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Can someone help us decipher our daughter's test results from IGeneX....
In February 2008 our now 14 year old daughter got ``the flu'' with symptoms of high fever, headaches, muscle aches, sore throat, fatigue, etc. and lost 5 lbs in 10 days. She has been loosing weight since then and is down to 85 labs.
She developed GI symptoms (pain, bloating, cronic constipation); she had a three day span that she again had fatigue and headaches and lost 4 lbs. in three days. She was hospitalized for a week. After many, many tests, they could not find anything except a small lymphangioma on her intestines that was removed. They said that it was not the problem and was probably secondary (but to what they could not say).
She tested negative to Celiac but would experience pain whenever she ate gluten. As she was a dancer and 14, they evaluated her for a eating disorder. She was cleared of all eating disorders by doctors and psyciatrists. (This kid loves food!) She had two regular Lyme tests and they were negative. She started having pain in one of her knees, her feet and one of her toes goes into spasms frequently.
We started seeing a GI specialist who felt that all of her symptoms were post-infectious to "the flu" she had in Feb of 08 and gave more a wait- and-see attitude.
After completing a Lyme checklist we found online, we asked her doctor to send her for bloodwork for the IGeneX test (which the doctor thought was a waste of time). She did request it however and we now have the results back. Her doctor did agree to treat our daughter for one round (30 days) with Doxy but that she did not feel in any way our daughter has Lyme but that she could have been exposed to it somewhere along the way.
Our yard (in Massachusetts) is completely surrounded by woods and we have a major tick problem. We do have an appt at Boston Childrens in a few weeks to review these results and examine our daughter as well. She has gone from a muscular, strong, vibrant dancer to a very thin, frustrated young lady. She has lost a total of 25 lbs through this ordeal. Her doctor does not feel it is safe for her to dance any longer. Despite all our efforts we cannot seem to control whatever this is. Anyway, here are her results. Please help!
IFA, B Burgdorferi G/M/A 1:80 titer
HME Panel (monocytic) E. Chaffeensis IgG 1:320 titer (ehrlichiosis)
HGE Panel (granulocytic) A. phagocytophilum IgG 1:160 titer (ehrlichiosis)
Western Blot IgM 31 IND 39 IND 41 +++
Western Blot IgG 34 IND 39 IND 41 +++ 58 + 83-93 IND
Dekrator48
Frequent Contributor (5K+ posts)
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Please see the responses on the Medical Questions board....
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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