posted
So, my son seems to be relapsing. Unfortunately, we no longer live in the area we did when he was first diagnosed and therefore do not have access to the expert we did at the time.
His symptoms include anxiety, hyper-sensitivity, Asperger's/high functioning Autism (newly diagnosed this year), and of course the one that has me worried the most: when he was on antibiotics a few weeks ago for an upper respiratory infection he woke up screaming with joint (knee) pain and had some really bad headaches/migraines.
His doctor is not very Lyme literate, but he's willing to try, kind of. He didn't want to sign off on the form for Igenex tests because he was worried about how much they cost. Instead, he wants me to take my son to a local lab (which his insurance will actually cover) first. And if those labs don't show anything he'll consider the Igenex test.
There are only two labs in our area: LabCorp and Quest. I know I've heard some negative things about both as far as Lyme and co-infections are concerned, but I think I've also read some positive reviews.
So, for those of you who have used LabCorp and/or Quest, which one was better? I guess I'm really looking for the lesser of two evils here... or at least the better of two not-so-greats.
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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posted
It was the cost for the co-infection tests that really had him worried. It all adds up and since my son is on medicaid yes, cost is a concern when the "crappy labs" will do tests at no cost.
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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posted
Also: does it matter which day of the week the labs are drawn? I know it does for some of the Igenex ones, but wasn't sure what happens when a "local lab" does it.
This was so much easier when I had a competent LLMD who knew what he was doing so I didn't need to worry about these details.
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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posted
Both of these labs showed negative for things I did have. ONLY Igenex showed my Lyme. But at least LabCorp picked up my mycoplasma?
It does matter what day fo the week, Monday through Wednesday usuually, as they have to be mailed off. Do it then if you want the best chance of an accurate result.
Find a new LLMD!
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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quote:Originally posted by little_olive: Find a new LLMD!
Much easier said than done, especially when looking for an LLMD who will treat a chronic, pediatric case AND take medicaid.
As far as I know, there are none in my state (and before someone sends me to the links to search within your state, I've done that, several times).
My own LLMD isn't the greatest, but I stay with him because he's the only one I've found that will take my medicare, and at least he's willing to keep trying and keep me on the meds when they seem to be helping. But I do not want to take my son to him because a) he doesn't take his insurance and b) I usually have to wait several hours... and that's not good for a kid with Asperger's!
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't believe that Lyme Disease can be treated "properly" except by a LLMD (lyme literate medical doctor).
As far as lab work......Labcorp worked out okay for me in the end. It took 3 Western Blots, but I finally got an IGM positive from labcorp. I have heard of others that also got positives from labcorp. Don't know much about Quest.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Ok, I guess we'll go with Labcorp... next week. Unfortunately, getting my son to break his routine to wait in line to get his blood drawn is a nightmare. His Asperger's symptoms (especially regidity and anxiety around routine)have been awful lately!
I've had my blood tested about 10-20 times in the last 6 years. The first time was through Stoneybrook and it was "indeterminate". Treated it for several years, felt better, stopped treatment. Relapsed about 6 months later, re-tested through labcorp, only 1 band was positive... started back on treatment (been on and off ever since) and finally last month for the first time ever had an actual positive test (though labcorp because that's what my doc uses and they're in his office so it's convenient).
My son was originally tested through Igenex and tested positive for Lyme and Babs. But that was 4 years ago and we hoped that after a year of treatment it would never come back.
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I think it's worth a try to get tested at Labcorp first. I had Lyme and some coinfections show positive through them.
If you know what day you are going to Labcorp, get online and set up an appt. That way when you get to the lab at your appt time you will automatically be taken care of first. No waiting!
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Another thought, if for some reason your local lab does not accept appts call the lab directly and explain your situation. They may let you come a few minutes early in the am or after lunch so that you can avoid the crowds. Anything to help your son remain calm will help them to have an easier job when it comes time to draw his blood.
Posts: 5237 | From here | Registered: Nov 2007
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posted
"My son was originally tested through Igenex and tested positive for Lyme and Babs."
--
No need to test again.
Going with LabCorp is at least worth a shot. I didn't mean to sound insensitive. Many people don't realize how inexpensive Igenex is for the Western Blot testing.
I tried to look up the cost of LabCorp's WB but couldn't find it.
Does anyone know how much the test at LabCorp is??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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posted
If they are your only options for labs definately go with Labcorp.
Quest can't test their way out of a burning building IMO. I've used them, don't have any faith in them.
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
My test was with Quest.. Lyme Western Blot showed positive bands. When I saw the LLMD yesterday, some of my test were sent to igenex but they use Quest.
I have also had test through LabCorp..Guess one is as good as the other.
Good Luck, phyl
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Thanks for the advice. I've scheduled an appointment at Labcorp for Monday morning an hour before school starts. If I start preparing my son for it now maybe he'll actually be ready and we can get to the appointment on time and have little hassle. Maybe.
At least these labs should all be covered by his insurance. And, if we nothing comes back positive, we'll pay the big bucks and go back and send the blood to Igenex.
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Did you actually get a real CDC positive IgM result meaning two bands on the same test or are you combining positive bands from multiple tests? I remember you once had a 41+ and then a 23-25+ another time. Did they show together at some point? Just curious.
quote:Originally posted by sutherngrl: I don't believe that Lyme Disease can be treated "properly" except by a LLMD (lyme literate medical doctor).
As far as lab work......Labcorp worked out okay for me in the end. It took 3 Western Blots, but I finally got an IGM positive from labcorp. I have heard of others that also got positives from labcorp. Don't know much about Quest.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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