Doctors are <swear word> annoying at times.

[Erin]

I had asked one of the nurses at my doctor's office this morning what test I had last year for Lyme. She called back and said that I had the Enzyme Immunoassay (EIA) test.

I asked if they did a Western Blot. She said no, that they ONLY do that if the EIA was postitive. I asked if I could have a Western Blot done....she again repeated that they ONLY do that if the EIA is positive...and that they're following the CDC recommendations for testing for Lyme....pretty much made me think that they wont budge on that line of thinking. The nurse also droned on about how the rash I had "had nothing to do with Lyme..." She insisted that the Lyme rash ALWAYS has the bulls eye, and that since my rash itched that it wasnt a Lyme rash.

Where the heck can I find a doctor that will actually listen to me? I'm almost positive that my neuro was right about me having MS, but I have just enough suspicion that I want them to test me again for Lyme. I just dont get why they wont listen to me.

Did I read most of the research right that the Western Blot is the test that's got a better track record for finding Lyme than all the others? Or have I been reading the wrong medical websites?

I just called Igenex to send me a (free) test kit for the Western Blot. Since I cant get my doctor to order it for me, I can at least do it independently. Igenex told me that I have to have a doctor sign off on it for them to do the test. If I cant get my doctor to do it, then I'll see if my dad or aunt (both nurses) can find a doctor that will.

The lady at Igenex that I talked to even looked in her database to see if there were any doctors that were Lyme literate in Nebraska. Closest she found were two doctors in Kansas City, Missouri. I guess I might be going on a road trip.

I'm just tired of people not listening to me. (I was ignored for a long time before I got the MS diagnosis too) I probably dont have Lyme, but I have just enough suspicion that I need to make sure.

I dont see any harm in getting the test done...I'll just have to pay out of pocket for this instead of trying to go thru insurance.

[Sonsie]

So sorry you're having to struggle. It's part of life with Lyme, I guess. :mad:

Your doctor's nurse will parrot what he tells her. He signs her pay checks. If you want to change minds, you need to work on the doctor. The whole concept of testing is bogus, because LD is a clinical diagnosis. I wish such highly educated people could get that through their heads. Yes, you will also want to test for other things, like MS and lupus, to rule them out (or in).

I got started by paying for my own IGeneX tests. I simply told my very-anti-LD physician the following: He was going to sign to authorize the tests, because I dropped a lot of money on him every year. I don't care what his opinion about LD is. I could afford to pay for the tests myself, and so I was going to do it. (Spending money frivilously is not a sin.) And I reminded him that I am a person who checks out all angles, and this was an angle I wanted to look into.

He signed. He also saw to it that his office "forgot" to call me when IGeneX faxed the results to him.

The Lyme bands lit up like a neon light. (I knew they would -- I'd already self-diagnosed clinically.) But because my doctor had NO clue how to read the test results, he wrongly concluded when he saw them that I was negative, and I had to listen to a bunch of smirking about that. I took the results to an LLMD, who didn't really need them to make the diagnosis -- I was a poster child for LD at that point. But over the years, it's been nice to have them as some sort of baseline, I guess.

Fighting with my doctor was a very small price to pay, in the end. I am getting better, and he is still close-minded. Do I need to mention that he is now my ex-doctor? ;) :p :mad: :D

Here's what I say to you: You go, girl! :) You are worth fighting for!

[Erin]

I've already been told that I have MS...and I'm 99% sure that that's what I have, but I just have to make sure, since I can remember at least 3 tick bites in 99 (my dog kept getting hitchikers), and one in the late 70s or early 80s after a Camp Fire Girls camping trip...the bites, and the appearance of a rash in early 2000 are enough to make me want to make positively sure about the diagnosis of MS, just in case.

It's just maddening that my regular doctor has to be a putz about it and not listen to me.

[Sonsie]

I've already been told that I have MS...
MS is often part of late-stage Lyme. I know several people in this situation, and Lyme treatment is making them better. The appropriate treatment is for LD in this case, not MS, in other words.

I also know a woman who cannot get LD treatment for her MS. They keep pumping her full of steroids and the like, and she keeps getting worse, of course. Very very sad.

[Erin]

I've read a lot about MS and Lyme, and since I cant tell the difference between the two based on the symptoms, I really want to make the doctors make absolutely sure which I have.

It's not so much the doctor being a putz about this, as it is the nurse being such a <pregnant female dog> about the way she spoke to me yesterday.

She was trying to tell me that it's "just a coincidence" that most of my problems started AFTER I got the tick bites. *sigh* As if she can look into my body and my blood and see that I dont have any little spirochetes or not.

Hopefully I'll be able to find a doctor to poke me with a needle and draw the blood for my western blot test kit that Igenex is sending me. I have an appointment at the MS Clinic the first week of June. I might just wait till then to see if they'll do the blood draw for me.

[Sonsie]

She was trying to tell me that it's "just a coincidence" that most of my problems started AFTER I got the tick bites.
Like I've said, you should not let these people even LOOK at you! :eek: They clearly don't have basic medical education. And, worse, they seem proud of it. You will never get responsible attention from them.

I've read a lot about MS and Lyme, and since I cant tell the difference between the two based on the symptoms, I really want to make the doctors make absolutely sure which I have.
MS doctors are clueless about LD. Avoid them. You need to find an LLMD. Then that doctor can tap you into specialists who can deal with MS (and other things you'll likely discover you have). Please spend all of your energy at this point in getting an appointment with an LLMD who belongs to ILADS.

I'll be able to find a doctor to poke me with a needle and draw the blood for my western blot test kit that Igenex is sending me
As I've already mentioned, you need a nurse who is willing to handle the blood correctly once drawn (refrigeration is not the point -- other things are also important). The doctor will delegate this to a nurse. So you have two hurdles to jump over, if you plan to rely on any old doctor's office. Have you called IGeneX to ask what labs in your area are trustworthy to do this? They can tell you what questions to ask, to "screen" for competence, if they don't have specific names.

[Joe]

"Doctors are <swear word> annoying at times."

Doctors are extremely annoying when they are letting you die slowly. I've been searching for a LLMD for over four years.

[Ginny43]

Wish doctors would say they don't know.
Last month I had a sudden loss of vision in right eye. After being told that it was a CRVO (Central retinal vein occlusion), they said come back in two weeks. Maybe it's a relief to know why I had grey spots in front of most everything. My left far vision eye made it possible to still drive, but not read.
They said four things cause it - high blood pressure, glaucoma, diabetes, and high cholesterol. I can read some by wearing dark glasses, using a magnifying glass, and increasing size (control + key) on internet screen. I found that lyme can cause Branch retinal vein occlusions. If one, why not the other. When I told the vision people that I had lyme, the question was: You were treated, weren't you? I could only answer that I still had symptoms. The whole concept of chronic lyme is dismissed out-of-hand.

[Ginny43]

Sorry wasn't done yet. Key control affected by vision loss, I guess.
So I started taking Bilberry, Eyebright, Horse Chestnut, cinnamon, and aspirin. Then returned for follow-up. Thankfully I could see a little better. The gray spots were smaller, although there are probably more of them. After the examination, I was directed, "Whatever, you're doing, keep doing." Come back in a month. There were no questions about what I was doing and I volunteered none.
This is new territory for me and I'm fully convinced it's just another affect of having lyme bacteria living, eating, and thriiving wherever they feel like. Devastating to me, life as usual for doctors.
Maybe somebody will just say they don't know. If it weren't for others prayers, I would be extremely difficult to live with. At least help comes from there.
Feeling blue. Wishing doctors would at least say, "We don't know,"
Tomorrow will just have to be better.

Ginny