posted
I just received the Igenex results for my 9 year old daughter.
Negative!
She has a clinical diagnosis from 2 different LLMD's (the only 2 in Canada!)
She has been on Amoxicillin since April/06 and reacted very strongly when she started.
Her symptoms look like a page in the Lyme book but mostly knee/ankle joint pain, stomach aches, sore throat, dizziness (resolved), blurry vision (resolved) poor memory and concentration (improved), poor circulation, mood swings (getting better).
IgM 23-25 Neg 30 + 31 IND 34 Neg 39 IND 66 + 83-93 Neg
If anyone has any words of wisdom for me, I'm all ears.
Thank you!
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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SForsgren
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Member # 7686
posted
30, 31, etc. that showed up are Lyme specific. I would not take this as negative even though it may be per CDC criteria. I would do coinfection and CD57 testing to get more information.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I'd take that as a clinically positive diagnosis despite the "negative" serology. Those IND bands are Bb specific. She should be treated and watched for improvement of her symptoms. Do you have a LLMD?
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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SForsgren
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posted
Agree with Penn92. Get an LLMD and start working out a treatment plan.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Gee, with her strong reaction to amox and improvement, it sure sounds like you are on the right track.
I agree,a LLMD for sure and maybe a CD57 as mentioned.
My nine year old has a similar Igenex result as yours, a low CD57 and will start treatment with amox and zith next week.
I would not get discourage about the test results--there are some really strong indicators of Lyme there. Best wishes!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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quote:Originally posted by Penn92: I'd take that as a clinically positive diagnosis despite the "negative" serology. Those IND bands are Bb specific. She should be treated and watched for improvement of her symptoms. Do you have a LLMD?
posted
My daughter's results were also very similar to your daughter's. Dr Jones told us early on that the sickest children often have the least "positive" test results. He is treating my daughter on a 30+ band IGM, which he feels is reason enough.
She is getting better after 1 year on abx. Almost 90% I would say.
Find a good llmd and she will get better. You are doing the right thing.
Posts: 263 | From Georgia | Registered: Feb 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I was treated initially with just a IgG band 35 and a multitude of clinical symptoms. (I don't think they even count 35 anymore.)
Anyway, I gained more bands as treatment went on. I was too sick to make antibodies. It took me 2-3 years to get a weakly CDC positive test. That's how long it took for my body to figure out how to make antibodies. (I had been sick for 10-12 years when diagnosed.)
It sounds like you're on the right track and her tests are showing Lyme specific bands and she is improving.
I was also negative for Babesia and 5 years after the lyme diagnosis tested weakly positive for Babesia macroti.
I'd also like to echo what everyone else said.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Thank you everyone for your well informed help!
My panic button went off and everyone really helped me to get my thoughts together.
Canada has 2 LLMD's. But when you think of it, this is probably 2 too many considering Canada doesn't have Lyme disease.
Well, I think our last count is less than 200 people but this doesn't really count since most of these people became infected while travelling out of country. Grrr.
My daughter got a clinical diagnosis from one of the LLMD's, Dr.M, in April 2006 and she has been seeing the second LLMD, Dr. B, since August.
I haven't been able to talk to Dr. B about the results but he did write NEGATIVE on the tests before they were faxed to me.
My daughter has been on amoxicillin since April 2006 and she had a terrible reaction on day 5 and was incredibly sick for almost 2 months.
She improved greatly over the summer and in August she started going downhill again so her abx were upped.
She started out on a low dose - 1500mg/day. In August she went to 3000mg and in December she went to 4000mg.
I wonder what 10 months of abx could do to the test results.
Abx are working. Why are they working? The best answer I can come up with so far is that she has Lyme.
Please give yourselves a big pat on the back for helping me to think this through.
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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