He told me that I may have Lyme, Lupus or 2 or 3 other things that have similar symptoms to Lyme.

I'm guessing he thinks it may be Lupus, Lyme, a co-infection or Thyroid (I'm not sure, he didn't mention the other 2 or 3 things - and I was having so much information given to me that I was in over-load, I didn't think to ask what the other things were. Plus we were tired from the 2 1/2 hour trip to get there)

He will not treat anyone until he is positive it is Lyme. He said that if he treats me and I don't have Lyme, it could make me sicker.

I guess I tested borderline for Lupus and had one negative Lupus test in my past blood tests and he said that one negative Lupus test doesn't mean that I don't have it.

He said all my testing I have had so far for everything (Lyme, Lupus, etc) have all been in-direct testing and don't tell the doctors anything. He says I have not truely been tested for Lyme, Lupus or pretty much anything.

He said he seriously doubts I have Multiple Sclerosis because MS does not cause high CRP (C-Reactive) rates. Mine has been at 45 for about 8 months and just went to 95.

If I DO have Lyme, I will have 50-some days on an IV.

Unfortunately, my CareFirst does not cover him or his lab testing and maybe will cover only 28 days on the IV.

So, we are using my primary doctor and LabCorp for right now. He doesn't see the point in me paying $1100+ to use his lab when it's possible that I test negative on every test.

He said the only true test for Lyme is some DNA test.

I'm supposed to get these tests (his handwriting isn't too great so spelling may be wrong):

PCR Lyme, Babesia, Ehrlichia, Bartonella, Mycoplsma, Lyme Western Blot, Lyme Eliza, Lyme C6 Eliza, ANA, Anti-DNA DS, Rheum Factor, Anticardiolipin IQG+LQM, T3, 4, 7, SH

He told me to stop reading the internet, period. He said there is too much wrong information out there.

He seemed very informative. It was nice to have my husband there because now he has an idea of what I'm dealing with. And he knows that all of this is an actual illness - not nerves, not anxiety, not just exhaustion, etc.

This is the first doctor I have talked to that didn't say ANYTHING about anxiety!!!!!!

So, Monday I drop off the list of the tests I need, my primary will write up my LabCorp slip and off I go to get my blood tests.

Then it's just waiting for LabCorp to give my doctor the results. My doctor will fax the results to the LLMD and I'm to call him to talk about it and where we go from there.

I'm going to state things here that require me to tell you I'm not a doctor. Just an experienced Lyme patient, pretty much on the well end, who has read dozens of med articles and thousands of Lyme patient experiences.

"He told me to stop reading the internet, period. He said there is too much wrong information out there."

Red flag! He doesn't trust you to find information yourself? He wants you to just believe what he tells you without questioning it.

"He will not treat anyone until he is positive it is Lyme."

Does that mean he will not treat without a positive test? That would be flat-out wrong according to What the FDA says about Lyme testing and U.S. CDC: Lyme disease: diagnosis.

"He said that if he treats me and I don't have Lyme, it could make me sicker."

Only true if what you did have was left untreated, according to my knowledge.

"If I DO have Lyme, I will have 50-some days on an IV.

It seems unusual for a LLMD to specify a definitive time on IV. Most say it will be until you're sufficiently progressed. From my experience, that is almost certainly too short. And I hope he's going to combine that IV with oral abx, else you're likely to relapse later.

By the way, Labcorp has a bad reputation around here - I searched and there are many references to it being very poor at Lyme testing.

Sorry to cloud this for you, but I thought you should know.

Dan

The PCR test which looks for the DNA of the bacteria is a good test in that if one gets a positive result from it there is little question of whether they have Lyme. However, false-negative results are very common. Think of it this way, the bacteria likes to find little hiding places, get into organs and tissues, and basically get out of the blood stream so that when blood is drawn there usually isn't much if any bacteria to be found for the test to pick up. I don't know if that explained very well, I just woke up and am still a little sleepy.

I also wanted to mention that my first Lyme doctor noticed that I had a borderline test for Lupus and he said that he sees that a lot with Lyme patients. I don't remember why (I really wish I did so I could back it up) but he said it's not uncommon for Lymies to have elevated autoimmune tests.

Have you asked around here for names of LLMDs? I think it might be much better for you to find a real LLMD to take care of you.

Take care,
Annie

He says the reason he sets a start and end date for treatment is because he doesn't want to mess with the whole herxing thing. He said the symptoms for herxing could actually be herxing, or it could be that antibiotics is making you worse, or it could be that you are getting worse because the antibiotics aren't working at all. He said that noone knows which one it is, hence that he continues the treatment until the end date.

From the things you are telling us, this doc does not sound lyme literate. And, like others here, I'm NO DOCTOR... I'm simply speaking from experience and what I've been told by my LLMD's.

Just for one thing, I've tested negative on every PCR (genetic) test I've had for lyme, yet I tested positive enough on the Western Blot for the CDC to consider me postive at the same time.

It's very hard to get a postive PCR. What they're looking for is an actual piece of the Bb bacteria in your blood. Someone here explained it to me like this...

It's like trying to see if their are tadpoles in a huge pond by dipping your bucket in at one spot and pulling it out. If there are no tadpoles in your bucket, can your rightly assume that there are no tadpoles in teh whole pond?

So, if he will only diagnose you and treat you based on that one test, well, then, he might just miss the lyme!

And cutting the length of treatment to avoid a herx, well... that just doesn't sound kosher to me for a number of reasons.

If I were you, I'd proceed with caution...