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09/03/2010 05:18 AM

Does a positive band 31 indicate chronic lyme?

lband31
lband31  
Posts: 140
Member

July 7,2010- I notice a mosquito bite with a big plain red rash from itching it. I think nothing of it.

July 11, 2010. Hospitalized with severe head pain, can't move my neck, sensitivity to light & sound, fatigue. CT, MRI, Spinal tap done, with labs galore. Nothing found. Told it is all in my head.

July 28, 2010 -I start declining, unable to move, or stand for more than a couple minutes I make it into an LLMD. I get a clinical diagnoisis for lyme, as all tests were initally negative. Put on 400mg/day of Doxy. August 12, 2010- IGENEX IGM positive on band 31, 41 came back at IND. CD57 is borderlineish at 75. Vitamin D is very low 14.

My llmd is sure I have lyme and I agree. However, is this chronic lyme already? I am so sure this started the first week of July from a mosquito bite. I do not recal any other bite or rash. Any info would be great. I feel very alone in all of this. Thank you!

Post edited by: lband31, at: 09/03/2010 05:27 AM

Post edited by: lband31, at: 09/03/2010 05:37 AM

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09/03/2010 06:57 AM
Tennesseemom7
Tennesseemom7  
Posts: 1050
Member

You are not alone, you have us...

Lyme is so confusing and in the infantile stages of research...even after decades of discovery..

They say that it takes 1 year for band 31 to show up positive, so who knows There are alot of maybe involved with this disease.

I have 2/3 of my childern that are positive for Lyme, but I was sure that I got "bit" last July..Even though I never noticed any type of bite, just got really sick really fast.

But now I am starting to wonder if I am the carrier, or even my Mom. It would explain a lot of things in my family. She is finally getting tested on the 14th, so we'll see.

My sister tested pos and my neice this summer...hhhmmmm

The reason I'm telling you my story is because sometimes we'll never be able to figure this disease out.

I believe it can go neuro within 12 hours after infection...

Welcome to the group and to the Lyme ride, we are all here to ride with you.

(((((((hugs))))))


09/03/2010 07:06 AM
TaraT
TaraT  
Posts: 4164
VIP Member

I feel the same way Tennesseemom7 does about all of this. I have a mother who has similar but not as bad symptoms as myself and her mother before her..

All of these diseases they say run in families....I think hog wash...It's not just genes...but pathogens in those genes...You'd think they would have thought of that...


09/03/2010 07:57 AM
lband31
lband31  
Posts: 140
Member

One year for the 31 to show up? I was afraid of that. I am a little bit in denial of all this happening to me. I was so hoping that it was a new infection, and it would be cured. The more I read the more I realize there is no cure. This is a hard new reality for me to deal with. I was hoping to have a baby in the next year and I think that will have to wait.

09/03/2010 01:58 PM
Bettyg
 
Posts: 32274
VIP Member
I'm an Advocate

welcome;

yes, please wait on the baby; they can be born WITH CONGENITAL LYME! only 32 llmds KIDS docs in usa!!

here's info galore in my welcome letter to you; print off dr. c's explaination of western blot; read over & over; eventually it sinks in; you'll you this alot to refer back to ok. Smile hugs/kisses

bettyg, iowa group leader

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

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

Seeking a lyme literate md; start YOUR OWN POST on this new forum; do NOT just add it to the introduction post only.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/1181374-lyme-literate-md-requests#1181957

(applies ONLY to those who posted elsewhere already ok.  )

NEW FORUM, SEEKING LLMDS, the 1st forum

start a NEW DISCUSSION by clicking on that at bottom of the page, copy your text to the body of message as you posted above read my detailed instructions in christine's 1st post explaining how to use this new forum; big thanks! Hugs; example below

subject: 4 yr. old needs KIDS LLMD IN MD, VA, DC area

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info

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

2008 Dr. Burrascano's Lyme Treatment GUIDELINES

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1152935-08-dr-burrascanos-lyme- guidelines-supplements

Pages 17-19 discuss Adult and Kids Treatments

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1173561-08-kids-lyme-guidelines-of- dr-burrascano

Dr. B's Supplement List

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

Making the most of your LLMD visit

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

Herxheimer “herx” side effects to antibiotics & supplements …. Symptoms, treatments, and more! 1.25.10

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1186591-jarischherxheimer-reaction- symptomstreatment

Herxing Reactions:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89322

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

CHECK OUT THE “LYME FACTS” forum; lots of good, accurate info there for your lyme journey.

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research

print off BUT YOU LOOK GOOD article on page 2 of this post where I broke it up for others to read easier; we neuro patients!

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/1275535-feeling-guilty-for-being- sick/limitstart/10#1279159

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

WHAT IS LYME DISEASE? as quoted by Dr. Burrascano

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1123178-a-must-read-for-new- members#1124851

Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

LYME YAHOO GROUP BOARD FOR EACH STATE FOUND HERE! People seeking doctors might be able to get help from their state online information and support group. 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

example: 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

http://www.lymenet.org/SupportGroups/

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 co-infections. 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

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or Wed am. Check current $; 3 wks. for results!

Call 1-800.832.3200.

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 IF you haven't called for Igenex to send you THEIR test kids!

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

Dr C's Western Blot explanation is discussed here:

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/1092391-missouri-drcs-western-blot-explanations- of-nos#1093495

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/3683-igenex-calif-western-blot-igmigg-testing-

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

Call ILADS they are happy to refer to LLMd's around the country. Here is the contact link, scroll down beyond the email form for their phone number:

http://www.ilads.org/contact/contact_ilads.html

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

American Museum of Natural History 2 SLIDE SHOWS

http://www.amnh.org/sciencebulletins/index.php? sid=h.s.lyme_brain.20100125

when you get to the site go to upper right hand corner and type in LYME DISEASE hit enter and it brings you to this very well-done slide show on LYME disease! it shows ”brain lesions” too. 1st one is DATED JAN. 25, 2010.

Betty, Minoucat, & Connie Mc's SSDI, SSI, & LTD DISABILITY RECOURCES FOR Disability, Insurance, Dealing with HMOs

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/3118-bettygs-disability-info-25- pages

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/13935

Success Stories

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/57269-post-your-success-story-here

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients …..MUST READ!! EXPLAINS EVERYTHING !!

written by Marian Rissenberg PhD & Susan Chambers MD,

The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32

http://www.anapsid.org/cnd/diffdx/rissenberg.html

NEURO-COGNITIVE LYME DISEASE links from cheryl's site 1.10 http://www.lymeinfo.net/neuropsych.html

Porphyria (including KPU)

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 87840?

cardiac symptoms please read!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325

SUICIDE HOTLINE PHONE NO. & PREVENTION TIPS

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/1275497-national-suicide- prevention-lifeline-tips

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=058059

TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic;f=1;t=065801

VESTIBULAR SYMPTOMS

http://www.vestibular.org/vestibular-disorders/symptoms.php

DIZZINESS - many details at this thread

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/Itemid=217/func=post/do=reply

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 65801?

TREEPATROL'S New Member Learning links: this can wait! There are OVER 1,000 LINKS here but treepatrol has organized it as best as he could

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

NEED A LAUGH, READ HERE & ADD YOUR OWN

http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1041725-looking-for-my-need-a-laugh-post- bettyg-started

you tubes, post your FUNNY or INSPIRATIONAL ones here http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1114416-you-tubes-post-your- funnyinspirational-ones-here

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, so we are able to comprehend and read. Then we can assist and guide you ok.

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX and hit ENTER TWICE to doublespace between each paragraph. Hugs

DO NOT BREAK UP THE SENTENCE THOUGH…we neuros lose our train of thought if it is broken up in the middle unless it goes on FOREVER!

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. Click EDIT send when done. 

Go to LOWER BOTTOM MIDDLE; SUBSCRIBE TO THIS DISCUSSION to receive all replies.

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


10/14/2010 07:01 PM
ChuckG
Posts: 76
Member

It is IgG bands 31 and 34 that generally don't appear until after a year or so. IGeneX sample size for 365+ days was 8 people.

IGeneX:

IgM antibodies to the 31 kDa protein were present in over 50% of Lyme patient sera up to one year after a tick-bite.

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