new to this and i have a lot of questions

I think you'll like it here. We can all identify with your pains, and there are many ,including some doctors. Sometimes they can be a pain, too . Some are better than others, that's all.

I'm so sorry you had to go through that spinal tap. I had a very similar experience. I had an epidural when i delivered my third baby, the anesthesiologist evidently punctured my spine..they did a blood patch and it failed. So, another week of testing, all the while with a newborn and raging, undiagnosed Lyme disease and coinfections. I had another blood patch a week later and it worked. That pain is pure hello. Of course, they didn't even think to test for Lyme with the spinal fluid they extracted from the spinal tap. 'THere is no Lyme in Tennessee," or so I'm told. So, on the bright side, at least they are looking for it.

It sure sounds like Lyme is in your nervous system. Just because the test is negative, doesn't mean it's not there. Lyme is a stealth pathogen and very capable of 'hiding' and the tests for it are known, at least in the Lyme world, for being inaccurate. So , yes, it's possible to have lyme being responsible for your symptoms , despite the test being negative.

You may be feeling worse because of a herxheimer reaction. Have you heard of this?

Are you seeing an LLMD?

It's important to find a qualified doctor to treat you as Lyme is complicated to treat. If you need a list of LLMDs , pm Jaime and she will help you find one. I'll have a list soon, too. My doctor is in the South and I am better after suffering for ten years. I am really better.

You're right, i think sometimes they are just guessing,too.

Keep us posted.

Peace,

Connie

I started out with my blood tests coming back positive(I was very lucky to get that right away!), then went on Doxycycline for three weeks, and told I would feel like a new woman by the end of the first week........never did feel any better at all. They sent me on to a Neurologist to 'take care' of other problems, which included having three MRI's, one of which was on my brain.... they thought all my symptoms were from those other problems such as sleep apnea and the herniated discs in my back (like the tingling in my hands and feet).....as it turned out, while I do have those things and am being treated for them, I still wasn't feeling ANY BETTER!

9 months later we found out I still had not gotten better from the intial lyme infection in the first place! They just never retested me. I fired that neurologist, he was an idiot. He gave up trying to figure out why I hurt so much all the time, why I was so tired all the time, why I had all these odd symptoms that made no sense and couldn't possibly be related to anything else and I should see another doctor for that....he eventually told me all I could do was manage my pain and deal with it. I was furious.

Then back to my regular doctor. He at least recognizes Lyme when he sees it, but also knows he doesn't know enough about it to treat it properly. He did more tests and sent me to a different neurologist that he swore was lyme literate. Well....she was better...but not all that great either. She put me back on Doxy and sent me in for the Spinal(which they also messed up on me!) and it came back negative. I had blood tests done the same day for comparisons and those came back POSITIVE again! She said, I know you have this and I know you need IV treatment, but without the positive Spinal I can't proove it to the insurance company so I have to send you to someone else who might be able to get around it. Now I'm seeing an infectious disease doc and most everyone will tell you they are notorious for overlooking the obvious signs, telling you that you are crazy and it's all in your head and not treating you correctly...mine seems to be different. She is very smart, very lyme literate and working her ass off to get me what I need. I start a picc line tomorrow for IV Meds. I also found out that only about 7% of all spinal taps for patients with Lyme Disease come back with positive results.

Of course, I'm leaving out a lot of details but the point is, don't give up and don't settle for a doctor that doesn't know what they are talking about!! Find one that does and hopefully your battle won't be as difficult or as long as some in here.

We're all here for you to vent to anytime and ask anyone anything...we don't mind helping and passing along whatever information we have learned along the way!

Best of Luck and welcome to the group~

Lumbar Punctures are not suggested in initial testing for Lyme disease, because a negative result does not rule out Lyme. Antibodies for Lyme are mostly found in the meningitic form of Lyme, and hardly ever in any other form that affects the central nervous system. In fact, less than 13% of people with the late stage meningitic form will show antibodies in the CSF.

The time to do a spinal tap is when someone is showing strong neuro symptoms, even after they have been treated, and this is to rule out that it may actually be something other than Lyme.

Kewa, my suggestion is the same as Connie's...find a Lyme Literate doctor. Your symptoms are very similar to what mine were, and I spent lots of time and money going to doctors, only to be told I'm normal after every test. But in the end, I have neuro Lyme and am being treated for it.

As is the case with all forms of Lyme, it's how far along you are that counts the most. The later the disease, the harder it is to treat.

My suggestion is that you go to the Lyme Disease Association web site and download the symptom list. Check off what you have and contact a Lyme Literate Doctor. They have a referral list at the same site.

Good luck and be well.

Tom

Jaime