Lyme Disease Support Group

My daughter just had blood work done at Igenex and the results are as follows:

Lyme Multiplex PCR: Neg (whole blood and serum)

IFA: Neg

Lyme IgG Western Blot: band 39 = IND

band 41 = +++

band 45 = ++

Lyme IgM Western Blot: band 39 = IND

band 41 = ++

According to the ILADS notes Marissa has IND for the specific band 39 and +++/++ (IgG/IgM respectively) for the spirochetes in general band 41. If this is all that has shown up is her pediatrician right in saying she is Neg for Lyme? He wants to attribute her clinical signs of headaches, joint pain, anxiety, poor attention, petechial hemmorrhages and dysautonomia to EBV. At least he said EBV is "likely" the cause but he said that we'll just have to accept that we may never know. I'd love some input.

Manette

But I'm not an LLMD, so I can't say for sure. Your best bet is to at least schedule the appointment, have her seen, and then go from there. Most LLMD's will treat until symptoms disappear, plus 2 months later. Then some patients still need additional supportive treatments every now and again--pulse treatments and herbal supplements just as a precaution to prevent the return of full-blown symptoms, but this is usually in cases that have gone long-term.

I felt compelled to state all of this and urge you to seek further opinions from an expert based on my own 15-30 year battle with Lyme. I'd hate to see your daughter experience what I have and to have to deal with seeking doctor upon doctor upon doctor, and feeling crazy because she can't find a reason for all these "crazy" symptoms. So please heed my words. If you find that an LLMD says no, then at least you have a more expert answer than someone who really doesn't get it.

Hugs,

jen

LLMD's consider an IND as a positive. LLMD's would say positive and treat. 45 is cross reactive for all Bb.

please pm me for KIDS llmd, and how old is your child?

what is the largest city/state you live in?

if you are in california, see the post where 3 of us have llmd lists, and i ask that you break it down by regions & list them.

state of wash....east or west side; they have 30 there!

i'm going to post my welcome letter to you, and please read dr. c's explanation of western blot igm and igg good where each number POSITIVE/INDETERMINED what they mean.

Welcome to MD JUNCTION!! I'm so glad you found us! You’ve come to the right place for education and support!

The following is some links that may be helpful to you:

Lyme Disease and Co-Infection Symptoms

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/318635-lyme-and-co-infections- symptoms

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" http://www.ilads.org/lyme_disease/treatment_guidelines.html

Pages 17-19 discuss Adult and Kids Treatments

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 80440?#000006

Dr. B's Supplement List

http://www.lymepa.org/Nutritional_Supplements.pdf

“Making the most of your LLMD visit”

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic&f=1&t=020605#000005

Suggestions for When You Need Treatment and Funds Are Low plus Financial Burdens post towards bottom; extremely detailed by Melanie Reber

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/22281

New Member Learning links:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917

Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD. http://turnthecorner.org/lyme-disease-quick-facts.htm

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.

To find your state group, go to

http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, like this -

http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename

and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):

www.clinicaladvisor.com/Controversy-continues-to-fuel-the- Lyme-War/article/117160/

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. www.igenex.com http://www.frylabs.com/; http://www.clongen.com/; http://focusdx.com

Dr C’s Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=042077

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/Itemid=217/func=post

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. www.ilads.org

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

Herxing Reactions: http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=041517

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or W. Check current $$! Oct. 2008 Price List … info only. Prices have increased on some! Call 1-800.832.3200 for current prices.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 78648?#000003

They will also send you a free “test kit” with their required form, all the test vials, & box to ship it in with return postage! Be sure 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.

Optional tests include: co-infection panel for your area of country and PCR whole blood

Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.

Get copies of all of your special bloodwork.

Overseas instructions for sending to Igenex/Fry Labs (2-23-08)

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=063751

Betty, Minoucat, & Connie Mc’s SSDI, SSI, & LTD DISABILITY INFO GALORE

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/Itemid=217/func=post

Betty’s suggested posting guidelines:

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 40 yrs. neuro chronic lyme.

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short....5-6 lines MAX and double space between each one ok. hugs

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit “enter” key twice after each paragraph, also.

Go to left hand corner and mark box to receive ‘all replies’, and click edit send.

Thank you for posting in a manner that makes it easier for all to read and help others.

I can explain it more for you. Just let me know.