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07/16/2010 11:23 AM

Wondering if I have Lyme Disease?

ejames89
ejames89  
Posts: 35
New Member

Hi, new here, and I'm wondering if I could have Lyme disease.

My Fam Prac has performed and ELISA test, which was negative at .38 (Normal is <.90). However, I've read that some of the Lyme tests can give false negatives.

Are there any other tests, and which one should I ask for? The Western Blot test?

I have an appt with a LLMD in about 2 weeks, but I'm wondering if I can get more testing done through my Fam Prac first. I've been suffering with Fatigue for several years now (especially the last 7 months), and I'm simply trying to get to the bottom of these health issues ASAP. I'm tired of feeling bad!

Anyway, my symptoms are as follows....

Fatigue

Tendinitis and Muscle aches (widespread)

IBS (bloating, nausea, constipation, diarrhea)

Restless leg syndrome

High Blood Pressure

Headaches

Short of breath

I have had extensive tests through a Gastro, Endo, and Neuro. The only thing that has come back abnormal is a low Vitamin D. Gall Bladder was removed too, but no relief.

Also, my Gastro prescribed Prednisone in April, and I developed TMJ pain during the one month duration. This seemed very odd to me. However, I've read that it might not be so odd for someone infected with LD, since the Prednisone is an immunosuppressant.

I have recently started testing my blood sugar at home and the fasting level has been between 108-122 every time (7 tests over two weeks).

The blood sugar wasn't high before the prednisone, so I'm wondering if the infection flared up even more while on the prednisone. I've read that infection can cause blood sugar levels to rise.

Could these symptoms be caused by LD? If so, how do I get the Dr. to do more testing, or am I just going to have to wait for the LLMD appt?

Thx!

Reply

07/16/2010 11:32 AM
TaraT
TaraT  
Posts: 4164
VIP Member

Your best bet is to WAIT for the LLMD to do the testing. He will probably be using Igenex labs as they are the leading lyme and co infection lab.

You most likely DO have lyme and co infections by looking at your symptoms....and YES the regular tests performed at regular PCP's are notorious for false negatives..

You can use a product called "Maca"...I have seen it lift some of my fatigue almost right away after starting it. It's a natural adrenal and endocrine support so it will be very helpful with the blood sugar thing too possibly.

Detoxing with a lot of water intake and cleaning up your diet to stop the myriad of toxic foods out of your system will help you immensely as well.

Keep us posted and WELCOME TO THE GROUP!


07/16/2010 11:37 AM
ejames89
ejames89  
Posts: 35
New Member

Thx so much for the reply TaraT! I'll definitely check out the Maca and the detox regimen. I'm open to anything at this point!

07/16/2010 11:44 AM
TaraT
TaraT  
Posts: 4164
VIP Member

It's good that you are "open" LOL There are a LOT of things you can try and depending on your system and your co infections there are things that may or may not work for you that may or may not have worked for someone else...

Almost never find something that works for everyone.


07/16/2010 11:44 AM
ten1988
ten1988  
Posts: 745
Member

I agree with Tara. Those symptoms are lyme-related. Wait until your apt with the LLMD, he will most likely do the Western blot IGG & IGM anti-body test.

LLMD's send them to the most accurate tick-borne testing labs, and they also know how to read the tests better than regular docs.

I have 4 of your symptoms and have a positive blood test. Headaches, muscle aches, ibs, shortness of breath. Welcome to MD Junction by the way, read around on here theres a lot of information!


07/16/2010 12:04 PM
ejames89
ejames89  
Posts: 35
New Member

Thx so much ten! I appreciate the sound advice! Hopefully, the LLMD can get to the bottom of this!

07/16/2010 12:58 PM
Bettyg
 
Posts: 32241
VIP Member
I'm an Advocate

welcome james Smile

so glad you've been reading already as KNOWLEDGE IS POWER; we need all we can to deal with this debilitating disease/s.

please send me a private message, under my name, giving me the full name, city/state of the llmd you plan to see.

i have a NATIONWIDE llmd list; i help folks when they post here plus 3 others as well: christine/cmany, jaime, me, VALERIA/zoe.... i think that's it on this board.

definitely sounds like lyme and possibly other diseases; check out the SYMPTOMS LIST LINKS BELOW; print off dr. burrascano's SUPPLEMENTS list and his guidelines as well .. below also.

***********************************

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. &#61514; )

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

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 lymies!

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. &#61514;

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.


07/16/2010 01:36 PM
ejames89
ejames89  
Posts: 35
New Member

Thank you so much Betty!
Reply

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