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IgeneX Test

So I finally got my doctor to agree to the test. She said i must request the kit from the Lab and bring it in. Only problem is now I can't find that request slip on the Igenex site anymore!?  Can someone help me? Maybe i am just blind.

What is it I have to do to get the test for free, shipped to me, I mean the kit for the test.

Thanks
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Avatar universal
About how the docs proceed and how they interact together:  it's different for everyone.  

Some docs don't want to have much of anything to do with other docs you may be seeing, and that distance is because the more progressive ILADS-type MDs and the less progressive other docs simply don't see Lyme the same way.  Lyme is a still-developing field of medicine, and the two camps have different views when it comes to diagnosis and treatment.

So when you say that your doc "maybe would consider working with the other doc", that's the caution that Dr Maybe is setting forth -- I'm guessing Dr Maybe is NOT an ILADS doc, and doesn't want to get tangled up working with a doc who takes the ILADS approaches to diagnosis and treatment.  That's just the way it is, and since all docs are held to a very high standard by the medical community not to diagnose or treat in some way they believe is wrong, the LLMDs are often viewed with suspicion by the other docs.

There are indeed some oddball docs out there in the medical world, and it takes some navigation among them to get the best of both worlds.  The ILADS docs and the IDSA docs [IDSA = Infectious Disease Society of America] simply have different views about how serious Lyme is or is not and also how to test the patient, how to diagnose the patient, and  what meds to give for how long.  That pretty much covers all aspects of medicine.

I'm not medically trained in any way, and I went through the confusion of ILADS vs IDSA docs till I realized they just don't agree on a lot of things related to Lyme and its co-infections.  There are quacks all over the medical field, so at some point each patient has to go with one doc's views over another.  I went with an ILADS doc and would definitely do so again.

Keep in mind tho that just because a doc belongs to ILADS (it's a voluntary organization) doesn't mean the doc knows what he/she is doing ... but that is true of every aspect of the medical world, not just Lyme.  So that's the basis of the doc saying to you that she would consider working with the other doc, "but ... wait and see how things pan out."  If the non-ILADS doc thinks the ILADS doc is totally wrong in diagnosis and treatment, then the non-ILADS doc has an ethical obligation to say so or at least to withdraw from the case at hand.  So the non-ILADS doc is currently saying 'let's see how it goes', and if the ILADS doc proceeds in a way that the non-ILADS doc feels okay with, then the non-ILADS doc will be more likely to stay in the loop on your case.

Every situation is different, and the good news is that you have the power to decide which way you want to go, and also to change your mind later if you decide to.  I know it sounds daunting, but you'll know which way to go when the time comes.  And if you do later change your mind, you can do that too.  It's a hassle, but getting rid of Lyme is worth the trouble!

About the new page format here, I think the techies at medhelp are still tinkering with the software, so they road-test a new version, and then take it down for bug-fixes, and put it back up again.  The newer version (NOT the one I am typing on right now) is, I think, supposed to be sleek and snazzy, but I think it's too simple for the complex chains of messages we tend to post here.  That is typical of Lyme:  confusion!!

I too hope MedHelp will realize that the new approach of tiny little answers to simple questions just doesn't work in a field as complex and constantly changing as Lyme and its co-infections.  

   ====================================================

        ===>>>   [MEDHELP, ARE YOU LISTENING??  Please don't mess up a good thing!  We need the flexibility of the old message structure -- it's just the way Lyme disease works:

     -- much that is still unknown about the infection(s),
     -- many different presentations by different patients,  and
     -- much controversy about how to diagnose and treat the patients.]

We need you, MedHelp!  Stick with us till Lyme is a thing of the past for everyone.
======================================================
Helpful - 0
Avatar universal
My doc also said maybe she would consider working with the other doc, but said to wait and see how things pan out. Don't know what that means, but maybe she will. I've had joint pain recently which i've never had, but that could be my activity level and the fact I changed things up a bit, yet I don't hear anyone else complaining.

BTW what is this new site format?? its confusing. Can i change to the old one?

Helpful - 0
Avatar universal
Good for you!  This is progress.  

It's been a while since I went through the tests myself, and there are new approaches being found all the time, so it sounds like you did fine!  

If the name or description of the test has the letters 'AB' in the description or name of the test, that may well be an antibody test.  Different labs label things different ways, tho, so don't worry:  more tests can be done in the next step if needed or advisable according to the doc(s).  It's kind of like an Easter egg hunt ... you never know what you'll find along the way.  :)  

Seriously, the first step of testing is to see what pops up, and then the doc will compare your symptoms with which tests you were positive or negative on, and that gives data for the doc to know which way to proceed.  

How long before test results are back from the lab(s) depends on how busy the labs are, but a few weeks is not uncommon.  The doc's office will call you when they have the results and to set your next appointment, if they haven't already projected a likely date.  

You're on your way!  Keep us posted -- sending you all good thoughts--
Helpful - 0
1 Comments
Thanks! I assume the lyme doc will want to get the antibody test if this one is negative? This is what I got ---BASIC LYME PANEL** (Requires SST)
Western Blot IgG, Western Blot IgM, Lyme IgG/IgM/IgA Screen (IFA)
Avatar universal
Thanks.

Ok, so i went to my PCP today. Gave her my doctors info and asked if she would be willing to work with the guy if my lyme is positive. She ran the test for me but we only did the basic test that igenex recommends on the site as we were not sure what else the insurance covered or not. I also couldn't find which one was the antibody screening.

I'm hoping that this basic one covers antibody!? But if not at least I've got something to bring to the lyme doc when i go, and maybe he will order another test if I need it. Our hospital will draw the blood they said. and i got the draw today.

So I wonder when will I know results?
Helpful - 0
Avatar universal
About costs:  there are some Lyme-oriented charities that may be able to help with dr fees, tests, and medication.  One is called Lymelight Foundation and another is called the Lyme Disease Association.  Both have websites.
Helpful - 0
Avatar universal
I'm going to ask her at my appointment this week. I'm not super hopeful she will want to get that involved :S

And there was only one lime doc in all of my state that would take me. I have no money so i can't exactly pay out of pocket even if I was reimbursed later.

The Sx I have had mimicked MS. Also digestive issues, bloating, pain, lactose intolerance, and inability to digest fiber. Fatigue, not feeling like I can get enough sleep. memory issues. Physical fatigue. And probably 98% of what MS patients complain of. My doc thought for sure at one point it had to be early sage MS. Cystic acne for no apparent reason, big red welts that hurt and stay for weeks then go away leaving scars or pits. never come to a head. Low low dose estrogen seems to help a little with it. Could just be natural hormonal changes.
I still mix up words or forget words in both languages I speak. Not quite as often now. But at times I can not remember the english word for something. or a word at all.

All my other labs and what not always came back normal, and now with winter here things have been MUCH MUCH better. Still some digestive issues.

OH! and the rupturing of tendons. I think there may be some involvement there too.

Headaches.

Quite a list really. I'm half tempted to check all the boxes lol. I don't know what belongs where, but I know not all of the tests are covered by insurance. Sorry this post is a bit messy. had to write quick
Helpful - 0
Avatar universal
     "Does anyone know what tests i have to check?"  Which tests are needed depends on what symptoms you are having, and since your doc is not very familiar with the overlapping symptoms of these several diseases (perhaps up to a half dozen of them), it may be difficult for the doc to know.  (I had two infections, Lyme and one other, but there can be more -- it depends on what the ticks are carrying.)
     The advantage of having an experienced Lyme doc is knowing what to test for, and once tested, how to treat, since the different infections often also need different medications from each other, so it gets complicated (and potentially costly) quickly.
     Checking ALL the tests on the form is one way to do it, but that is expensive too.  If your current doc can get in touch with a Lyme specialist who can walk through the possibilities with your doc, then that would (in my non-medical view) perhaps be the most efficient approach in time, travel and cost.
     You ask, "Do i check them all?  I don't know which and my doctor doesn't either."  This really needs an experienced Lyme doc.
     You say:  "I can't wait for my lyme doc since they are 900 miles away and a second trip just for the blood draw is too much cost."  I would suggest that your MD try to locate a Lyme specialist who is willing to work with your doc long distance:  your current doc has medical knowledge, just not specific to Lyme, and that bridge between the Lyme specialist and you the patient can perhaps be done by your current doc.
     Run that approach by your current doc, and see what he says.  Lyme treatment often (even usually) takes months, not weeks, so if you can set up a 'long distance' arrangement between your current doc and the far-away Lyme doc, that may be the most efficient way.  If the faraway doc you are considering now will *not* agree to that kind of long-distance coaching of your doc, then I would try some other long-distance docs who may be agreeable.  Try calling ILADS for referral to a doc who is willing to coach your doc long distance.
     If none of this works out, pls post back and we'll brainstorm some more.  Take care! -- I had Lyme and one other co-infection, and it's definitely worth getting rid of.
     -- PS one more thought:  if your doc doesn't have another doc in mind to work with at a distance, suggest that your doc call ILADS (International Lyme and Associated Diseases Society) to ask for suggestions on how to handle the long distance issue. --
Helpful - 0
1 Comments
Another (perhaps better) thought:  
You say:  "I can't wait for my lyme doc since they are 900 miles away and a second trip just for the blood draw is too much cost."
Has the doc who is 900 miles away already refused to work with your hometown doc in the manner suggested above?  If not, I would start with a call from Dr Hometown to Dr Far Away, to see they can work together long distance.
Avatar universal
Does anyone know what tests i have to check? Do i check them all? I don't know which and my doctor doesn't either. I can't ait for my lyme doc since they are 900 miles away and a second trip just for the blood draw is too much cost.
Helpful - 0
Avatar universal
--- here's the link from the website:

https://www.google.com/search?q=igenex+test+menu&ie=utf-8&oe=utf-8

--- if that doesn't work, then search online for the phrase
                        igenex test menu
and it should take you to the right place on the IgeneX websites

--- and if THAT doesn't work, then search online for
        www  [dot]   igenex    [dot]   com
which will take you straight to the IGeneX website where it says 'Welcome to IGeneX, Inc.', and below that is a link, 'test requisition form'

let us know if it doesn't work, okay?  best wishes!
Helpful - 0
1 Comments
OK, that one worked! I found the form. Now what tests do i check? My doctor doesn't know and says I can request the tests. What stuff should i check?? Its kinda confusing with so many different options.
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