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rzurch04 11-18-2012 06:23 PM

Chronich sufferer... help!!!
I was misdiagnosed for a long period of time but as of lately I stopped my long time antibiotic treatment and a week later I had a sever attack with uncontrolled spasms and twitching also extreme widespread pain. I was hospitalized for a week for this leaving with questions unanswered! They did another western blot test ( first one was positive from ignex a year and a half ago.) And it came back negative!!! 3 weeks after being put of the hospital some symptoms are still extreme while I noticed others are gone. So my questions are am I in remission? Cured? Or still suffering?!?! Is there any other test I can take to see any different results? And my llmd was no help he said we can put you back on antibiotics or keep you off of them. So would anybody in the Pittsburgh PA area know a good llmd? Thanks to all!

thefarm 11-19-2012 09:29 PM

Re: Chronich sufferer... help!!!
I'm sorry, I'm alittle lost?
Do you think you were misdiagnosed with Lyme?
I haven't been diagnosed yet, been tested many times. Trying to come up with the $ to have a naturepath run tests. Even with the Lyme tests ran that were negative, I think I have Lyme.
Lyme will never make complete sense...
Like you, I have the full body pain that only keeps getting worst. Never feel good & always hurt.
I've had problems come & go over the yrs. Pain, Fatigue, feeling like I'm always sick, vomiting & a dissociative Dissorder are my main problems. Everything else I just deal with.
Anyhow, it does seem like you have Lyme & weren't misdiagnosed. You may be testing negative now but that doesn't mean you don't have it. It's just an example of how unrealiable these tests are.
It seems like you should not have stopped treatment... Or atleast be on a natural treatment. It's my understanding Lyme gets used to antibiotics...
I don't know half of what others do here about Lyme. I have been in denial about it until recently. I'm just so sick anymore that I'm afraid that whatever is going on will kill me. As all tests I have had for 14 yrs have been normal, everything points twords Lyme.
No doctor can tell me why the pain is so bad, they have no idea how exhausted I am, they can't tell me why I deal with chronic vomiting, or why I have a dissorder that makes me feel drugged all the time. Yet it's all symptoms of Lyme...
Anyhow, please don't think you were misdiagnosed. You have went through so much already to kill the Lyme, I would hate for to to have to start all over...

rzurch04 11-20-2012 08:13 AM

Re: Chronich sufferer... help!!!
From reading what you posted about your symptoms I have to concur that I have almost identical ones, and my concern wasn't that I was misdiagnosed because I know I have/had it, it was based more on weather I still suffer from iy. To me the attack I had could have been a "herx" effect but if it was that why do I still feel the way I/you do! Also questions about if the cell can go into remission or if it will ever go away. I'm at my very last strand of hair that I'm going to pull out. As if I thought struggling through PICC lines were bad enough but not knowing if I'm ever going to get better is destroying more and more lately. I really hope you get the treatment you need so you may able to feel some relief. There isn't any in my area but I heard hyperbaric chambers really help with stiff/soreness and as well as some fibromyalgia pain!

thefarm 11-20-2012 11:53 AM

Re: Chronich sufferer... help!!!
I'm kinda wondering if you had a herx & still have Lyme. I'd keep killing those suckers until there was nothing left...
Hopefully this means they are all dead or almost there... I think even after they are all gone, you'll still have some effects.
Maybe just continue treatment & see what happens?
I wish I had answeres for you... Hopefully someone else will jump in with more help...

rzurch04 11-21-2012 08:35 PM

Re: Chronich sufferer... help!!!
For right now my treatment is on hold because of the C DIFF I have developed from the extremely long and aggressive abx. So I have to deal with everything for now just hope the Lyme doesn't manifest itself while I'm off the abx! Thank you for the help so far. It's really hard to find people to relate my experiences to and have them know what everyone suffering from Lyme may feel like!

thefarm 11-22-2012 12:44 AM

Re: Chronich sufferer... help!!!
I wish I was more help :) I just don't know enough & only know my own experiences... Even if you just wanna talk about symptoms, I'm here!
Wishing you the best of luck!

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