Does this sound familar to anyone? I'm getting pretty desperate for answers.

Hope you do find out !  It's great to know what you have or don't have.

As you've probably learned here, the tests unfortunately can be  unreliable....and I hope your doc will treat your symptoms and not rely soley on blood tests.

I still have not gotten a positive blood test to date. 

 

Cat, since you started treating yourself, how do you feel? Were you able to heal? I went all over the place looking for the HP foodgrade but couldn't find it. I will hit the standard healthstore tomorrow. For now, the only thing that totally stops the never pain is Xanax and that's not a long-term solution because it'll take higher and higher doses to get the same effect and I don't want that problem atop the current ones. I'm using it until I find something that works. I read that juicing celery stopped nerve pain dead in its tracks, two or three stalks. Naturally I don't have a juicer so I will be buying one tomorrow when I'm out finding the other stuff I need. I also got a case of alkaline water. As far as that Xanax, I'm using about 1 to 1.5 mg a day. I wait until the pain is so bad I can't bear it anymore, then I take one. I tried Vicodin but it doesn't touch the pain, it's as good as Motrin, not results whatsoever so for now it's Xanax until the doc does something for me, I hope, and I do for myself. I'll be seeing the accpuncturist tomorrow. I'll let you know how the bath goes too. At this point, nothing could hurt worse than this has. It's a blessing I found this Web site, it gives me some hope that I can put some control back in my own hands. I really, really, really hate this right now. Nothing beats getting up and feeling good. I took that for granted, man did I ever.

Hey, before I see the LLMD, what other tests could I get my doc to do, all of which would be covered by insurance. Once I hit the LLMD, I'm paying for it all and we just got a house, we're so low on money now.

I posted a new thread entitled Waste of Time. The Neuro said I'm fine, come see him in two months if I'm not. Then he says he saw two bright lesions on my brain that may or may not be MS, but he'd rather see more lesions to diagnosis me. I'm guessing I go another two months and if the symptoms don't go away, back to the EMG we go. I was more worried about MND than anything else. But, I did order the Lyme test and I've got an appointment with a great immunologist/allergist Tuesday, she'll do the test. The Neuro refused saying my symptoms don't merit it. I know this other lady will do it. I was a paramedic for some time, I can' draw my own darn blood if I need to. Do you realize I still can't find the friggin food grade hydrogen perioxide?

So Neuro wanted me to take Prednisone (as my PCP suggested), Neurotin, Vicodin and Xanax. Ummmm, nothing like blanking out the pain and not fixing it, huh? I don't want to take the steriod until I know about the Lyme test. If my new post, I posted my bloodwork, there's a small H/L difference in my WBC that might indicate a bacterial infection, or the lab values are just different .I take steriods and I'm sure those values will go right to hell in a handbasket.

If this new lady won't do the test and do some more digging for me, I"ll hit the LLMD. I'm so broke, I'm trying to get all this done under insurance first. But, I will go to the LLMD, I'm not going to live like this all the time.

Hi Mentalcompass,

So sorry to hear you are having such troubles!

Several months ago after having way too many bizarro symptoms-- some of which you describe for yourself-- I researched Lyme as a possibility and began to strongly believe I had it.

Being unable to get a doctors appointment quickly enough-- and not wanting to waste even one more second in treating my posssible Lyme disease--- I did put myself on Doxycycline which I keep on hand (through my veterinarian) for my dogs and horses should they present with Lyme symptoms which are very specific (IMO). It's exactly the same drug.

After two days on Doxy and for the next several days I had a major Herxheimer reaction (which I also learned about through research) and felt my reaction was most definitely in keeping with a Lyme herx.

Upon seeing the doctor--- a supposed LLMD--- BAH !--- he felt all my symptoms were atypical for Lyme (which blew my mind) and that I probably didn't have it and that all my pain was 'in my head'.

However-- he did do a blood test that came back 'indeterminante' (as I might have already mentioned) which further confirmed in his mind that I had only been exposed to Lyme at some point in the past---but don't have a current or active infection!

BUT he did give me a one month prescription for 'people Doxy'....and sent me on my way. He never even suggested I make another appointment with him to follow up! He also grumbled a poo poo on the herx reaction I had , as if he didn't believe in that sort of thing.

Interestingly, I started to get better the longer I took the Doxy. Then I went to my PCP because my stiff neck, though much better, really wasn't going away and my elbows still hurt.

Long story short--- finally I had that bad relapse due to my PCP telling me to go off the Doxy to see how I would feel. He didn't believe I had Lyme either, due to a second blood test (Imugen) that came back negative. Apparently this particular test is on accurate (????) for very early stages of Lyme. So BAH ! again.

Now I have new doctor who put me on the Amoxicillin (said Doxy didn't work well enough for me for various reasons) and I am on the mend once again!

Stiff neck that was once a 10 on the pain scale is now a 1 and some days it's gone completely along with all nerve and muscle pain--- and I have only been on the Amox. (500 mgs. 3 Xday) for a week!

I feel like a new person--- this doctor does believe in the Herx reaction-- and is treating me for Lyme on my symptoms-- not blood tests.....although....I personally would really like to know if do in fact have Lyme. Perhaps I'll never know....or maybe not for a long time.

Quite frustrating! .

Though I certainly am not a doctor and can NOT in good conscience suggest that you self treat with any Lyme specific antibiotics you might have on hand.....that is exactly what I did and got results.

I knew I wasn't allergic to it...so what could it hurt to self treat until I could get under the care of a proper LLMD.

If I had not taken the Doxy (myself) when I did, who knows how many more months could have passed before I got any sort of treatment for Lyme. Even still, I could be in the chronic category with a long road ahead of me.

Moral to my story: I became my own health advocate, took matters into my own hands and self treated. For me personally it was a good decision.