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Posted 10/5/2012 7:10 PM (GMT 0)
Hello everyone. Im new here. Freshly dxd with lyme. Being treatedfor fibro for about 2 yrs now. Primary happened to see bldwrk results from rheumy ... Said lyme positive and 21 days doxy abx. Ok... That visit with primary was follow up from er visit for tachycardia. So cadrio dr said go see id dr. Went to very prestigious hosp in nyc as that is where i have my rheumy, endo, and neurosurg. Definately wasnt going to waste time with upstate drs. This is where thus gets interesting.... Here is a recap:
Id dr:im assuming you are here due to your lyme test.
Me:i explained to him my whole history and that primary put me on abx
Id dr: i would not have put you on abx. I dont think its positive. Too many false positives as it is a highly sensitive test. We will test again and if titre is neg i will call you and tell you to stop your abx. If pos it will go for the ultra sensitive testing.
Me: ????? Seriously????
Me: umm.. Ive heard that these tests are only 60 %accurate and that there are two extreme schools of though regarding lyme
Id dr: lyme is the most controversial subject in id right now. There is alot of $$ to be made with lyme and that is why. Alot of what you read on the internet has NO scientic data to support it! In fact, DR. WORMSER is THE expert in our area in westchester and he is on the commitee that helped create the guidelines.
Me: (did he really just go there?.. So not wanting to sound like an internet info maniac i dumbed it down a little) well ive heard that there is some research.. The monkey testing and such... It makes it very difficult as a patient to know what to do. And ive been sick for a loong time and quite frankly i dont care whatever it is i just want it treated so i can get on with my life
Id dr: i see ur very frustrated. But i dont think u have lyme. And by the way have you considered an AIDS test.. Im sure thats not whats going on but thats what you gt when you go to the ID dr.
Me: (oh my god!! Is he freakin serious? Since when did lyme and/or fibro = aids?? I was totally dumbfounded)
Id dr: either way ill b referring you back to your rheumy because he is the expert and im just a stupi id dr..(i swear he really said that)

Soooo... To top it off he called to tell me that the lyme titre is neg and i should STOP ABX!!!
What would you do?? I dont think i will be stopping abx. And if i had a sinus infection and went on abx a week later im sure my counts would b much lower for infection.. Wouldnt thus b the same scenario? I figured that it would b neg as the little spiros mutate themselves? I would love your input. Thanks!

Jen
Posted 10/6/2012 3:21 AM (GMT 0)
I would go directly to an llmd, don't waste any time, I was diagnosed w/fibro 8 yrs ago, come to find out it is lyme, I have been fighting so hard the past year, I feel like I may die from this (I had severe depression to begin with) and there's no way I'm living the rest of my life like this.

I heard doc's say stuff like that too about doc's just trying to make money off of this, and could not understand why it seemed like the whole world was against me trying to get myself better.

And I think it comes down to , most people in this world sadly are followers, not leaders, even professionals, so literally these handful of idiots set these idsa guidelines, and then the big hospitals and universities Yale, mayo clinic, etc.. just followed suite.

I wouldn't waste any more time on any neurologost, rheum, any of them..I'm sure you had lyme all along..did they do anything for your fibro? I know no one did for me but took thousands of dollars from me when I could have paid a few copays for some antibiotics and I probably would have recovered, if done very early.
Posted 10/6/2012 5:00 AM (GMT 0)
I'm sorry you had to go through this, but I'm glad you did your research and knew better! Please let us know if you need help locating a LLMD in your area - in the meantime, please look through our "New to Lyme" thread - there's a lot of really useful information, including info on detoxing which should help some of your symptoms right away!
Posted 10/6/2012 12:15 PM (GMT 0)
Thanks for your replies. The rheumy had me on adderall for fatigue. It helped but now I've had to stop it due to the racing heart and palpitations.  My primary said something that it could be lyme carditis.  So the fatique is AWFUL!! He also has me on Elavil but that seems that I get immune to it soo quickly.  It keeps needing to be increased.  It's up to 100mg now and I don't think it can go much higher.  I am supposed to follow up with him on the 17th.  I have soo many symptoms to tell him too.  My hands are soo swollen and sore joints.  It's terrible.  Hair loss, weight gain, etc. 

I definately will be actively seeking an llmd.  It scares me a little though as I do not want to be taken advantage of either.  I called one of the llmd's on the list and WHOA...$1,965 to walk in the door.  Very renowned dr but I cannot afford to do that!

 

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