It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-18-2012, 06:23 PM   #1
Newbie
(male)
 
Join Date: May 2012
Location: pittsburgh, pa, USA
Posts: 9
rzurch04 HB User
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!

 
Sponsors Lightbulb
   
Old 11-19-2012, 09:29 PM   #2
Senior Veteran
(female)
 
Join Date: Aug 2010
Location: Oregon
Posts: 1,466
thefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB User
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...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

Last edited by thefarm; 11-19-2012 at 09:41 PM.

 
The Following User Says Thank You to thefarm For This Useful Post:
rzurch04 (11-20-2012)
Sponsors Lightbulb
   
Old 11-20-2012, 08:13 AM   #3
Newbie
(male)
 
Join Date: May 2012
Location: pittsburgh, pa, USA
Posts: 9
rzurch04 HB User
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!

 
Old 11-20-2012, 11:53 AM   #4
Senior Veteran
(female)
 
Join Date: Aug 2010
Location: Oregon
Posts: 1,466
thefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB User
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...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 11-21-2012, 08:35 PM   #5
Newbie
(male)
 
Join Date: May 2012
Location: pittsburgh, pa, USA
Posts: 9
rzurch04 HB User
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!

 
Old 11-22-2012, 12:44 AM   #6
Senior Veteran
(female)
 
Join Date: Aug 2010
Location: Oregon
Posts: 1,466
thefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB User
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!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 02:39 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!