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01/06/2010 07:21 PM

How long to get Western Blot results?

fsuem
Posts: 6
New Member

After years of weird symptoms that come and go (without ever really treating them) I was recently tested for Lyme Disease.

Now that I have in my mind that this is a possibility I have been doing some (quite a lot actually!) of research and from reading the symptoms, I guess it is possible I could have it. I certainly don't have all the symptoms, but I'm starting to question even the ones I did think I have.

I was diagnosed with Narcolepsy about 2 years ago, so maybe everything I'm experiencing can be attributed to that but there's just this nagging feeling that I have something more going on... more specifically that something (possibly LD) is causing the Narcolepsy. Does anyone have any input on this?

Finally, how long does it take on average to get the Western Blot results. Tomorrow will be 2 weeks since my blood was drawn and I'm getting impatient. Having Lyme would answer a lot of questions for me.

Thanks for your input guys!

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01/06/2010 10:11 PM
decembergal
decembergal  
Posts: 181
Member

Hello,

I would imagine that the chronic fatique we get with lyme could resemble narcolepsi. I sure fell asleep at odd times.

As for the test results, when my sister had hers sent away I

think it took 4-6 weeks.


01/07/2010 01:55 AM
Bettyg
 
Posts: 32210
VIP Member
I'm an Advocate

it was running between 2-3 wks; call igenex and ask about the status of the results being done.

they can NOT give you results; go to dr/blood lab directly!

narcolepsy; never heard of anything on that/lyme before.


01/07/2010 02:24 PM
fsuem
Posts: 6
New Member

4-6 weeks?! I really hope it's not that long! I'm going crazy already and it's only been 2 weeks!

01/07/2010 02:47 PM
Bettyg
 
Posts: 32210
VIP Member
I'm an Advocate

so you didn't call igenex as i suggested? why not; sure would save on stress/anxiety.

01/07/2010 05:37 PM
fsuem
Posts: 6
New Member

I had blood drawn 2 weeks ago and it was being tested by Quest. However, my doctor (who is NOT an LLMD but IS willing to find out what's wrong with me!) already gave me paperwork for IgeneX and will have me tested by them should the Quest results come back negative (I realize they probably will.)

I think my dr. was trying to save me the out-of-pocket expense of IgeneX. Obviously if I'd known ANYTHING about Lyme before my doctor suggested testing me, I'd have researched and gone immediately with IgeneX. However, what's done is done and now I await the results.

I do trust my doctor 100% (he calls me his "mystery diagnosis patient." He even told me if these tests come back negative, he may want to take out my tonsils to biopsy them?! He really is dedicated to finding out what is wrong with me and he's just my ENT! I don't know how much he knows about Lyme (before ordering my blood tests, he put in a call to a good friend, who treats Lyme to find out the best way of getting a diagnosis ~ she gave him the information on IgeneX) but I do know, if the test is positive, he'll do all the research he can to try and make me better. I think if he'd known more, he probably would have just started treating me with antibiotics, rather than waiting on blood test results. His only downfall is that he's 1000+ miles away!

Betty, if I do need to get blood sent to IgeneX, how do I go about it ~ specifically, who do I get to take my sample? Thanks for all your help/advice!


01/08/2010 01:53 AM
Bettyg
 
Posts: 32210
VIP Member
I'm an Advocate

sue,

the info on igenex testing and WHO CAN SIGN REQUEST FORM is below in my welcome letter to you all; read it over again ok. CALL IGENEX to send you blood kit.

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

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

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

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or Wed am. 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

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

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

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://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

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

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 DISORDERS ASSOCIATION

www.vestibular.org

VESTIBULAR SYMPTOMS

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

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.


01/08/2010 08:58 AM
mstammyt
mstammyt  
Posts: 15
Member

Hi Sue,

I just used IgeneX. I called IgeneX and asked for their kits and the arrived quickly.

I took them to my Dr. and his lab did the blood work for the Basic Western Blot.. There are many test to choose from and I wasnt sure what one to ask for??

Any way our blood was collected on a Thursday the 3rd and the results were in on the 22nd.

I have Chronic Fatigue that I beleive is related to my Lyme and I can see how it could be diagnoised as narcalepsi. I take medication to help me stay awake and can still fall sleep any time.. Cant even drive because of it..

I hope this info helps you in some way..

Blessings,

Tammy <><

Central Iowa


01/08/2010 09:26 AM
fsuem
Posts: 6
New Member

Thank you so much Betty and Tammy. I really appreciate it. I should actually add that my name is Emma... I go by Em and I went to Florida State ~ Technically I guess I should have made my username FSU~Em Smile
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