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09/14/2010 09:04 AM

My Son

PrincipleHound
Posts: 1
New Member

I just wanted to contribute another story for those of us who are still trying to grasp something tangible in the process of regaining health.

Its not a good story yet.

My son is 13. He was probably bitten in the summer of 09 in Sweden, but we live outdoors in California in the summer so who knows.

His symptoms came on with what seemed to be a bad flu that did not go away in Late Jan. 2010. within 5 weeks we had him diagnosed by a ILAD leading Dr. G.

His response to orals was slow and although his headache, joint discomfort and spinal discomfort deminished by late May, he was starting to get tengling in his hands.

He did 5 weeks of IV Ceftriaxome (sp)and Amoxocylin until he started passing gallstones.

The IV dropped all his symptoms including the slight fever within a week or two so we hoped we had the job done.

Unfortunately within a couple weeks of just orals after the IV his symptoms came back.

He seems now like what he was last spring and is going back on the PICC for a retreatment that we expect to last 3 months.

For those of you who pray for people, we gladly except as He is the one we are primarily looking to.

We are only now looking into treating lyme with neutrition and whatever else we can get oursleves to believe in.

If things go well, I will try to remember to come back and finish the story.

If you have something that you are confidant has made a difference, let us know.

Thanks.

edited; DELETED DRS. LAST NAME, no last names or cities are allowed on the board; you can send last names in PRIVAtE MESSAGES only, located beneath our names. Smile

broke it up into short 1-2 sentences MAX paragraphs so neuro lyme folks can read/comprehend. then we can help you; big thanks for doing this for all future posts/replies.

would you do the same for your profile? would love to be able to read your story there. thank you hugs/kisses

Post edited by: Bettyg, at: 09/14/2010 12:14 PM

Reply

09/14/2010 12:19 PM
Bettyg
 
Posts: 32220
VIP Member
I'm an Advocate

welcome dad Smile

if you will click on LLMD REQUEST FORUM, top forum on lyme home page, then read cmany/christine and my/bettyg instructions, you'll find california broke up into 6-9 areas.

please start a post there using the SPECIFC AREA from my post showing how it's worded, example

san francisco KIDS NUTRITIONIST NEEDED

copy/paste MY broken up version above to this new post so others from california may see this as well to help you.

i'll send you who is on my llmd/naturalist nationwide list ok Smile

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

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 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

2008 Dr. Burrascano's Lyme Treatment GUIDELINES

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1152935-08-dr-burrascanos-lyme- guidelines-supplements

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 patients!

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. 

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.


09/14/2010 08:35 PM
VicMac
VicMac  
Posts: 1659
Senior Member

I will certainly pray for him. It has to be rough on someone so young to have this disease! God bless him!

People on this forum try lots of things ( drugs and alternative ) that seem to help them to various degrees, at least partly or temporarily.

Check out the section on Medications and Treatments, and the General support section.

I have to switch things around sometimes.

I only know that if I did not take all the alternative meds that I do, I would be completely gone. they keep my head above water.

Your son may respond well to the herbal approach and to some of the therapies out there.

Mainly, at the advice of an LLMD I know who also has Lyme, it is important to take things that are an antimicrobial, an immune booster, and vitamin and mineral support to the body.

You can PM me if you like, and I can give you more info.

Blessings, and I will keep you both in my prayers! Smile

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