I am so scared :(

I don't have any additional specific information for you beyond what others here have shared.  But I wanted to add in another voice of "you are NOT crazy."  You are not!  And I am so so sorry that the very people that are charged (and dedicated?) to helping us all throw that phrase around out of their own discomfort of not knowing what is going on and their arrogance to admit that.  I have been down the "you have to be crazy -nothing can cause all these "strange" symptoms".  I heard "you need antidepressants, you're menopausal, you're anxious", etc etc etc.  Yes, I was depressed in a sense, because no one would help or believe me!  Yes, I was anxious because I felt (and still feel like) at times I was dying.  Yes, I was menopausal -and the point is ...?

So, here are my suggestions to take/leave as works best for you:

1.  Believe in yourself and what your own body is telling you.

2.  If you can get to a therapist, go.  I don't know where I would be without mine.  Did I go because "I was crazy"?  No, I went so I could have a place to talk and cry and feel safe and supported. It has been and continues to be a true lifeline for me.

3. Get your full test results - they can't deny them.  You may have to be quite insistent.

4. Keep coming to this board for support and information.

5. Find an LLND/LLMD who you trust and feel can help you in the ways that are right for you.

6. Try and find time each day to do something meaningful for you - no matter how small.  I know it feels like "this" is your whole life (I feel that way still at times) but it is NOT.  Whatever you can do - rest, take a short walk, listen to music you enjoy, take a warm bath, write - whatever you can do be good and gentle with yourself - do it.

7.  Believe in yourself and what your body is telling you. Yes, I repeated deliberately!

I am still "on this journey" and I remain grateful for the people and information here.  I remain stunned and deeply troubled by the ongoing insensitivity many of us are subjected to - because we need HELP!

You are right to pursue your health.  It's your body, it's your life and no one else's.  Hang in there.

Maybe it's time to do an Igenex Western Blot blood test.

If you are really wanting to get a positive test. (not that it will be positive, but your chances are better with Igenex - as they test for more strains of the lyme bacteria)

To try to cover themselves when the insurance companies turn them in, or someone that isn't happy with services received at that office sees an opportunity to 'get even' - and turn the doctors in to the medical board for using high dose abx or "inappropriate" treatments due to no real evidence of an on-going infection.

This is also why we are so secretive of the doctors that treat us - they get turned in. People will actually pose as Lyme patients to get into the office with an appt, and will set the doc up to get treatment, then turn them in.

Yet another reason to push for better testing and protection for our doctors in our states. There have been a few - a very few- states that have passed legislation that protects these doctors from losing their license and their practices, as many have done.

Yes, there are people that do that. They get some kind of satisfaction from it is all I know! I don't understand it.

NO, go get that heart monitor. There are certain doctors that you will still have to go see, but always keep your LLMD/LLND in the loop and be sure they get all the results. The LL doc will do all they can, but they can't be all to every patient they see - they are very busy since there are only a handful.

Lyme can and does cause some very serious heart issues that must be monitored and watched. Most will be cleared by treating the Lyme disease though.

Keep your Lyme literate doc in the loop and ask them all kinds of questions - they will let you know how to proceed. If you need extra help, we are always here to help you find your way through all of this!!