welcome jennie
check your private messages for FLORIDA llmds. hugs
so sorry to read about your husband. MAYO CLINIC is NOT GOOD FOR LYME; sorry you learned the hard way.
this might explain some on neuro issues:
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://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/
71550?#000000
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 “test kit” with their required form, all the test vials, & box to ship it in. 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’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.
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.
Anyway, it totally incapacitated me before I found a doc that stated it couldn't be anything else...not coincidental that I had all symptoms appear after discovered tick.