Hi, my friends daughter is 12 years old. She was diagnosed with lyme at the age of 7 1/2. The doctors gave her amoxaclyin for 3 to 4 weeks. She is now having strange systems of canker sores all over her mouth, sometimes very bad and sometimes they seem like they are going away. She is also experiencing leg tremors.
The doctors won't test her for lyme, they said she was treated in the past and that was it.
My question is, could the lyme be showing itself again, could she be reinfected, or are these not lyme symptoms at all.
She has been to our Children's Hospital several times, even overnight and so far they've concluded it's psychological.
Any help would be appreciated. Thanks.
where is your children's hospital located? i've heard very bad things about 1 of them!
YES, canker sores can be! my hubby had them horribly to the point you could NOT understand most of what he was saying and SO PAINFUL!
eventually they went away on their own, but i had him to several drs. & DENTIST! no one could figure out why.
after my official correct lyme diagnosis 6 yrs. ago; 34.5 yrs. MISDIAGNOSED by 40-50 drs; i had him tested too thru igenex, calif. for western blot igm/igg only.
my new beginner llmd did NOT know how to read these & said he wasn't positive.
however, now i'm educated & used dr. c's western blot explanation, i compared the positives/indetermined; YES'S HE'S POSITIVE but didn't meet cdc criteria to be COUNTED IN OUR STATE'S LYME STATISTICS!
also, check out my link below on CHILDREN'S SYMPTOMS FOUND IN MY SYMPTOMS LINKS FOR LYME/CO-INFECTIONS; i'll include my entire welcome letter since you started before i came to this board only; many helpful things in it.
that's why i broke up your post; i could NOT read as; so please break up your posts in future for us extremely neuro lyme folks so we can read/comprehend all posts. then we can help/assist you as necessary. 
huge thanks!
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 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, 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=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
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
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.
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.
