Inf Disease doctors?

They will give you two weeks of abx and then put you on an antidepressant. Don't waste your time.

My Doc wouldn't even refer me to an infectious disease specialist. Even though I spent 45 minutes telling him my symptoms and he looked puzzled at the end. He said no there is no infection, so he prescribed my antidepressants and referred me to a psychiatrist instead.

I was sent to an infectious disease doctor years ago, she pretty much told me I was nuts because Lyme is not found is most of the USA.

ID is a joke. I went because I wanted my symptoms documented. That way they know there are lots of people with all these symptoms and no explanation. Even though I had a large bruise like spot on my back and a rash at the same time that all my symptoms started, they told me I couldn't have Lyme because my joints weren't swollen (even though they were all aching). They told me that I had "something brewing". When I told them that I was doing a herbal protocol for Lyme and seeing some improvement, they said it would help with other things! They also told me that ticks don't usually attach on the back. They also consider the ELIZA testing in Canada very reliable.

Teragram, I'm getting the message. Did F go there? I don't remember that part of her story.

I'm just so gun shy now after the Raleigh doc disaster. I cancelled my follow up appointment with them last week, and they called back to say if I hadn't called within 7 days, they would have charged me $100 for late cancellation. I smiled and said, "Yet one more reason to never, ever return to your clinic!" Oh, my. Gets me worked up every time I think about their clinic.

Anyway, no more thoughts about Duke going on now. I'm headed to J in DC.

The ID doc that my lovely insurance made me go to actually asked me if I saw the "big mansion on the water" that he assumed my LLMD lived in. Weird. Then he told me that Lyme docs are just out to make a quick buck. At the end of the consult, after reading my list of symptoms, he looked me straight in the eyes and said: "My dear, I'm afraid to tell you that I am POSITIVE you do not have Lyme, you have MS". . .

I declined having a spinal tap,
So, I was sent for a third trip to the all too familiar MRI machine to, once again, rule out MS.

ID docs will never change. They are trained to "think inside the box". For Lyme patients, they are a total waste of time and money.

I had a positive Igenex test in my hand and the ID doc told me I didn't have Lyme.

Sigh....my thinking was like yours in the beginning. I gave the ID doc a chance despite what I heard (they also accepted insurance-big PLUS!)

The ID doc I saw tried a "lil bit" despite my negative lyme test he ran, but the thing is that they have to follow their "CDC guidelines". This IS what they HAVE to do.

That ID doc gave me a month of amox (875mg bid) and then I got a picc line put in for a month after that and rocephin was administered. So a total of 2 months treatment.

I heard I was "lucky" to have received that much from an ID doc.

He said that basically after the picc line month of rocephin, anything after that would be "post lyme syndrome" and essentially just the leftover effects of lyme damage/aftermath.

Since then, I have clinically diagnosed by an llmd w/lyme + bartonella and labcorp positive test for babesia.

The ID doc did not even address co-infections which most of us have probably 80% of the time and cannot even get well from lyme unless the co-infections are addressed/treated as well.

This is why there was a big protest at the CDC last week. They (the IDSA) need to change their "guidelines" for testing and treatment of lyme.

If that ID doc wouldve treated probably a few more months...I would not be sick right now. I had showed improvement with his 2months treatment but it just wasnt enough. They cut you off. They follow their guidelines (period)

Lyme docs are willing to go further with more of an extensive treatment, hence why they dont accept insurance most of the time. They do not follow the IDSA guidelines. They have their own protocols for treatments and follow ILADS.

Gosh the frustration of this ongoing controversy gets me everytime I think about it.

At any rate, I just wanted to share that Im still sick because I gave the ID doc a chance unfortunately.

Best wishes to your health

xx's

Why thank you Mister Mike :) Its the full-honest truth *unfortunately. You are smarter than I was by bailing on the appt with the ID doc and going to see an llmd. Your PCP is just following his/her "guildelines" as well. Thats what theyre supposed to do when infectious disease is suspected...refer you to an ID doc....but then you get there and they dont know what to do when its lyme!

Its all beyond ridiculous how the system is when it comes to lyme. I really feel like this illness is on the RISE BIG TIME...and gosh I hope they wake up and make some changes!

MamaV & Mister Mike-please dont any hesitatation to take control of your good health! Its the #1 important thing in life...because IMO- the word "life" does not exist without your health.

Sincere Best wishes & xx's