Okay, I had an appt today with a LLMD in GA. He was very nice, came across as very knowledgable about Lyme Disease. I got his name from TWO forums including this one. He suspects I do not have Lyme disease b/c my C-reactive protein is elevated along w/ my Sed Rate, which he says is probably indicitive of auto-immune as opposed to Lyme.
Anyway, we decided to run the Western Blot just in case. Well.....I was reading the post on this forum explaining the Western Blot test, and it says it is it very important to run the test Mon - Wed and have it expressed to the lab so that it doesn't sit over the weekend, causing more difficulities in the test results.
My blood was drawn at 2:15 pm today. (Thursday)
Does this mean I just wasted my money completely????? Oh I am so frustrated!!!!!!! Please someone help calm me down.
Thank you, Taylor
Posts: 23 | From GA | Registered: Aug 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Taylor,
We've always sent on a Monday morning and when calling Igenex have
Found the delivery 3 days later.
They get it on Thursdays. Maybe that is because I am in Louisiana.
It is a 3 day shipping box they send to you.
So,
Maybe one more day (Monday) won't make a difference.
See what the results are first.
At least you didn't do what I did and waste my money at Quest labs.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hmmm.
Though perhaps TYPICALLY associated with autoimmune diseases, those tests are really just markers of inflammation in the body.
Such as an infection.
Such as by borrelia burgdorferi.
I hope your IGeneX results are telling. Inasmuch as they can tell, considering some people are seronegative despite having full-blown, proven lyme.
Keep us posted!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Yes, high sed rates early on told my GP (lyme literate)that every symptom I was complaining about was truly happening. Sed rate is also indication of inflammation, which lyme bacteria loves to inflame us.
My sed rate jumped to 72 early on. Even after 7+ years I can tell when my sed rate is elevated. I will feel my wrists,ankles and brain have a tight, I mean tight rope around them.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Well.....we did send it to Quest. Oh man I really did just waste my money, didn't I? I am really confused. This doctor came across as really knowledgeable (sp?) about Lyme and he is even involved in some heavy litigation involving an FBI agent who contracted Lyme while on duty. I was impressed.
But to send my western blot test thurs afternoon to quest and say an elevated sed rate indicates no lyme? Well, there's a lot going on with my thyroid and he mentioned a C-reactive protein test. I also have tons of antibodies, like ANA antibodies. He never went down a symptoms check list.
Basically, we decided to run the western blot first. If it came back negative, he is willing to do the IGeneX lab if I want. It sounds like there is no way my test is coming back positive.
Should I run the IGeneX lab? If so, which one?
Thanks for your help, guys!!!!
Taylor
Posts: 23 | From GA | Registered: Aug 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Run tests 188 and 189. The lyme western blot IgG and IgM.
They'll send you the kit free with a prepaid mailer.
Unlike Quest, IGeneX tests ALL the bands. Quest and other labs purposefully omit bands 31 and 34, the most highly specific bands in existence for lyme. So specific they made the failed Lymerix vaccine from those bands!
If you get a positive from Quest (and some HAVE, incredibly!), then you are good to go. If negative, do IGeneX.
Also, I have concern about an LLMD who uses Quest and thinks elevated inflammation markers somehow rule out lyme. I can only say "hmmmm..."
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well, ya'll, i didn't have any luck at all with western blot...came back negative for lyme and everything else.
only igenex showed positive bands.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
[QUOTE]Originally posted by Taylor: Well.....we did send it to Quest. Oh man I really did just waste my money, didn't I?
terrible lab....but MAYBE yours will come back positive...who knows?
I am really confused. This doctor came across as really knowledgeable (sp?) about Lyme and he is even involved in some heavy litigation involving an FBI agent who contracted Lyme while on duty. I was impressed. I never heard of any LLMD's in GA....except a sort of lyme friendly dr at the FFC.
But to send my western blot test thurs afternoon to quest and say an elevated sed rate indicates no lyme?
An elevated rate and even the ANA can still be from Lyme.
Should I run the IGeneX lab? If so, which one?
188 and 189
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Not so funny thing,
I just checked and noticed that my positive tests were drawn on Tueday and my negative ones on Thursday, with Quest.
Sorry, . If it does come up negative ask to be retested on an earlier day of the week.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Thank you for all of your replies! I am going to say that I think I misunderstood my doctor's credentials of being 'Lyme Literate'. I had requested a referral on this site and a local chapter and from both sites I got the same name. Both mentioned this doctor worked with Lyme patients and one mentioned he used IGeneX testing so I thought I was good to go and I thought I had a "LLMD" as opposed to the rheumatologist who laughed at me when I mentioned Lyme disease in Jan of this year as a possible cause when he had told me he had given up on coming up with a diagnosis. But I digress....
So yesterday, I was talking to the nurse about my symptoms and that I was recently diagnosed with RA. She said, "have you been tested for Lyme?" I said, "No, but that is actually why I'm here."
The infectious disease doctor looked thru my files said he's concerned about my thyroid and thinks it's more likely I have an auto-immune problem rather than lyme disease. As I mentioned earlier, he said people with Lyme don't typically have an elevated Sed Rate and C-Reactive Protein. We decided to go ahead w/ Western Blot. We discussed IGeneX, but I didn't have the kit with me. He said let's go ahead and send it to Quest, see what happens and go from there. We could do IGeneX at that point if I wanted to (if it's neg).
He talked at length about how rediculous it is that the CDC, doctors, etc don't want to acknowledge this disease. That it is very real. But that he just doesn't think I have it.
I really appreciate all of you out there in cyberland and I appreciate any feedback!
Take care, Taylor
Posts: 23 | From GA | Registered: Aug 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
That reminds me of when the doctor drew my blood for my Quest Western Blot.
It was on a Friday. I didn't even think of that before today.
Lucky enough, I had IgM band 23 come back positive.
Now I really wonder how "positive" I really was.
Darn. I wish I had found this site prior to that testing.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I just had mt igenx test drawn ,My LLD said get by Wed. then sent me to Quest with all parts necessary to get the test and fed ex it myself immediatly. I can only hope!!!!Now I'm wondering.
Posts: 161 | From midwest | Registered: Jul 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
gee, my thyroid started with problems after 2yrs. of lyme treatment
My llmd, a past president of ILADS says Bb messes with alot of systems...thyroid is one of mine it has fiddled with.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I was CDC positive from Quest.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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. If it does come up negative ask to be retested on an earlier day of the week. ![[Roll Eyes]](rolleyes.gif)
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