Hi all, I check this site from time to time & gave up after awhile on getting replies. Now for some strange reason I checked here today & look what I see! (My original post was a year ago!)
I gave up on getting an actual diagnosis of Lyme,Parkinson's,MS or anything else. I now say I have "mystery disease". That seems to shut people up!
I live in WA state,getting any doctor to recognize the possibility of Lyme is like trying to drive a toothpick into a brick wall.
Last year I decided to just give up with doctor's,even went so far as to cancel my health insurance. ( A clear indication of how my brain works eh?)
I've now suffered from all my mystery ailments for over 9 yrs. My saga began with a spider bite on my foot. We also apparently don't have any harmful spiders in my state. The bite is still visable!
Now that I've reached the point of just giving up I'm not sure I belong on a Lyme forum. Unless I win the lotto I can't see ever having the money needed for further testing much less treatment. In hindsight I should have been much more aggressive. After all the doctor's,all the tests (and a negative Lyme test by a local lab),I simply reached a point where I figured the doctor's were doing me more harm than good.
During all these years I've had some rather strange symptoms come & go. Someone mentioned heart transplants.Summer before last I went to ER because of severe angina,I had it happen again 2 more times during the same week,always @ about 3am.This is just ONE example of symptoms that come & go.
I've never found any other condition that has symptoms come & go,MS does to some extent but not with everything I've experienced. I've had some symptoms of Parkinson's,tremor,"dead arm swing",slurring words,etc.
I've had some symptoms of MS. And I have 2 lesions on my brain MRI.
I've had times of extreme vertigo. Foot drop & tripping. Sharp head pains. Hair loss & weight gain. Memory loss,very bad in the beginning! Depression,anxiety attacks,rage attacks & severe myoclonic jerks.
Have had the pelvic pain (strange thing indeed),loss of sexual desire,many,many eye issues. Feeling of water or bugs crawling on my legs (I'd actually remove my jeans to look for bugs).
Lost my "self" meaning things that used to matter to me no longer did. I lost my personality,became very reclusive. And the fatique is so bad I barely function most days.
Can recall very clearly telling one doc I felt like I'd been poisoned,I knew something was very wrong but no idea what. Everything seemed to be out of wack. My knees would swell up & hurt so bad I could barely walk. I still get sharp pains in various parts of my body. No rhyme or reason to any of this.Sometimes I sleep for 10 hrs,sometimes I can't sleep more than 3-4 hrs.
Had 3 bad sciatic experiences where I ended up using a walker. This has been one of the worse as far as pain,and the first time was right after the spider bite. No long after that I began having the myoclonic jerks. My entire body jerk from head to toes.I used to have to hang onto the walls when walking.I gave up driving over 3 yrs ago.
Don't want to write a book here,but since I started this thread & finally have some replies I thought I'd reply also. I've given up on any doctor finding an answer. I rely on my own immune system to get me by from day to day. I'm grateful for the improvements over the years. Have gone as long as 10 weeks without jerking for instance. My brain function has improved tremendously (even though it's still not 100%). I know my name,address,and phone number now!
I'm able to carry on a conversation now. I remember everyday how to push the button & turn on my computer,I know what I'm supposed to do when I get in the shower.
I adopted a dog last year to save my life & he has done that. He forces me to get out & walk. He forces me to care. I had just done several months of the salt/c when I made the decision to save this dog.....before that it would have been impossible.
I'm hoping all of you will have better days ahead! And by the way,in case you think I'm now a nut case,there is ONE other person in the state of WA that has Lyme from a spider bite,they are cousins to ticks afterall. And I do happen to live in woods & have deer everywhere.
Hope for accurate testing....and always hope for a cure!