Lyme Disease Community
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1094370 tn?1317134825


Hi Jackie and Others,

It's been at least a year, but I messed up.  Started feeling pretty good and at the same time, starting getting acid reflux because of the antibotics.  Also, my neuro at UCSF told me I do NOT have lyme disease.  So, in short, I decided it was time to stop my treatment.  Big Mistake.

I know, I know......you told me (Jackie :)

Anyway, I went back to LLMD's office and am awaiting test results.  My history of lyme did not include pain, but I'm telling you, I have been in so much pain lately.  It hits me one day, every bone in my body is aching and then bam, the next day it's gone.  I had a routine physical a few weeks ago and my RA factor was elevated but I don't think i have RA.  I don't have any other symptoms or positive tests for it.  My general doc wants me to see a Rhueme and I will, but I know that this is Lyme.  

For those who don't know me, I have tested positive with Igenex many times, I had a known tick bite when I was younger.  However, I had to have my gallbladder removed 5 years ago and all my symptoms started just a few weeks after surgery which I guess is pretty common because our bodies are under so much stress in surgery/recovery that out immune systems cannot keep the lyme in check anymore.  As I type this, my toes are throbbing on and off.  Sounds weird but true.  On again, off again tinnitus still bothers me too.  UGH....

Anyway, just wanted to check in, say hi to everyone who is dealing with this.  It's sooooo frustrating!!!!!

Oh...Happy Easter :)

5 Responses
Avatar universal
Welcome back!  ... but sorry you're still fighting the bugz.

Would you consider seeing 'my' Lyme doc?  If I got Lyme again, I'd be camping on his doorstep.  I forget now if your insurance is restricted to docs in your plan, but even if it is ... well, you know where I'm going with this.  

Whatever you decide to do, we're always here for you.  Big hug!!  J
Avatar universal
... and I just re-read your message above ... "I went back to LLMD's office and am awaiting test results."  Is this with a Lyme doc?  Even maybe *my* Lyme doc?  [Crossing fingers now!]  

More (but gentle) hugs to you -- you hang in, now.  J
Avatar universal
   ... and PS -- About the neurologist you saw at A Big Medical Center With A Big Reputation:  it's not unusual for docs who practice in that kind of facility to not believe much in Lyme disease.  That approach is the exact opposite of the more humble LLMDs, perhaps because those who are practicing in A Big Medical Center tend to believe that they know better than other docs.  

That is of course a huge generalization, but the air does get thin on top of the tallest mountains, and those folks often don't think as clearly as they ought to.  These brainy and highly educated docs mean well, but they don't always know better.  

A similar situation occurred several decades ago when AIDS was new to the world, and the docs were scrambling to figure out how to diagnose, how to treat and how to prevent AIDS.  As people began to panic, one of the head docs at the US Centers for Disease Control (CDC) got on live TV, complete with white lab coat and a stethoscope around his neck, and then broadcast on national TV that if you are not gay or Haitian, you could not get Lyme.  

Uh, it was obvious to even uneducated me that bacteria (such as AIDS) don't care whether you are gay or Haitian, but these symptoms were common in many patients who had already contracted AIDS, so the docs made a dumb move, trying to calm people down.

AIDS and Lyme don't have anything in common, except docs who are scrambling to figure it all out.  So try not to worry ... Lyme is quite beatable, with a wise doc and a bit of patience as the meds take effect.  

Take care, and keep up posted!  Hugs to you -- !
Avatar universal
PS  -- oops, typing too fast for my brain:   I wrote above about "bacteria (such as AIDS)" ... when even silly *I* know that AIDS is caused by a virus.   Sorry for the misstatement.
1094370 tn?1317134825
Thanks Jackie!  

I am hoping that while it's horrible, that the Zika virus brings a  little more attention to Lyme.  That it's true and a simple bug bit CAN bring about major issues to our bodies and that it is POSSIBLE that it can be sexually transmitted!!!
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