Lyme Disease Support Group

there is no way I am missing this trip, and I just did two years of school and now if I have a picc line, I will be out of work for however long....my husband will be thrilled....my dog has lymes and is getting treated, and I have found numerous ticks on me, lots and lots of signs that I have it...but the last doc wouldnt listen....

thanks for letting me join,

JP

~~~Lyme has been treated successfully,as in remission,

in many differennt ways.Oral abx,IV abx,and with any number

of other additional pharmeceuticals.

~~~Lyme dis-ease has also been successfully treated without

Pharmeceuticals such as Herbs etc.

~~~There is a general consensus that co-infections should be treated

before or,at least along with,the Lyme spirochetes.

~~~So it is important to rule in or out any co-infections.

~~~In any case it is extremely critical to treat Lyme disease and company

for three months after being symptom free.

~~~This is one of the main issues with Lyme Dis-ease...

~~~If you do not see a Lyme Literate Dr(LLDr),

and your tests APPEAR negative,they may treat you for

whatever symptoms that your symptomology SEEMS to fit.

~~~And in most cases since you are not being treated for

the actual culprit,Lyme Disease,the phantom treatment will do

almost nothing or nothing at all or even cause more problems,

and even damage,such as being treated for MS,which Lyme mocks,

with steroids etc that will only intensify the Lyme invasion

and wreak additional havoc inside of you and on your life.

~~~Some have even been prescribed surgery,by a non-LLDr

for a Lyme mocking "phantom" problem and the surgery,of course,failed.

~~~Lyme dis-ease can mock 300 dis-eases!

~~~However it remains important to carefully rule out other

possible problems.

~~~But,let a LLDr do this to save you many middle steps.

~~~There is also a general consensus to get a superior diet in order.

~~~That is,no junk.Every one with any sense whatsoever knows what that is.This means no sugary sodas or even diet ones or any carbonated dead beverages.Pure junk! No processed sugar either.No empty calories!

~~~Only nutriciously dense foods in a wide variety of the rainbow such as fresh sprouts,purple and green cabbage and mixed greens salads,mixed berries,etc.

~~~Mostly if not all vegetarian.Mostly if not all raw-fresh unheated fruits and vegetables are raw.Little to no dairy.Cut out gluten if you happen to be gluten intolerant as many Lyme Patients are.

~~~Eat whole grains and brown and wild rice blends,quinoa,amaranth,buckwheat,etc.Raw nuts and seeds(so as not to destroy living enzymes and essential fatty acids) such as walnuts,almonds,pumpkin and sunflower seeds.Beans.

~~~Cooled down to warm(so as not to destroy living enzymes in raw honey) Green tea,red(rooibos)tea.Almond milk.Raw honey.

~~~Plenty of water,some with fresh lemon.

~~~Go to a healthfood store and get a sprout kit and make your own mixed sprouts at home in your kitchen.Try 2 Tablspoons brocolli,2T funugreek 10T(5oz) mung sprouting seeds in a half gallon sprouting jar.In three to five days,depending on the temperature,Winter or Summer,and poof,nutriciously dense food.They'll keep for a week in the fridge.Don't rinse on last day to keep on dry side to keep longer in fridge.Start a new batch some days before they run out to keep a constant supply for sandwiches ,salads,etc.Add it to a big mixed greens salad.

~~~Omega 3 fatty acids and fiber rich seeds such as chia(whole or ground) and freshly ground flax-freshly ground flax as the omegas become unstable after some time after being ground, and flax is undigestable whole.Unheated so as not to destry vital omega fatty acids and living enzymes.

~~~Organic every thing as much as possible.

~~~No bad habbits such as smoking etc,or alcohol which in many cases is

very bad for Lyme patients.You know the drill!

```````~~~in my straight jacket~~~out on a limb~~~lookin like a cocoon

~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Mitchell~~~

Welcome to MD JUNCTION!! I'm so glad you found us! You’ve come to the right place for education and support! File this in ARCHIVE, upper right hand corner! PMs deleted in 30 days!

PLEASE DO NOT POST YOUR GIVEN NAME! File this in ARCHIVE; PMS kept for 30 days only!

http://www.mdjunction.com/index.php?option=com_joomlaboard&Itemid=217&func=view&catid=3260&id=1345278

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

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.

jp, please EDIT your 1st post into shorter paragraphs of 1-2 sentences MAX for us severely neuro lyme folks who can't read or comprehend as is.

we thank you for helping us help YOU BETTYG, iowa leader

I did IV antibiotics for over 5 months, and the only reason I stopped is because I got a blood clot in my line. They are really hard on your system, and the risks are great. I know you have had a PICC before, but you would have it in for much longer this time.

My LLMD reserves IV abx for people who have been sick for years, or people like me, who have been sick since birth. I highly recommend trying orals first. At the very least, you can have a good bit of die off, therefore reducing your herxing if you start IV in the future.

It is wise to start some supplements now, and begin thinking of starting detox. Detox is necessary during treatment, and things like using a sauna can produce die off. I bought an at home infrared sauna for $900 and consider it a great investment. Like waxby said, there are MANY herbs that also act as bactericidal agents.

I am a pre med major, and will be getting a double major in alternative medicine. My husband also suffers from lyme disease and has been taking the core protocol of the Buhner herbs. He also takes teasel root tincture as suggested by Wolf Storl. He has made SIGNIFICANT improvement and it has really cemented my faith in these herbs.

In most cases, people don't start treatment until several months after their test. This is because it is wise to get pain somewhat under control, make sure sleep patterns are healthy, etc so the body will be in prime shape to begin healing. Besides, if you start treatment before your trip, you risk herxing and not being able to enjoy it.

Have fun and good luck with everything!

I thought for sure that would be the end of our RV days for awhile and I would have to go back to FL for IV treatment.

Instead my doctor treated with multiple oral antibiotics, supplements, heparin injections, and diet changes. Overall, I've continued to improve.

I have felt like it was definitely the right choice for me because I was able to tolerate the oral meds (and the Herxes) and stay active.

As part of your trip planning, look up the locations of health food grocery stores near where you are staying and plan to pick up a few items (organic food, non gluten bread, lemons etc.) the first day.

At restaurants, substitute green veges or a salad for potatoes and bread. Get an extra lemon or two in your water.

Consider buying/bringing powdered protein shake mix or some sort of nut based energy bar to help you keep up with vacation activities.

Be aware that sunlight, heat, hot tubs/saunas can all contribute to increased symptoms and/or cause Herxing, and be prepared to deal with it.

One thing I didn't see Waxby mention in his words about diet is that many Lyme patients do better on a no gluten diet.

Gluten interacts with the immune system in funny ways and seems to make symptoms worse.

For myself, our travels actually helped me. It got me outside and doing things when I might not have otherwise.

It gave me a sense of determination to get better, so that next time I would be able to do more.

It made me focus on the positive things in life, - family, loved ones, good times, good places - rather than the constant meds.

I am so glad that my LLMD said do it, and I sincerely hope that you do well whatever treatment you go with and that you enjoy your Disney trip!

Supermom2