Aa
How exactly does the process of getting the Igenex testing work?
Say, hypothetically, that I was able to convince the neurologist that I'm seeing in a few weeks to test me.
Would he have to order a test from Igenex, wait for the kit to come in, and then have me come back into his office? If so, how long does it take to get the supplies in? I was able to gather from reading forums that it takes several weeks to get results back, but about how long would it be before I'm able to get the test done after my initial visit?
Would he have to order a test from Igenex, wait for the kit to come in, and then have me come back into his office? If so, how long does it take to get the supplies in? I was able to gather from reading forums that it takes several weeks to get results back, but about how long would it be before I'm able to get the test done after my initial visit?
Ailean
No, it's never too late to get tested and treated! Firmly entrenched Lyme, though, is harder to treat and also usually takes longer.
Your post left me wondering----- did all your symptoms go away after you got treated for just three weeks? You must have been positive then and usually just 3 weeks won't help. Unless you started the treatment within a day or, at most, a week after you were bitten.
A positive (or a negative) from ANY lab doesn't necessarily mean you do or don't have Lyme disease. That's hard for most people to understand but I was always negative from Igenex. However a good llmd (different from a not-good llmd!) will know to treat for Lyme depending on other tests to rule in or rule out other diseases.
I hope you'll put aside your doubts and get retested (by Igenex). The problem being you will have to under the care of a doctor who really knows about Lyme. It sounds as if yours didn't if s/he only treated for 3 weeks.
No, it's never too late to get tested and treated! Firmly entrenched Lyme, though, is harder to treat and also usually takes longer.
Your post left me wondering----- did all your symptoms go away after you got treated for just three weeks? You must have been positive then and usually just 3 weeks won't help. Unless you started the treatment within a day or, at most, a week after you were bitten.
A positive (or a negative) from ANY lab doesn't necessarily mean you do or don't have Lyme disease. That's hard for most people to understand but I was always negative from Igenex. However a good llmd (different from a not-good llmd!) will know to treat for Lyme depending on other tests to rule in or rule out other diseases.
I hope you'll put aside your doubts and get retested (by Igenex). The problem being you will have to under the care of a doctor who really knows about Lyme. It sounds as if yours didn't if s/he only treated for 3 weeks.
I had lyme in 1999. I was given antibiotics for three weeks. I have doubts about the Igenix test because if it comes back positive it's probably too late to help me.
Oh, and I randomly remembered that, several months ago when I posted on the neurology forum seeking input, I received a message on here from someone suggesting Lyme as a possibility. I just checked back to see which user that was, and it was you. Several months later, here I am. lol
Thanks, everything makes a lot more sense to me now. :) I requested the test earlier today. The guy who responded to my email was very friendly and informative; I like him. :P I don't have a lab that I normally go to, though. I've always just gotten my blood drawn at the office of whatever doctor ordered the test, so I'll have to figure out where to go.
IGeneX requires a doctor's signature and some kind of ID#, maybe an FDA# or something like that. Each doctor has one. You have to make sure it is on the form, or IGeneX won't run the tests. It is so IGeneX can make sure the doctor is legit to order blood tests.
So, you have to get yourself and the order form to a doctor who will sign it. If your neuro won't, then go for the one the GLDA says will.
If the doc won't pay IGeneX up front, then you have to put your credit card # on the order form to pay for it. Then, you submit it to insurance for reimbursement.
Call the lab where you usually get a blood draw and ask if they can "spin" a vial. If not, ask which lab you need to go to. Then you have to take the kit and shipping materials to the lab for the draw.
The lab will have to spin the sample and then ship it out. (It comes with a box and a paid-for FedEx envelope.)
Then, you wait 2 1/2 weeks and try not to go nuts while waiting. ;)
So, you have to get yourself and the order form to a doctor who will sign it. If your neuro won't, then go for the one the GLDA says will.
If the doc won't pay IGeneX up front, then you have to put your credit card # on the order form to pay for it. Then, you submit it to insurance for reimbursement.
Call the lab where you usually get a blood draw and ask if they can "spin" a vial. If not, ask which lab you need to go to. Then you have to take the kit and shipping materials to the lab for the draw.
The lab will have to spin the sample and then ship it out. (It comes with a box and a paid-for FedEx envelope.)
Then, you wait 2 1/2 weeks and try not to go nuts while waiting. ;)
And, for the record, I just read over your post again, and it makes a lot more sense now. I just need to read things over several times; you were perfectly clear. It's how my stupid brain works these days.
Haha, no, I DO need as many details as I can get! I just hate that getting tested for this has to be so complicated whereas all I had to do to get something like my B12 level checked was walk over to the lab and let them stick my arm. I think what confused me was all of the stuff about your doctor having to research the lab and stuff; I guess I just assumed the doctor would be familiar with the various labs that are out there already.
I did send an email to IGenex last night asking if they could help me get started and gave them my phone number. Hopefully I'll hear back tomorrow since it's the weekend right now.
So I just carry the kit with me to the neurologist, tell him I ordered it, and ask if he'll use it? I don't really know how to word my request. heh. Gah. I guess is my neurologist won't do it, I can probably (maybe) just bring the kit to the doctor that the Georgia Lyme Association told me has been willing to test people in the past. I don't know if he'd just do the test that day, though, or what. I guess I can call and ask his assistant if the neurologist won't do it.
I did send an email to IGenex last night asking if they could help me get started and gave them my phone number. Hopefully I'll hear back tomorrow since it's the weekend right now.
So I just carry the kit with me to the neurologist, tell him I ordered it, and ask if he'll use it? I don't really know how to word my request. heh. Gah. I guess is my neurologist won't do it, I can probably (maybe) just bring the kit to the doctor that the Georgia Lyme Association told me has been willing to test people in the past. I don't know if he'd just do the test that day, though, or what. I guess I can call and ask his assistant if the neurologist won't do it.
Sorry! My desire to inform sometimes overrides the memory that I am supposed to keep it simple!
You could just ask for a Western Blot, but people who have been sick more than a year are much more likely to test false negative. Also, the genetic diversity of Borrelia is higher in the south (and in the west) and people in those places are also more likely to test false negative. (The test criteria was developed using blood samples from early stage, rheumatic patients in New England. Different locations, different bugs, different antibodies.)
Testing false negative will make it a lot harder to get diagnosed. Doctors think a negative always excludes it. I recommend you go for IgeneX. You are far more likely to show Lyme antibodies there.
Just go to www.igenex.com and email them or call to ask for a test kit to be shipped to your house. Then decide which doc to ask.
You could just ask for a Western Blot, but people who have been sick more than a year are much more likely to test false negative. Also, the genetic diversity of Borrelia is higher in the south (and in the west) and people in those places are also more likely to test false negative. (The test criteria was developed using blood samples from early stage, rheumatic patients in New England. Different locations, different bugs, different antibodies.)
Testing false negative will make it a lot harder to get diagnosed. Doctors think a negative always excludes it. I recommend you go for IgeneX. You are far more likely to show Lyme antibodies there.
Just go to www.igenex.com and email them or call to ask for a test kit to be shipped to your house. Then decide which doc to ask.
Maybe it would be better to not mention Igenex at all and just ask if he'll do a Western Blot in general. I dunno. This is all pretty confusing to me.
Holy...now I'm about 5,000 times more confused than I was when I posted this thread. Not your fault; there are just a lot of details, and one of my major symptoms is that I have issues with processing new information. I was hoping I could just ask him if he'd be willing to do a Western Blot through IGeneX and, if he was willing, he'd know what to do from there. I'm going to try reading over your post several more times to see if it begins to make more sense to me, but in any event, thank you for sharing your knowledge!
You can ask your neuro to request the test kit from IGenex, or you can request it yourself. They will send it free of charge via USPS Priority Mail from California. Give it two to three days to get to you.
I had no idea if my doc would agree or not, so I decided to have the kit sent to me. I filled out the order form with my info and payment info. (I had to read it several times. I couldn't remember the instructions by the time I finished reading them.)
Then I went to see my doc. I explained it to her and said that I didn't feel I had the time to try to get insurance approval in advance (she would have first had to do the research on the lab & the tests to be comfortable with asking). I was also worried that if she looked into the controversy, she might shy away and not approve tests at a controversial lab. I wanted to make it as easy as possible for her to say Yes.
She hesitated and said your insurance should pay for this. I agreed but said I didn't care. I was getting desperate. She said okay and signed it. I told her what tests I wanted and she said that seemed fine. The form requires some official doctor number (not sure what) so I had to get that from the staff. She is a stickler, but she was also sympathetic to me. She has been my doctor for a dozen years and she said she had never seen me so ill. She told me to go to the ER. I did, the next day, an hour or so after my blood draw for IGeneX. I just had to do it before I went into the hospital. I didn't know if they would be supportive or not. (They weren't. The hospitalist thought I wasted my money on the IgeneX testing and also discouraged me from going to the LLMD I mentioned.)
One technical thing to know...the blood vial must be "spun" at the lab that does the draw. My local lab location couldn't do it. I had to make an appointment the next morning at the hospital lab that had the equipment. Because my own doc ordered the tests, the draw and the "ship out" were completely covered by insurance.
I have heard good stories of neuros who were open and said "Sure." to IGeneX testing. I have heard others who dismissed IGeneX and told the patient not to mention Lyme again. One of the producers of "Under Our Skin" says one doc got hostile about Lyme and then sent her a letter after her appointment "firing" her and her husband as patients. Just be prepared for anything, know in advance how you will respond, and then you can handle whatever happens. Hopefully, you get a nonchalant "Okay."
I think most docs prefer to be the ones with the knowledge dispensing it to their patients. My first neuro was surprisingly humble, admitting to me that they often don't have clear cut answers. My second was nowhere near that, making assumptions and being dismissive about many of my symptoms. How you ask will matter.
If he's open to it, you might ask about insurance reimbursement and how your insurance company handles an out of network lab. (Some docs who use IGeneX pay up front for the tests and then bill the patient's insurance. Then they bill the patient for any remaining amount. If he has never heard of Igenex, I doubt he'll take this approach.)
A couple of my coinfection tests came in at ten and eleven days after they started the tests. (Add in the two days it takes for the samples to get there. Don't do the draw on a Thurs or Fri, or on Wed after FedEx pick up time.) Most, including the Western Blot, came in at 14 days. If you call for a test kit, then ask how long it takes these days.
Go for it!
I had no idea if my doc would agree or not, so I decided to have the kit sent to me. I filled out the order form with my info and payment info. (I had to read it several times. I couldn't remember the instructions by the time I finished reading them.)
Then I went to see my doc. I explained it to her and said that I didn't feel I had the time to try to get insurance approval in advance (she would have first had to do the research on the lab & the tests to be comfortable with asking). I was also worried that if she looked into the controversy, she might shy away and not approve tests at a controversial lab. I wanted to make it as easy as possible for her to say Yes.
She hesitated and said your insurance should pay for this. I agreed but said I didn't care. I was getting desperate. She said okay and signed it. I told her what tests I wanted and she said that seemed fine. The form requires some official doctor number (not sure what) so I had to get that from the staff. She is a stickler, but she was also sympathetic to me. She has been my doctor for a dozen years and she said she had never seen me so ill. She told me to go to the ER. I did, the next day, an hour or so after my blood draw for IGeneX. I just had to do it before I went into the hospital. I didn't know if they would be supportive or not. (They weren't. The hospitalist thought I wasted my money on the IgeneX testing and also discouraged me from going to the LLMD I mentioned.)
One technical thing to know...the blood vial must be "spun" at the lab that does the draw. My local lab location couldn't do it. I had to make an appointment the next morning at the hospital lab that had the equipment. Because my own doc ordered the tests, the draw and the "ship out" were completely covered by insurance.
I have heard good stories of neuros who were open and said "Sure." to IGeneX testing. I have heard others who dismissed IGeneX and told the patient not to mention Lyme again. One of the producers of "Under Our Skin" says one doc got hostile about Lyme and then sent her a letter after her appointment "firing" her and her husband as patients. Just be prepared for anything, know in advance how you will respond, and then you can handle whatever happens. Hopefully, you get a nonchalant "Okay."
I think most docs prefer to be the ones with the knowledge dispensing it to their patients. My first neuro was surprisingly humble, admitting to me that they often don't have clear cut answers. My second was nowhere near that, making assumptions and being dismissive about many of my symptoms. How you ask will matter.
If he's open to it, you might ask about insurance reimbursement and how your insurance company handles an out of network lab. (Some docs who use IGeneX pay up front for the tests and then bill the patient's insurance. Then they bill the patient for any remaining amount. If he has never heard of Igenex, I doubt he'll take this approach.)
A couple of my coinfection tests came in at ten and eleven days after they started the tests. (Add in the two days it takes for the samples to get there. Don't do the draw on a Thurs or Fri, or on Wed after FedEx pick up time.) Most, including the Western Blot, came in at 14 days. If you call for a test kit, then ask how long it takes these days.
Go for it!
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