New Doc says: YOU-DONT-HAVE-LYME-DISEASE!!!!! Now what?

My insurance co. wanted me to see an in-network doc for Lyme treatment. There are none! So, I picked a local infectious disease doc hoping he could expedite the process of approving a PICC line or port (my out of network Lyme doc said I need minimum 6 mos. IV antibiotic based on my advanced neurological symptoms).
So, I went to the ID doc. Wow!! He was adamant stating I didn't have Lyme disease - more likely MS. I am so confused on what to do next! Here is a short recap of how I ended up at the ID doc in the first place:

Summer 2012 - found tick on my belly. No rash, no fever, so, I didn't treat it. Really stupid of me, and I could kick myself. Heck, I had Lyme disease 23 years ago, as did my sister and 4 of our dogs. We live in an endemic area.

In the fall of 2012, I started having an intolerance to alcohol- especially wine. If I had a few sips I would get tipsy. Strange. I thought I was just dehydrated, even though it happened on more than one occasion. Then, in April 2013, I started getting vertigo and had balance issues. I saw many types of docs. They dx migraines; inner ear infection; sinusitis. Really? I started to have other weird symptoms (air hunger, rash on legs that would come and go, memory problems, hair loss, handwriting off, intolerance to cold, etc). Later on, I started to slur my speech and still no one could come up with anything. I had a few MRI images and CT scan, all unremarkable.
I said to my primary doc, "what about Lyme disease?" So, they did a Western blot test. It came out with only 3 positive IgG bands, so it was considered "negative". I knew that the tests weren't always reliable, so I went to another doc and convinced them to give me 2 months of azithromycin. I honestly didn't remember, nor did my sister, which meds to ask for but read that was a good choice.

Anyway, I didn't get any better (still kicking myself). I stayed on it for 6 weeks. I didn't get tested again till I took myself to a LLMD in late February. He took blood and sent it to Igenix. This time, it came back with 3 positive IgM bands, but according to CDC guidelines it was "negative". At that same time my PCP drew blood and again tested the Western blot and also tested for co infections. Everything came out negative (arghhhhh). I explained that I had been on 6 weeks of antibiotics before the blood was drawn but the PCP just said "negative, negative, negative results!

So far, the only doc that is on my side is the LLMD. As I mentioned in the beginning of this ramble, my insurance co is not going to permit IV unless I see a doc in network. Also, they are going to want at least 1 positive Lyme test. I don't see how that is going to be possible because I have been on doxy, azithromycin and atovaquone since I saw the Lyme doc in late Feb. I see the Lyme doc again soon and I want to get going on the IV!!!
Questions- how can I get a definitive Lyme test?
What test will help prove I don't have MS?? Maybe I do?
Can I get an IV without 1 test being 100 percent positive?

Any input would be appreciated. Even though I had this 23 years ago, that was just one quick month of antibiotic, without my life being turned upside down!

Thanks for reading my story. Sorry if it's a bit discombobulated, so is my brain at this point!!!

Have not heard of that. Is it different than the Western Blot? Antibiotic usage effect test?

I'd say now you should find another doctor. So many cases of MS are lyme, and MS is documented as being most prevalent in the northern parts of the country (hint hint)

You are not alone! Pretty much 90% of lyme patients are told that they don't have lyme - myself included. I also did not test positive.

Another alternative for yourself for testing is a PCR test. The elisa and EB are dependent on your body being able to produce antibodies. If you have a coinfection of bartonella, it is very possible that your antibodies are being inhibited, hence negative tests results. However PCR detects the bacteria rather then the antibody.

Just a thought. Sorry for the experience, unfortunately it is the norm. Insurance has to cover your antibiotics by law. I would stop contacting them and just submit bills and fight it.

~beth

Can I get insurance to authorize A PICC line without a positive Lyme test? I really need one. Has anyone on this forum recently had a PICC line or port put in?

Oh, I see now that you said, "in network." I guess it's not going to work then, unless you just show them your blood test as done by an LLMD.

The best labs are Igenex and Stony Brook, in my opinion.

Margaret