your rheumatologist, neurologist, or family doctor to run an Igenex western blot test for you? I have ordered the test. Have it still in the package at home.
Have called all 3 of my doctors and asked the staff if the doctor would run it for me. I was told they would run an ELISA or "Lyme Titer" and if I tested positive they would run a WB. I know rheumy uses Lab Corp.
Anyway.... does anyone have any magic words that I could use to convince or shame them into running this test for me?
I have an appointment with Dr. F. in Louisiana in August which I am having to travel 220 miles for as we have no LLMD's in Mississippi, and that's fine... I'll do it. But I just thought, wouldn't it be nice if I could get this test run by one of my doctors and know for sure whether or not I have Lyme and save myself the time and trouble, not to mention MONEY of having to make an uncessary visit to Dr F.
Any words of advice or wisdom would be greatly appreciated!
Thanks you all in advance!
-C
Posted by lea (Member # 15593) on :
I was able to convince my regular doctor to run the Igenex wb on me last week. I basically told him during an appointment that I heard this lab specialized in lyme, and since I was paying for the testing, no harm done.
I further said that the neuro does not think I have MS, and lupus has been ruled out, and all my bloodwork is coming back normal, so this was the next logical step.
Hopefully this helps!!
Posted by Celestia (Member # 15575) on :
Thanks Lea!
Very good advice indeed! I have appt with rheumy on 6/18 and one in July with pcp so I'm going to try that tactic and give them the chance to help me or turn me down. I have LLMD appt in August to fall back on, I was just hoping I could get some testing done before the LLMD appt, but I'm not going to let it get me down if they won't help me since LLMD will cover it all.
Thanks again!
-C
Posted by just don (Member # 1129) on :
Here is the problem with doing so,,,they will NOT collect on right day,,,they will not prepare it properly,,,they will NOT send it correctly.
In short they WILL screw it up somehow,,they ALL do!! AND if its positive OR negative it will really save the trip??
The test wont CURE you,,so the trip looks like the BEST option for you anyway!! Plan on taking that excellent trip LOTS of times before your all better!!
opinions of --just don--
Posted by Lymetoo (Member # 743) on :
Call and ask again and when they tell you no, ask if you can have that in writing.
Actually, demand that they put that in writing. That may scare them a bit!
Tell them you'll fax the letter you'd like the dr to sign. Content? "Dear Celestia ____, This letter is to inform you that I have refused to draw blood for the purpose of an Igenex Lab Western Blot test."
Posted by njlymemom (Member # 15088) on :
Lymetoo have you tried this, does it work?
Posted by Celestia (Member # 15575) on :
All good advice, you guys! Thanks!
Lymetoo, I too am curious if you have used this approach and what the doctor's reaction was??
Posted by Lymetoo (Member # 743) on :
I think someone here tried it. I think it worked. Wish I could remember who it was!!!!
I thought it was someone with a child. Yes.. believe it was. The pedi was refusing to treat the child for a recent tick bite, and someone here told the mother to ask for that refusal in writing.
They sprang to action if I'm remembering it correctly!
Posted by tdtid (Member # 10276) on :
Since I failed miserably to get my doctor to do the testing since I had THREE negative Elisa tests, I am not the one to give advice.
But I did want to say that wow Lymetoo...that's classic. I only wish I had been on the ball and tried that one. May not have worked, but dang, sure would make you feel "in control" more than what some of these ducks want us feeling like.
Great advice here. Hope something works for you, Celestia. Keep us posted.
Cathy
Posted by Celestia (Member # 15575) on :
Thanks Cathy!
So do I take it after the 3 negative Elisa's you went to an LLMD and tested positive on a WB?
Posted by The Future MD Lymee (Member # 15830) on :
That's such an awesome idea!! I still don't get what the harm would be in sending the lab out?! These guys shouldn't be practicing...
Posted by Celestia (Member # 15575) on :
I'm typing one up to take with me to my rheumy appt. on 6/18. We'll see what happens. He's a grumbly old curmudgeon anyway... he'll probably throw me out! ha!
Then I'll take my test kit to my pcp. He's much more laid back, but I'm not sure how he'll relate... he's the one that referred me to curmudgeonly old rheumy because he felt my fibro was over his head. Now I'm going to throw the whole "LYME" angle at him and it will probably freak him out.
My greatest fear, is that I will label myself as some kind of nut in an attempt to just get a simple blood test and somehow lose my insurance over it. I've had nightmares about it!
Someone who called this "The War on Lyme" wasn't joking!
Thank you all for your advice and antecdotes!
-C
Posted by Lymetoo (Member # 743) on :
Yes, the only risk is being "fired" by your dr. Doesn't sound like losing the rheumie would be losing much at all!
Keep us posted!
Posted by bejoy (Member # 11129) on :
I hope that approach works. If not, you could try going to a naturopath to draw the blood.
Posted by Keebler (Member # 12673) on :
-
Also, be sure the blood draw, how it's handled from the time you give the specimin to the time it's pick up . . . the carrier picking it up . . .the day/time drawn, etc. all has to be specific so the tests are done with good samples.'
You can only ship it out on certain days, I think M,T, or W. as Igenex must have it by week's end. Check their site or call.
And then call about pick up times at the place you'll have it drawn.
I would not make a big deal at the lab, but take in forms with instructions.
-
Posted by bettyg (Member # 6147) on :
celestia,
directions are in my newbie package
use edit, find, and type in IGENEX hitting enter until you get to detailed info !!
check your private messages! sending you a good idea ... forgot about this until now! Posted by Karol (Member # 15831) on :
Celestia,
Your fear of being presumed a nut case, se la vie'
Don't worry about it.
Knowledge is Power.
I once went into a doctors office armed and ready...full of knowledge and he asked me if I was a Auditor for the State.
I laughed the whole way home. I think Doctors think we, the patients should be stupid and humble.
Put your foot down and get what you want...that Igenex testing. You have been given some great advice here.
Posted by Lymetoo (Member # 743) on :
Yes, be sure it's sent in early in the week. I would opt for Mon or Tues.
That was funny, Karol! Posted by tdtid (Member # 10276) on :
Celestia,
Yes, I tested NEGATIVE three different times on the Elisa test. Once with my PCP, once with my Rheumy and once in the ER, so when we asked for more extensive testing, he said I didn't need it since I did not have lyme.
I actually had a N.D. at the time as well and HE is the one that pulled my blood for Igenex and yes, that is where I ended up testing positive. And the rest is history.
Good luck and let us know how it goes.
Cathy
Posted by Celestia (Member # 15575) on :
Thank You all! I won't stop trying, but it's looking like my first LLMD appt will be when it get's done by my luck. I just recently found out from the Herb Shop that I buy my supplements at that "naturopaths" are ILLEGAL in Mississippi! We are just so darned progressive here! Bwah!
I'm trying to keep a good attitude and plug away with my project. Have rheumy appt. Wednesday. This should be fun. On a good day he's a giant ___ (insert word of choice here). Can't wait to find out how pleasant he will be when I start demanding tests!
Thanks again and Happy Father's Day to all the Father's out there!
Posted by Melanie Reber (Member # 3707) on :
Toots,
I know that Theresa (Liska's Mom) did that for a few things that were denied her daughter. It worked!
M
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Melanie Reber: Toots,
I know that Theresa (Liska's Mom) did that for a few things that were denied her daughter. It worked!
Yea! Glad to hear it!! I remember her!
Celestia... Should be interesting. If he throws you out, refuse to pay for the office visit!
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