hi guys - i am at my wit's end here. i have been having lyme disease symptoms for almost two months now, and each day i get worse. it started with a bite, very red itchy infection around it, then stomache upset, muscle and joint aches and pains, and finally neurological symptoms. i have a weakened immune system, so it seems like this is taking over my body very quickly. for the past week, i've even had convulsions several times. tonight i was rushed to the hospital in an ambulance because i had some weird episode - i was sitting at the table and i felt like i just stuck my finger in an electric socket. my body flew across the table, and i felt like my heart lept out of my throat. then i lost feeling and movement in my limbs for almost a full 15 minutes. this is the icing on the cake to a week of progressively worse symptoms. the ER doctor drew my blood but then refused to test me for lyme or anything else because "it didn't seem like an emergency", and i found out that the W. Blot test i had yesterday was contaminated because they mislabeled my blood and aren't even sure where it is. i'm becoming very frustrated and scared for my own health. i've already missed a week's worth of work, had my blood drawn 3 times in one week, and don't show any signs of getting better.
please guys - any advice in the interim while i try to find someone, anyone to give me a lyme test and to send to Igenex to test for co-infection too? my nervous system is seriously hurt right now, i'm having major heart palpatations, and i don't want to push this for much longer. i am getting very scared that i've been looking for answers and getting closed doors everywhere i go.

hi ktinbk. In my opinion, the most important thing someone who has or may have Lyme can do is see a knowledgeable doctor. The sooner the better. Not doing so is like seeing a podiatrist for a cardiac problem.

Have you tried contacting any of the NY Lyme doctors?

You need to call a lyme doctor in your area....

Go to a LLMD.

i finally got an appointment with an infectious disease/lyme dr. after weeks of calling around and being told i need to have a referral from my pcp first (who didn't see the need for it even though he knew i'd been bitten and had all the symptoms). i'm going to be seeing a specialist at mt. sinai next week. i'm still in a lot of pain, and i think my boss is frustrated with me, but i'm hoping seeing this dr. is the first step in getting some kind of relief.

Good luck!! :)

Unless you go to a LLMD, that is Lyme Literate MD, one that follows ILADS guidelines, you are not going to get the right treatment. Even if you go to an infectious disease doctor, and they say they treat lyme, they treat with the IDSA guidelines and they only give you 14-28 days of antibiotic.

I spent 3 years going to about 50 kinds of specialists, 3 infectious disease, had a positive ELISA, and got absolutely no where. None of them would treat me.

All they did was waste my time while I got sicker and sicker. Even with a positive test and a bullseye rash, some doctors won't treat.

make an appointment with an LLMD now, there will probably be a long wait. meanwhile go to your infectious disease and maybe he will give you a month of doxy to tide you over while you wait for the LLMD, if you are lucky.

I know this sounds rediculous, but I swear its true. I now have permanent nerve damage, heart and brain damage from going untreated for so long.

I agree with roro... LLMD's do not take insurance so there is no need for a referral.. Unfortunaly its expensive but its a small price to pay for your health back.. I saw 3 I.D. doctors and they didnt help at all.. They dont follow the proper guidelines.. You will never get meds for more then a couple of weeks... Thats not long enough if you are really sick.. I also went the mt. sinai and columbia route in the beginning... It got me no where... I have been out of work since april and there are many people on this board that have been out of work alot longer... it stinks.. but you need to see a LLMD.. you will only get worse.. take our word for it... we have all been down this path before.. good luck

Kelly

wow, this is good to know but it's also very depressing news. so i will not find an LLMD in NYC that takes insurance? i scheduled a back up appt with a Dr. Kendlar who was recommended to me. He said he takes Aetna. Now i'm concerned. it is literally impossible for me to see a dr. who does not take insurance. i have absolutely no way of paying unless my insurance covers it. Dr. Raxlan's fees alone would eat up what's left of my paycheck after rent, and that's not taking into account the hundreds of dollars of bills i'd default on.

so besides Dr. Raxlan, what are some other good LLMD's in the city? Is the Westchester Center good? I also heard about the IDCC in Cincinnati, OH... has anyone been there? I guess any suggestions for a bona fide LLMD in the greater NYC area are helpful. i could travel to NJ or Long Island if i had to. I know Dr. Raxlan is supposed to be the best, but the thought of those fees literally scares me to death.

Hi... I dont know of even one LLMD that takes insurance.. In the beginning I tried to find doctors that took insurance and all I found were I.D. dr's... They wouldnt treat me longer then a month of antibiotics.. That is definitely not long enough.. It stinks that LLMD's dont take insurance... I sent in my bills to my insurance company and they reimburse me at least 80% of the fee.. Plus insurance pays for all of my meds, including my PICC which I have had for over 3 months... I only see my Dr. every 6 weeks and the price goes down after the first visit... Its really not that bad...You should call your insurance co. and see what they would reimburse you... something is better then nothing.. They also will pay for your meds.. Thats the most important thing.. Good luck and keep us posted..

Kelly

Ok, that is a little more comforting. thank you.

keep us posted... good luck

my insurance is also covering most everything. I wish I did this years ago. 80% of my bills are covered and my meds have been $4 a month.

considering my claims used to be in the thousands per month, and are now in the hundreds, the insurance company is smart. ;)

i think i am going to have to go this route. i went ahead and kept my mt. sinai appt this morning. i was hoping i could at least get started on something while i researched an LLMD who could take me. but as i was afraid of, the dr. told me that if i didn't have a bulls eye rash i can't be sick from anything from the tick (and since i killed the tick, he's saying it couldn't be an infected one since it lives in New York City and not upstate).
he wants me to consider that maybe i'm just going through a depression right now. i feel like by the time the drs get their way i WILL be depressed after months of feeling sick and getting no treatment. he wouldn't test for co-infections because he told me i'd have a very high fever if i had one. and he ran yet another lyme test, but he didn't take the blood for igenex since the kit says to draw on monday through wednesday and send in.
at this rate, i have no choice but to go the LLMD route and see if i can get some help. i'm not saying i want to have it... but i am saying that something is very wrong and i feel like no one's hearing me.

Hi

I am being told the same.... i have to wait for results of my mri and discuss the possibility of lyme with my neurologist....like yourself i may jus have to contact LLMD myself and make an appt as im sure i probably wont be taken seriuously which i think is more frustrating, we know ourselves and know when somthing isnt quite right and know when we are not well.... i am a true believer in that things happen for a reason.... and out of a negative situation there is a positive....i guess what im trying to say is something brought me to this board and lyme disease and finding a LLMD in uk, (before this i had no knowledge of what lyme disease), so for me maybe that is my positive out of my negative situation....

Good with LLMD appt... :)

Its so fustrating when doctors make you feel like your going nuts... I never had a bullseye rash and I even pulled out 2 ticks that were pretty big 7 years ago...I tested positive and even had 3 or 4 co-infections... So needless to say doctors have no clue and need to be educated on lyme disease... Listen, before you get worse make an appointment with a LLMD... Spend the money to see a doctor that wont brush you off and get proper medication.. I promise you its the best thing you will ever do.. Its a LONG LONG LONG road to recovery, so you should start as soon as possible...