Lyme's I'll be unable to function.

[JackieCalifornia]

Sorry to hear you are not feeling well.

Tests for Lyme are NOT very accurate, for many reasons.  That's why MDs use the tests to help diagnosis, but should not *rely* on the tests as the sole basis of a diagnosis.  The first tests usually given to check for Lyme are in two steps:  first, the ELISA test, and if it's positive, then the Western blot is given to check on the ELISA result, because ELISA has a high rate of false 'positive' results.  However, from what I read, there are test failures even when using both in that fashion.  There are also other tests that can be used (PCR), but some MDs don't trust them for reasons I don't understand.  Part of the problem is that there are about 100 different strains of Lyme here and abroad, and Lyme is everywhere, no matter what the old map distribution was:  bugs don't need permission to travel -- they just go.

Have you been tested for other infections that are also carried by ticks -- you note that your MD suggested Ehrlichiosis -- according to something I was reading just yesterday, Ehrlichiosis can suppress the immune system so that fungal infections can arise, and your description of your oral problems sounds similar to thrush, which is a yeast infection in the mouth and throat.  Did your MDs comment on that in particular?

There are other tickborne diseases also, such as Rocky Mountain Spotted Fever (also related to Ehrlichiosis), and bartonella, babesiosis, and a few others.  Each needs different tests from Lyme, and some need different treatment from Lyme.  

Eye floaters can appear in Lyme; I've had them too, and my eyes are always sensitive to light, don't know if it's because of Lyme.  I see an ophthalmologist (MD specializing in eyes) who is familiar with Lyme and takes it very seriously, so once a year I troop into his office and let him take a look.  So far so good.  An ophthalmologist has special 'eye-gazing' equipment that your LLMD would not normally have, so think about it.

Since you are worried about STDs, if you have not been tested, do ask your MD to do so.  Your LLMD can order those tests.  It is a very reasonable thing to do, just to be sure it's not that.

And one final note:  anxiety and worrying and sometimes obsessing about things can be a symptom of Lyme affecting the brain.  I've been there and done that for longer than I like to remember.  It gets much better with treatment, for what help that is to you currently.  I must say, however, that when one has some disease that the medical profession doesn't seem sometimes to fully understand, being anxious is NORMAL.  Try not to beat yourself up.  It sounds like you are doing all that can be done.  Write down a list of your concerns and take it with you to the MD and be sure you note down his/her answers.  My memory was so bad I wouldn't have been able to remember asking the questions, much less what the answers were, without writing them down.  MDs sometimes don't like that, because it takes time, so maybe take a friend or family member with you who can take notes and be your 'extra memory chip', if your own memory is spotty.

About the Ehrlichia tests -- one positive, one negative -- that happens.  Tests are not perfect, and your MD's interpretation of your symptoms while using the tests as additional clues is what is important.  

I'd suggest you keep your own copies of all tests run on you, so in case you decide to see another MD, you have a history to bring with you.  

Are you on any medications?  What has your MD recommended in that regard?  

Let us know what happens next, okay?  Hang in there.