Lyme Disease Support Group

After seeing many local drs. and ending up at the Mayo Clinic, I finally found a LLMD locally, who is willing and capable of helping me. I wasted time and money at the Mayo clinic. Left there more frustrated than before.

Today, however, I say the LLMD. She was so patient and compassionate. She litterally spent five full hours with me and my husband. She explained everything to me. From natural supplements to antibiotics and much much more. She is a homeopathic/holistic doctor who is lyme literate. Thank God I found her. Actually, ILADS gave me her phone number.

Needless to say, I am so glad I am now getting the proper treatment. My body was and is just wasting away, physically, and emotionally. This is the hardest medical issue we have ever had to deal with. I have central nervous system involvement, heart problems now, and all over head to toe severe pain, arthritis. I have just about every symptom you can imagine in regards to lyme disease.

I finally feel there is hope. Now that I have found a very thourogh doctor, who is more into natural healing, but yet very knowledgeable about the proper antibiotics, who is willing to help me fight this, I just have been so happy today!!

I would love to share my experience, and make new friends on here. I would love to learn as much as I can about this disease and what has worked and hasn't worked for others.

I have three children and my husband, and our litle dog marley in the home. We are very concerned that my husband and my oldest may have Lyme as well. My daughter has already been diagnosed with fibromyalgia, and my husband has recently started to have some of the same symptoms that I have.

My husband has been my rock. He works full time, takes care of me, and our children. I sometimes am unable to walk or function on my own, so he litterally carries me, pushes me in the wheelchair, dresses, bathes, brushes my teeth, and has had to litterally feed me at times. My Lyme is always very bad, intense pain, but then I get "flare ups" where the pain is just about unbearable. Without my husband, and having the Lord in my life, I just don't know if I'd make it.

I pray for all of you who are suffering like I am. I never knew Lyme Disease was like this. I just pray that soon, very soon, there will be more research and education for these so called speacialists to learn. I have lost so much faith in the medical field. We feel like we had to be our own doctor to get to the bottom of this ordeal.

My husband and I believe that things happen for a reason. We feel that god is allowing this situation for some kind of greater good. Though it is pure hell going through this, we feel that God will not give us more than we can handle.

Our goal is that when I start getting better, we start doing anything and everything we can to help others out there who are going through this. Lyme is a terrible disease, but there is hope. We will fight this and we will win!!

Thank you all for reading and I look forward to talking with you!

~Jen

Welcome to the group. You will find a lot of good information and many wonderful people here to help you through.

Please check out the fact section on here and you will find many things that can help you in your recovery. I am so glad that you found a good doctor to help.

Make sure your husband get treatment as soon as possible also. My husband and I are both being treated for lyme.

We have found that on top of having the Lord in our lives, it has helped to laugh at some of the things we are experiencing. Remember "Laughter does good like a medicine."

Hope you are soon up and back to being yourself.

God Bless,

Kathy

Post edited by: decembergal, at: 01/20/2010 09:07 PM

your story was so touching; it brought tears to my eyes and your husband/child may have lyme or co-infections too.

give your hubby an extra hug/kiss for me will you? my hubby has been my rock for 35 yrs! we didn't know until 5.5 yrs. ago out of 40 yrs. i've had chronic lyme all this time!

would you send me a private message, found on left hand side? i'm 1 of 3 here who have nationwide llmd, lyme literate md lists.

i want to make sure we have the info on woman llmd you went to ... wow 5 hrs. that's the longest i've ever heard of!

this is the info i'd like IF you have it:

we need full name

SPECIALTY

street addy

city, state

phone no.

fax no.

web site or email if possible

cost per hour for 1st visit

and length of visit

cost for follow-ups

and length of visit

do they TREAT KIDS? WHAT AGES?

do they take insurance?

what kind?

treat by IV or ORAL?

not sure if i sent you my welcome letter or not, so i'll post it below and it has some excellent links to learn from also.

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

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

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

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or Wed am. 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

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

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

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://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

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 DISORDERS ASSOCIATION

www.vestibular.org

VESTIBULAR SYMPTOMS

http://www.vestibular.org/vestibular-disorders/symptoms.php

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.

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.

I am sorry to hear that you and your family have had this disease intrude on your lives. It is entirely unfair.

That said, I am always proud to know another valiant Lyme warrior! Check into the activism section when you are feeling up to it...

Welcome aboard!

Jen - does your doc treat children too...Fibro is a HUGE SYMPTOM of Lyme - and if that is her dx - and you have it and the hubby is showing signs - then the likelihood is that she has it too....

So glad to know that you have this doc tho...if she doesnt treat kids - let us know (bettyg, myself or jaime1978) and we can help you find an LLMD for the kids...

Christine

I am so sorry you have went through all of this, sadly it is very common.

Looking foward to getting to know you and I'm very happy you have a wonderful Doc now.

Brenda

God BLess,

~Jen