i am VERY confused. i just learned recently that there are a significant number of people (like myself) who are very ill from Lyme disease and a significant mass of medical professionals who are in denial regarding this topic. I just don't get it.
What is going on?

perhaps you've gotten some of this out of your system if you've chatted for a while but i just can't believe this is my life. what very little energy i had today i reserved it for mad. the only thing that is making me feel better is knowing that you all are going through something similar. not that i'm at all glad that you're ill.. i truly feel your suffering and pain. it's just for the reason that i thought i was going crazy because i've been so ill and doctors are telling me i'm not (even with a life threatening infection in May called Guillan-Barre and two bouts of meningitis). well, two weeks ago the last non-lyme doctor i saw said, "i don't know what is wrong with you - but i do think there is some psychiatric illness" - a diagnosis he made after one visit and without any of my medical records. this dr. wouldn't even sign my insurance form for my new wheelchair (at least i was walking three months ago ) because he thought i was faking. each time i think i hit a low, i hit a new low. and i'm a positive person (not lately)

i'm the only person i've ever known that's had lyme disease. although i got it on the eastcoast and moved to a new region one would think that at least one medical professional would have figured it out during 20 years of illness. even worse "they" told me i don't have what i have because they did a blood test and that if i had been treated for three weeks of antibotics 20 years ago i was cured of lyme disease then. i feel so stupid and uneducated. Here's the big irony, because i was one of the first cases to be misdiagnosed as HIV and then diagnosed with lyme in mass. i did a documentary on lyme disease to educate the public about the complexities of the disease and what to watch for.

Can anyone explain this disconnect on this subject ? People/families lives are being robbed.

I am new to Lyme but I am learning what you are saying. i have had for years but have just recently been diognosed. My LLD is on the other side of the state. Heaven forbid that I have to see my local Dr for anything. The Dr's here hear Lyme disease and shrug their sholders like it is something crazy.

Even thought i have had a Stroke at age 32 and plagued with siezures that they could never explain. problems for seven years that have gone undiognosed and Between two PCP, two Neurologists, one ortopeadic, one reomatologist, one ear nose and troat doctor, one opthomologist, an eye specialist from another county, and countless ER and hospital visits no one could give me a diognosis. Yet still my Dr shrugs at the suggestion of Lyme Disease.

I can't explain it but I have had the panic attack and anxiety thing trown at me more times than I care to minchen. So much that it made me have anxiety!

Finnally after years I have found out what is wrong with me. I live on the east coast though. NC, only one LLD in the whole state.

I am afraid that the Dr's around here are very irliterate about Lyme Disease and it is very sad. The last time I had a bad siezure I had to call 911. It was over when the ambulance arrived. I refused to go to the hospital because I knew what would happen. They would label me anxiety. i had my husband come and get me to take me to the Dr but unfortunantly I had another on the way worse than the first so he took me to the ER anyway. The first thing said was anxiety, then complicated miagraine,

I never even had a headache. Just couldn't talk or move my arms or legs for a few minute. I had 5 siezures that day. 3 right in front of them. I try to do everything I can not to go to the ER, or my local Dr's. I honestly want to cry when I have to go there.

Sorry you've had to join our club, but nice to have you here.

What can I say, except "Yup, I know what you mean, and I can't figure it out either."..

What you write simmers in the background for us all. The anger and resentments never really go away for me. If the PA lyme bill dies I will be pssed off for days, and I'm also usually even tempered. It's all about greed. Guess who's lobbying hard to defeat this bill? Insurance industry.

Welcome to lymenet, paisley

I agree with treepatrol and fish. Somewhere, somehow it is all about money.

i can't help but think that one day our collective consiousness will serve a purpose some day. Because i don't think anyone with this disease can live with it and not be enlightend on some level. isn't it interesting how all the things you thought were important just kind of melted away when your health began to deteriorate?

If every person who had lyme was treated appropriately the insurance companies would probaly go bankrupt or at least lose TONS of profits in some states

Plus some drs. are just ignorant to what lyme is.... and you have some stupid drs. that somehow get to be called experts that say chronic lyme dosnt exist...

I'd like to thru him in a pit of infected ticks and not give him any treatment for 13 years... he'd change his story real fast.

the other reason drs. dont want to deal with treating lyme either effectively or at all is because some people who treat chronic lyme have had there licenses threatened...

they want to take their licesenes away... so of course most drs arent going to risk it and they have that "experts" there is no chronic lyme "research " to fall back on.

I hate the hospital to... cant tell you how many times I heard that chronic lyme doesnt exist...and that I dont have lyme cuz I had over 4 weeks of antibotics now its fibromyalgia...(fibramyalgia ur suposed to have so many trigger/tender points) they dont even examine me so they cant diagnose me...grr

I completely understand your frustration.