Hi, Since the immune system may no longer be producing the antibodies they are looking for, would you recommend testing for lyme and co-infections to be done before or after starting treatment?
Anyone with any experiences or knowledge of this would be greatly appreciated!
Thank you
[ 08-05-2010, 04:41 AM: Message edited by: beautifulblue ]
Posted by feelfit (Member # 12770) on :
Hey There Beautiful,
Can only tell you from my own experience that I was undiagnosed for at least 18 years. I DID NOT treat at all before testing.
My Western Blot was (9) bands positive on IgM and (2 or 3 )on IgG.
So, for me, I was still producing many antibodies even though I was very late stage.
Good Luck!
Posted by beautifulblue (Member # 27220) on :
Thanks so much Feelfit!
That's a long time... Sorry to hear you've had to live with this for so long.
Thank you! Good Luck to you as well! Posted by Lymetoo (Member # 743) on :
Sometimes taking a month's worth of abx will help more antibodies show up on the testing.
I had a negative test, then I took abx for 4 wks, then off for 2 wks, then the Western Blot again, by Igenex.
Still came back officially negative after having lyme at least 42 yrs. But several more bands showed up, including lyme specific ones. Treatment was successful!
Posted by beautifulblue (Member # 27220) on :
Thanks so much Lymetoo!
That's a long time...Sorry to hear it's been such a long time that you've had to live with this.
That's good to hear - that at least if tests don't appear to be accurate the first time around, there is still hope.
But I can imagine how frustrating that must be.
That's great that your treatment was successful!
Thank you! Posted by beautifulblue (Member # 27220) on :
Thanks again, I appreciate your posts
I wanted to include a response from Dr. Murakami a retired LLMD,(who consults)from BC.
Murakami Centre for Lyme: Lyme Chat Forum
"There is no absolute test for Lyme disease and the clinical diagnosis is the primary and most important method.
It is better to do the test before starting medications unless it is an emergency that cannot wait.
Coinfections can interfere with the treatment of Lyme disease therefore the wait is advised."
Dr.Murakami,MD,BA Bacteriology,Immunology Clinical Associate Professor Emeritus,UBC
Posted by littlebit27 (Member # 24477) on :
I tested before abx completely negative, only band 41 present. I've been experiencing mild symptoms since 2004. And if my "spider" bite was my tick bite then that's the year I was bit as well.
One month on abx, and two weeks off, WB came back Igenex pos, CDC neg.
I wonder now what it would show up but I can't afford to get tested again right now.
Good Luck.
Posted by LA (Member # 26353) on :
I was sick for over a year. I can never get IgG and IgM straight, but the one that shows recent infection was positive, the one that shows long term infection was negative (only band 41 was positive).
Posted by greengirl (Member # 25316) on :
I was sick 15 years. In all those years the Elisa always came back negative. Last winter, when I started putting this all together, a WB at a commercial lab was negative as were all my co-inf tests. This was prior to lyme treatment. My doc treats symptoms, though, and sees no need to spend money on Igenex, unless I have some personal need to do so, then he'd order it for me if I like.
I haven't tested, again, since starting treatment. So, can't tell you how the treatment will impact results. Once I'm feeling better I may want to test just out of curiosity, but, then again, I probably won't care at that point.
I have felt my immune system "kick in" since starting treatment, though. So, if I were to test, I'd probably want to do it when it seems to be "running high."
Good Luck.
Posted by greengirl (Member # 25316) on :
Oh, btw, there is a "provocation treatment" that some doctors recommend to optimize testing of kids who may have lyme-induced autism and also recommend to parents of those kids. You may find it helpful.
I agree with what you quoted from Dr. Murakami. He clinically diagnosed me with Lyme after 10 years. He also told me that Lyme will not be treated successfully unless co-infections are dealt with.
Posted by 17hens (Member # 23747) on :
littlebit, that's interesting about your "spider bite".
A coworker of my husband got a spider bite a few weeks ago. She's been very sick ever since and just tested highly positive for lyme thru her regular family doc.
She says she felt the bite, actually 3 bites. They hurt. But she never saw a tick.
Posted by Need Lots of Help (Member # 18603) on :
I have had lyme for 20 years. I was CDC IGM positive, but a few bands short of being CDC IGG positive. Which seemed completely crazy to me, but after reading more about lyme, it made sense. The lyme changes form so much, your body thinks it is always fighting a "new" invader.
Posted by Need Lots of Help (Member # 18603) on :
Oh, tested positive right away with no antiboitics previously. However, my doctor did the Igenex WB as my first lyme test.
Posted by IckyTicky (Member # 21466) on :
I was "sick" for 3 years but had Lyme symptoms for 20 years before getting tested. Below are my IgeneX results... without any antibiotics beforehand. My other kids tested positive as well except for my middle child, age 9. She'd been on prophalactic abx for over a year previously for a kidney/bladder condition and she only came back with two bands. But was clinically diagnosed as late stage neuro Lyme.
Posted by beautifulblue (Member # 27220) on :
Thank you! for all of your responses - I'm learning alot.
I know you're going through alot...
I hope you see better days ahead
Good Luck!
Posted by dali (Member # 24458) on :
Had it for over 20 years; at 17 years tested "equivocal" and underwent treatment; tested again, had fewer bands 5 years later during a relapse, after 2 months antibiotics had all sorts of bands show up..CDC positive...so it seems the immune system kicked in after the relapse and antibiotic treatment. The bands change all the time depending on the state of the infection and the health of the immune system.
Posted by beautifulblue (Member # 27220) on :
Thank you! for your message. I appreciate it. As I learn more, it feels like I'm one step closer - to figuring out what to do next and to healing.
I appreciate hearing everyone's experiences and knowledge on this.
It's upsetting knowing that the government is responsible for this and making it so hard for people to get diagnosed and treated properly.
Anyone who's living a life with lyme, definetly has a strong spirit, especially to be living with it for so long.
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