Lyme Disease Support Group

But no one will answer what will happen to me in the future.

I am 37 and I have all the associated illnesses that are possible.

I am worried I will not be able to walk and I want to prepare for the future.

broke up continuous text and used quotes to enlarge text for severe neuros like me to comprehend/read. bettyg, iowa leader

Post edited by: Bettyg, at: 11/16/2010 02:28 AM

Cleaning up your diet and getting a little exercise along with detoxing regularly I'm sure would add years to anyones life...

But better than that it can give you some quality in life.

Yes some people die from lyme...Some people recover and live a long life...

I have a pretty positive outlook actually..Even though I've been sick for almost my entire life.

When I do all that I can do to get well then I'm sure I will feel better than I do now...and to me that is exciting...Even if I never get 100% better...I'd have a dang good life if I could just get 50% better.

*HUGS* to you...I would try not to stress over this but just to let all of the info. sink in..and then make up your mind what's going to happen

Post edited by: Bettyg, at: 11/16/2010 02:32 AM

Maintaining muscle conditioning and knowing how to do it within your limitations goes a LONG way towards not becoming more debilitated.

My mother-in-law was always very healthy, but got very weak after a rather prolonged illness. Physical therapy helped her get back on her feet, and also taught us both what about what she needed to do to avoid falling back into that weakened condition.

I am in physical therapy. While my original reason for going was a shoulder injury, we are also addressing some generalized weaknesses that are Lyme related.

The exercises they are teaching me will help me know how to exercise my body to the best of my ability in the future no matter what level of physical condition I am at.

I also like going. I find that Physical Therapists tend to be a happy bunch of people, and being around them inspires me to work harder at being able to exercise appropriately.

Long ago I was in a car accident and was in constant pain for a very long time. During that time, I read about someone in a wheelchair following back surgery

and debating about what to do with her horse since she did not know if she would ever ride again.

The reply was to sell the horse and stop worrying about what she couldn't do and worry about what she could do.

If it was meant to be, then some day she would be able to get another horse. In the meantime she was only hurting herself by spending time worrying about the horse instead of doing other things that she could still do.

I read that thread about a hundred times and I've never forgotten it.

The anecdote has helped me cope with my limitations from both the car accident, and now Lyme, and the ever changing face of Lyme.

I hope you find some peace in it as I have.

supermom2

Post edited by: Bettyg, at: 11/16/2010 02:33 AM

you've gotten some great advise above. i've had chronic lyme 41 yrs.next month; almost 35 yrs. misdiagnosed by 40-50 drs. unacceptable. my story is in MY PROFILE on left side.

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

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

PMs deleted in 30 days! File this in ARCHIVE, upper right corner!

PLEASE DO NOT POST YOUR GIVEN FULL NAME! not safe!

http://www.mdjunction.com/index.php?option=com_joomlaboard&Itemid=217&func=view&catid=3260&id=1345278

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 last 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

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://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/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

Herxheimer “herx” side effects to antibiotics & supplements; Symptoms, treatments

http://betterhealthguy.com/joomla/blog/216-ilads-2010- conference-takeaways

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=get_topic; 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 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 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

EARS RINGING …TINNITUS! Good Links galore by Keebler 3-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=064047

TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links by Daise and Keebler, 4-27-08

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

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

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

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.

Go to left hand corner; 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