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12/02/2009 08:20 PM

Hi! New here.

FluffySingularity
FluffySingularity  
Posts: 2
New Member

Hey everybody!

I just got diagnosed with late Lyme early this month. I am just so, so happy to finally have an answer. Maybe now I can finally get better. I'm not really feeling up to launching into a really detailed story right now, but in short, most of my symptoms are musculoskeletal, which led to me seeing a sports medicine/injury specialist for years under the assumption I had a bunch of odd tendonitis/tendonosis and muscle strains. It has been devastating because my passion is dance, particularly ballet, and I can hardly do it anymore. My range of motion had just withered away. I also have a lot of brain fog and have had a lot of depression and anxiety in the past years, though I haven't much these days. I always thought the brain fog was just me "getting stupider with age." I am so, so delighted to know that that is not the case.

I'm really excited to see such a large, active group of people coming together to support one another =) A support group will be really nice, I think, and hopefully I will both help and be helped here =)

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12/02/2009 09:04 PM
decembergal
decembergal  
Posts: 181
Member

welcome to the group.

I hope you are able to get the right treatment now. You might want to check out the fact section. There is a lot of information there and it really helps when you see the doctor to be knowledgeable.

Keep us updated as to how things are going.

God Bless,

Kathy


12/03/2009 10:02 PM
TaraT
TaraT  
Posts: 4164
VIP Member

WELCOME TO THE GROUP! I am so happy you found us.. THIS WILL make a very big difference in your life. We are here for you as you walk this road....

*HUGS*


12/04/2009 12:33 AM
Bettyg
 
Posts: 32240
VIP Member
I'm an Advocate

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 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. 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.


12/04/2009 08:20 AM
dharma79
dharma79  
Posts: 1180
VIP Member

Again, Welcome!

You have found a place where your weird symptoms are actually totally understood! You don't have to be alone during this journey...and it will be one.

Good news is that people get well all the time! You just have to be vigilant and consistent.

Are you seeing a Lyme Literate MD? We, as a community, have mostly found undertreatment, disbelief and belittling in the hands of more mainstream docs. We'd be happy to help you find a MD who is well versed in all things Lyme and treat on the frontlines daily.

Often Infectious Disease docs, neurologists, PCPs, etc will only treat you partially and if you are late stage or chronic, they won't see the treatment through fully until all symptoms are gone + 2-3 more months of treatment to be safe.

There is a ton of info here...start with the basics and then move your way through the other forums as there are a few within this group.

And, of course, post away! Our group members are great for support and experiences and we have members here that tirelessly research and bring what they find here to share. I really can't say enough about how much this site has really helped me and my family...because Lyme effects all of us...infected or not.

Best wishes and please feel free to PM(private message) for anything! Smile


12/04/2009 10:20 AM
jaime1978
jaime1978  
Posts: 2399
VIP Member
I'm an Advocate

if you need anything at all, don't hesitate to PM me, I'm usually in my inbox getting doc lists for people... but please post away on the boards Smile

12/04/2009 10:56 AM
cmany
cmany  
Posts: 6931
Group Leader
I'm an Advocate

Welcome aboard!!

PM for anything

Christine

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