ID doctor appointment

[Guest guest]

I promised to report back on my son's ID doctor appointment, and I have

been tardy in doing so. It's basically because I haven't drawn any

final conclusions yet.

I think the appointment went as well as expected, considering that the

ID doctors in Halifax have maybe only ever seen a few cases of acute

Lyme disease before, and have only recently seen one or two other

people claiming chronic or late Lyme. (I do suspect there's more Lyme

around here than what's recognized, just no awareness of it.)

The subject of the CDC guidelines came up pretty quickly since our

IGeneX Western Blot results are only positive as far as the IgM, not

IgG, but we have had symptoms for years. Lyme doctors have no problem

with that because to them the IgM signifies active disease. It confuses

other doctors though, because it looks to them like we were just

exposed. So of course I pointed out that the guidelines are only meant

for reporting.

Then he said that Western Blots aren't very accurate because of

cross-reactive bands. So I pointed out that our Lyme pediatrician

pointed out that my son has many of the Bb-specific bands positive.

(Yes my son actually has a diagnosis, but it's not a Canadian

diagnosis.)

He wants to repeat the serology and I told him my concerns with the

Canadian Western Blot test. For instance, they only test 3 IgM bands.

(For another thing, they rarely report anybody as positive, but I have

no proof of that, just what I hear.)

So, this sounds bad so far, but he did listen to me and he is fairly

personable, not pompous like some. Also, he had no problem admitting

that he wasn't familiar with Dr. Fallon's studies at Columbia -- so he

doesn't think he knows it all already. Another good sign was that he

accepted the notebook of Lyme guidelines and studies I had carefully

put together in case he was " too busy to have kept up with the Lyme

literature. " Now, if only he reads it, we might actually get somewhere!

Next my son is being sent to a neurologist and rheumatologist, and I

have to see another ID doc because this one is pediatrics only. Darn, I

hope the other one is okay. What they want to do is start all over and

determine for themselves what's the matter with us. He's not promising

that they'll come to the same conclusion. I've already seen oodles of

doctors, so I'm not sure what starting over means for me. New useless

tests?

Well, all I can say is that at least we've finally got someone's

attention. I was very clear that we need help and somebody needs to

take some responsibility for us. For years I was ignored and shoved out

of various offices and I'm not going to accept that this time.

I'm afraid I've got my hopes up, and it could be a hard fall. But could

it be possible that we might be able to access care here without

bankrupting ourselves? Not that they have any experience treating

people like us, but there is a Canadian Lyme doctor on the west coast

with whom they could consult.

Hope is a scary thing.

- Kate D.