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» LymeNet Flash » Questions and Discussion » Medical Questions » Treatment Center- input needed- please (Page 2)

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Author Topic: Treatment Center- input needed- please
Tincup
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Any editors?

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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Tincup, this looked really great and I have just some minor things only! GREAT JOB KIDDO!
My suggestion will be bolded for you to know the change/addition. Bettyg

[QUOTE]Originally posted by Tincup:
Editors wanted... no pay.. but a bowl of ice cream will be shared... some day!

This looks better on real paper.. but please check 'er over to see if I've missed any whoppers.. or have mis-spoken or mis-spelled stuff.

THANKS!

[Big Grin]


Chronic Lyme and Tick Borne Disease
National Center of Excellence

Mission Statement

The mission of the Chronic Lyme and Tick Borne Disease National Center of Excellence
(CLCE) is to advance and improve diagnostic and treatment protocols related to chronic
Lyme and tick borne diseases in humans.

Overview

The CLCE mission is to advance the complex field of chronic tick borne disease health
care by providing an exceptional in-patient, out-patient, and walk-in diagnostic and
treatment facility, complete with educational opportunities for health care professionals
and the general public.

The field of chronic tick borne disease diagnosis and treatment will be advanced by:

* Providing a comprehensive, state of the art health care facility for chronic tick borne
disease patients of all ages, RELIGION, degree of disability and backgrounds.

* Promoting extensive chronic tick borne disease diagnostic and treatment research.

* Building partnerships and linkages with international, national, statewide and local
community outreach groups and organizations to promote chronic tick borne disease
education.

* Educating present and tomorrow's health care providers concerning chronic tick borne
diseases through physician oriented programs.

* Assembling and integrating a variety of mainstream and alternative health care fields
in one facility to better serve the multiple needs of chronic Lyme and tick borne disease
patients.

Unique Features

The Chronic Lyme and Tick Borne Disease Center of Excellence will be the first
internationally accessible, integrated, multi-faceted, in/out-patient facility dedicated to
advancing health care for the growing numbers of chronically ill tick borne disease
patients world wide.


The Center's staff will be selected from a panel of tick borne disease experts affiliated
with established tick borne disease organizations.

SEPARATE PARAGRAPH HERE TINCUP:
Only those who have substantial experience in successfully diagnosing and treating chronic Lyme and tick borne diseases will be considered.

The Chronic Lyme and Tick Borne Disease Center of Excellence will be a facility designed for chronically ill tick borne disease patients NO COMMA TINCUP by tick borne disease patients.

Target Population/Eligibility Guidelines

The Chronic Lyme and Tick Borne Disease Center of Excellence will provide integrated and quality healthcare for international and domestic patients of all ages, with priority
given to chronically ill children.

Application & Selection Process for patients

International and domestic patients from all age groups will be eligible for consultation,
diagnosis and treatment for their chronic tick borne diseases on a first-come, first-serve tincup, BULLET the rest of statements so they stand out more about payment.

. Federal, state and private insurance will be accepted.

. Uninsured patients will pay on a sliding scale fee.

. No patients will be refused initial consultation or initial treatment due to lack of funds. TINCUP, UNDERLINE THIS LAST LINE...THIS IS CRITICAL THAT NO PATIENT WILL BE TURNED AWAY FOR TREATMENT.

Thanks...Bettyg; that's what I see right now.

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GiGi
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In case no one mentioned it yet, Green Building and medical personnel that works with ART --
It will save millions! and gets patients well a lot quicker.

Take care.

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VEE VEE
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Tincup.....
ABSOLUTELY FANTASTIC.

I could volunteer a day or 2 a month too, as long as it is not too far away.

What do you mean by

"Application & Selection Process for patients?"

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SuZ-Q
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I am totally blown away. This is incredible!

How about a training program for doctors wishing to learn more about the diagnosis and treatment of Lyme Disease. I know my LLMD went through training with Dr. J and Dr. B. that was invaluable to her.

If the sky's really the limit, you could have adjoining overnight facilities for those traveling to reach the center.

Holistic treatment with all supplements, etc. available at the center.

A library filled with lyme information that can be read while at the facility, as well as educational materials that taken home.

All possibly needed diagnostic equipment, including a lab capable of testing on level of Igenex, etc. on site.

This is so exciting!! Way to go Tincup!

Suzy

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Tincup
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Betty G...

THANK YOU! That is a great help for me! I am NOT a writer.. and to do this.. I struggle.. so any help I can get is VERY much appreciated. I used all of your suggestions!

Well.. all but one! And I have to laugh.

[Big Grin]

The bullet points! HA!

I would have to classify bullet points as a "window-opener".

That means every time I have tried to use them in the past... I've gotten soooooooooo frustrated that I am ready to open the window and toss the computer out the second story window.. kit and kaboodle!

MAYBE I will be brave enough to try it again... but don't count on it! It seems once they are there.. I CAN'T get rid of them!!!

HA!

[Big Grin]

Now.. for the other comments you have shared....

I will be copying them all today.. if the storms don't shut me down!

Keep them coming.. this is GREAT!

Oh... Someone asked about what "application process", etc. meant.. and I can't "see" the post at the moment to tell who it was. Basically it is a fancy way to say WHO will get help or not. Since I want NO ONE excluded.. it is in there. Got the words from other documents I've been researching to learn how to do this.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Marnie
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Where is Oxygenbabe...she is a medical writer, if memory serves me correctly. Would she be willing to help?

We need her writing skills and lyme knowledge.

Yo, Jill...are you around? Are you feeling well enough to take on the task? If not...I understand.

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Andie333
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Great job, Tincup; this is clear and, I think, probably a good starting point.

I did have two things:
First, I think of tick-borne as hypenated. I tried to do some research about this, but I suspect nobody really knows. It seems to be hyphenated in the majority of places but there are definitely others where it isn't.

I think consistency is probably the key, and you have been consistent here.

Then in the last section of the Overview section, Tin, you mention "assembling a variety of mainstream and alternative health care fields..."

To me, that's unclear. My suggestion for "fields" would be practices or treatments (or possibly modalities).

This really is an exciting thing, and I'm looking forward to subsequent updates.

Great job!
Andie

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bettyg
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Quote by Tincup:

"The bullet points! HA!
I would have to classify bullet points as a "window-opener".

That means every time I have tried to use them in the past... I've gotten soooooooooo frustrated that I am ready to open the window and toss the computer out the second story window.. kit and kaboodle!

MAYBE I will be brave enough to try it again... but don't count on it! It seems once they are there.. I CAN'T get rid of them!!!"

Tincup, I know what you mean about the additional bullets too! I've solved most of that problem.

Just hit enter 3 times and it should STOP your bullets unless you chose that feature again. Then I just go back up and delete UNNEEDED ones.

I learned in Wordperfect not word MS so I've never been able to figure out yet how to "reveal codes in ms word"! Would make my life so much easier than fighting the pc software.

BULLET BAD POINT: Hurtinggramma informed me today my post on LYME BROCHURE has gone gibberish again! The bullets instead are showing up as NUMBERS 6 of them!

So if you use bullets, that could be last minute thing or just add a **, star! We all want stars; that what our teachers taught us in elementary right? lol
[Big Grin]

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seibertneurolyme
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Tincup,

A couple of suggestions (electric has been off most of the day due to the storms).

Someone suggested changing the phrase "variety of mainstream and alternative healthcare fields" -- Maybe use the word specialties instead of fields?

Also, "The Center's staff will be selected..." -- maybe add the word permanent in front of staff -- after all the center will be training non-Lyme literate staff members if all goes well.

I think it should be " first come, first served" instead of first come, first serve.

A great job so far. Thank you for all the hard work!!!!!
------------------------------------------------

A couple more ideas for your list.

Hubby suggested earphones for TV/radio -- especially if rooms are not private.

Hubby also said -- NO ANTISEPTIC SMELL!!!

Some additional staff suggestions -- neuro-opthalmologist and epilepsy specialist.

Think someone mentioned a dentist -- a cavitat machine would be great.

Don't forget the VCS testing -- Visual Contrast Sensitivity.

Think someone mentioned a retreat center -- what I think would be really great are some on site apartments (maybe for those without insurance?) and require those who stay there to complete a certain number of non-medical hours service (kind of like community service)in exchange for basic treatment. Model this kind of like Mother Theresa did -- anyone who wanted to see her had to do some work in exchange for that privilege.

I have seriously been considering enrolling hubby in an adult day-care facility for maybe one afternoon a week. His mother was in a nursing home for a couple of years and some patients there would check in for a weekend or a couple of days for respite care -- to give the caregiver a break.

Think there needs to be a wing or a floor for rehab patients and others who need extended treatments such as hyperbaric but they do not need actual hospitalization or full-time nursing staff. This would not be covered by insurance, but it would be much more convenient if it was on-site rather than staying at a hotel.

Bea Seibert

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shazdancer
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I love it all, TC.

Perhaps your people working on this plan are already aware of it, but if not, emphasize for anyone investing in this project that you would be attracting patients from all over the country.

Emphasize for government types that your state would be a leader in the most recent scientific research on this disease, and that it would bring in patients and healthcare practitioners from all over the country.

It would be a "clean industry" to whatever community housed it. The only thing to account for would be biohazard disposal.

There would be no problem finding enough patients (enough paying patients might be another problem...). So yes, there would be a need to have some kind of housing nearby. And an endowment of some sort to help those that cannot afford the care.

Most of what I would wish for in a Lyme-literate facility has been covered here. An educational website is a must, and email access to a nurse or PA might help keep the Center in touch with patient questions and response to treatment.

And one thing about patient treatment: can the doctors devise a methodical way to evaluate the patient? A series of questions and protocols to assess the entire patient, each time he/she is evaluated? I think asking a Lyme-brained herxer "where does it hurt the most" just doesn't allow for accurate answers. (Been there, spaced on that.)

Take care,
Shaz

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duramater
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LATEX FREE.

If you PM me with your document as a word file, I will edit it. I am a freelance science/medical writer/editor.

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kgg
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I second the idea of a green building. If it is a new building, many materials will off gas making sensitive patients very sick. So attention to carpet, glues, paints etc that will off gas needs to happen.

Karen

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shazdancer
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ooh, one more...

How about an on-site lab for bloodwork?

A girl can dream, can't she?
--Shaz

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deb obrien
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What a great idea....I think it's very important to have a place to lie down in the doc's office - also, I really like the towel dispensers that work on some kind of electric eye - you pass your hand in front of it and a towel rolls down.....
deb

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deb obrien
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What a great idea....I think it's very important to have a place to lie down in the doc's office - also, I really like the towel dispensers that work on some kind of electric eye - you pass your hand in front of it and a towel rolls down.....
deb

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Tincup
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Beautiful, beautiful, beautiful!

I MUST say I am so impressed with all the responses! THANK YOU!!!

Now.. the good news and the bad.

I just got a call the meeting was postponed for 2 weeks.

Good cause I could REALLY use more time to digest, absorb and implement your ideas.

Bad cause I've about run myself in the ground working day and night on this... only to find out at the last minute I didn't need to push so hard.

Soooooooooooo.. we have a bit more time. Please keep thinking and sharing! It really is helping!

[group hug]

Now I think I'm going fishing!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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NP40
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Hey Tinny, I'm waiting for the fishing report ? [Big Grin]

Up here in northern Wisconsin we use normal sized Maryland fish as bait for our muskies ! [Razz]

Anywho, there's two very good LLMD's up here in the hinterlands who each essentially have their own lyme "clinics". Now, one of these is small, staffed with a couple of doc's and nurses. Their all LL.

The second Doc has a little more extensive operation with RN's, Massage Therapist, Holistic practitioners and even a LL Dentist. Can't go into it now but this doc and dentist are doing some amazing ground breaking work on diagnosisng, and tracking progress of lyme and co-infections.

I'll call both offices tomorrow and get their feedback and see if they'd like to contribute their idea's. With all the patient referrals I've given them, it's the least they can do !

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bettyg
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up for weekenders who haven't seen this...
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badkitti30043
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They need to accept all or at least most medical insurance , this is really important in my opinion as most of us are strapped because of high medication costs and can't come up with it and it would likely be a good idea if they also took medicae/medicaid for those who have that coverage as well.

Be sure they -Bill insurance directly as well on your behalf.

massaging chairs for infusion -when done on site is great idea - I agree, hyperbaric, phlebotomist on site for blood testing , wireless internet- hot spot / for laptop use while waiting.

Use only Lyme friendly labs, and specialist in many the areas we lymies need- but they must be very knowledable in lyme effects on the multiple systems..no quacks of any kind.

wide range of abx protocols, including the lesser used known/ or abx, and even very strong ones for those of us that have tried so many and are still extremely ill and hoping to find the magic combo that will help us.ie: Vanco and so forth

Neurologist, and imaging equiptment on site( mRI, cat, PET, Brain spect)equiptment would be great , but likely costly to own.



A group of dedicated LLMD's - not just one passing you off to the nurse or PA after your 1st or 2nd visit so they can tend to getting with the newly diagnosed instead of actually personally treating the patients they allready have.I am tired of being treated by PA's and nurses.

Close proximity to airport and hotels.

--------------------
Sandi
( badkitti30043)

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FightFireWithWater
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Maybe a Lyme patient Convenience Store that sells wrap-around sunglasses for the light-sensitive, sun-block and sun hats for those on ABX causing photosensitivity, sensible shoes that help you keep your balance and avoid falls, kitchen utensils and gear that help with the tendonitis. Of course it would stock acidophilus and other Lyme patient pharmaceutical/supplement supplies.
Fresh preservative-free heparin would be available for those using heparin flushes or using heparin in other ways.

Lists by city/region of social service providers, house-cleaning services, money managing/bill-paying services, reminder services, food-delivery services, assisted transportation services.

A guide-car for the disoriented to meet and return them to the highway.

Plenty of bathrooms.

I strongly support the already voiced idea of a "green building" that wouldn't have to out-gas for years before ceasing to make patients sick. Fragrance-free facility.

Cleaning and disinfecting materials and cleaning times chosen to avoid exposing patients to problematic odors.

Safe, tick-free, indoor-outdoor play areas for children designed for different ages and health challenges.

A safe (tick-free without using organophosphate etc pesticides) nature trail for families and individuals to connect with nature. Access to a body of soothing (unclorinated) water and mature shade trees would be pearls beyond price.

A lending library. Besides info on Lyme and associated illnesses, books, videos, CDs etc on living with chronic illnesses, stretching exercises, meditation, diet, healing music, inspiring films of people living successfully with and also overcoming challenges. (The library would have to have duplicates due to the high number of items that would be misplaced by patients.)

A quiet, safe room to come to when you are feeling you are in danger of "loosing it" in one way or another. This would be available both to patients and family members.

Stress-management and meditation classes.

Compassionate Communication training to aid family and other interpersonal relationships.

A "next-step facilitator" who helps patients who are feeling immobilized or unable to prioritize and stick to a goal. It could be called the "fly-paper" office. You go there to either get unstuck or to get some sticky stuff put on your feet depending on the need at the moment. [Wink]

Classes or a video for members of the immediate and extended family to explain what is happening and tips on coping. Friends would also be permitted to attend. Ideally the family would come to the center, but a take home video would also be available.

A meditation room with a variety of seating options. Very quiet with soft diffuse light.

A quiet room filled with dappled light to write/journal/paint/think.

A music room with excellent sound system and a collection of healing music suited to a variety of tastes. An area for stretching exercises would ideally also be available here.

Computer room for those without easy access to one.

A small room for patients with similar interests, such as artists, writers, parents, or students who might like to schedule their appointments on the same day to have an opportunity to connect.

Access for LLMDs and their staffs to all of the above mentioned facilities for managing stress. Talk about a stressful road to be on!

Above all, access to LLMDs, and their recommended medications. The dream of dreams would be not to have to lie awake wondering if access to their care and treatments could disappear.

[ 18. July 2006, 06:07 PM: Message edited by: FightFireWithWater ]

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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Aniek
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Tincup,

This has been a bad week for me and I've absolutely ignored this thread because of that. Have you submitted the proposal yet? If not, I'm happy to take a look and add any of my thoughts.

If you have, then please keep me in mind as a future helper or as assistance with the next steps. I'm in DC so just a hop and skip from MD. I have a fundraising and advocacy background and am shifting my gears into health related work. I would love to be involved anyway I could (looking for an executive director? [Wink] ).

One idea, since its in Maryland, perhaps there could be a space to plant trees for Billy. A park that would serve as a memorial and a place for patients and family to relax as they walk or sit outside.

--------------------
"When there is pain, there are no words." - Toni Morrison

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FightFireWithWater
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Aniek,

Tincup posted that the meeting on this facility has been post-poned for a couple of weeks so,yes, apparently there is time for more input.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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bettyg
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Fight fire, what great suggestions you made here.

Aniek, I loved the idea of planting MEMORIAL trees on-site there where other lyme patients could appreciate the advances their lives made, so ours would be better. Not sure if I phrased that right; lyme brain.....

Store also for food allergies: gluten/wheat free and casein/cow's milk free. Most importantly, if they could LOWER the prices making our new DIETS AFFORDABLE! Lyme is expensive enough with LLMDS, meds, etc. Lightning storms; got to get off for 3rd time!

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FightFireWithWater
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Thanks, Betty! So many have made great suggestions, including you! Maybe an on-site cafe that serves a variety of healthful foods and drinks as well as the market with healthy food items? I'd love to see patients encouraged to use extra-virgin olive oil and get plenty of omega-3 oils.

Yes, Aniek, I like the idea of an area perhaps in the garden that honors the first and second generation of advocates to whom we owe so much. Maybe a statue of Polly Murray?

[ 18. July 2006, 05:29 PM: Message edited by: FightFireWithWater ]

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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lisag
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alternative approaches in addition to traditional approaches: rife, KMT, ozone, herbs, homeopathy, supplements.

dr b, dr c and dr k's protocol's all found in one place!!!!!

ll/oral surgeon, since many lyme patients also have oral health issues

ll/opthamologist

ability to transfer all treatments back to local docs after in patient stay is completed.

references to local lyme friendly docs

what about checking out dr. bradford's place in tijuana, mx....american biologics (i think). they treat lyme there...but i don't think they are lyme experts yet.

gosh, this is soooo exciting. ever since i became ill my husband, family, friends and i have all been mystified by the fact that there is nowhere in this country to go for the inpatient care we patients completely disabled by this disease need.

hospitals and er's are a nightmare!!!!!! they just make you worse!!!!

a place like this can't start business/healing soon enough [Wink]

TC, i don't know you but i'm starting to love you.

thanks, lisa

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Melanie Reber
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We are already in motion with the Memorial Park project. I'm pleased that some of you are open to this idea in conjunction with the center.

Again, if anyone would like to help with the Memorial project, please feel free to contact me personally, or reply to the Memorial post:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=045367

(I could sure use a bit of help with this)

Thanks,
Melanie

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seibertneurolyme
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Tincup,

Stumbled onto this proposal for a Lyme/CFS chronic illness treatment center in Wisconsin. Looks like it is in the planning stages. Might give you some ideas for use in drafting your proposal.

http://www.panda-clinic.com/why_panda.htm

Bea Seibert

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Tincup
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Yo HO! Look at all the IN-FO!

Way to go!

THANKS!

[Big Grin]

I am still in the research mode.. so any ideas can be shared here still.

We did have a HUGE problem pop up the other day... and I was NOT happy. As you recall... I had said I would NOT accept the place if it were stocked with ducks.

Well, let me tell you.

Apparently, when money is involved.. ducks start coming out of the woodwork to get their hands on it. It is actually shameful to see what is going on. People who didn't give two hoots about Lyme or the Lyme patients are now pushing their way to the front of the line to grab the $$ and run.

It makes me SICK to see the money grubbing ducks doing this. How disgraceful! They should be ashamed of themselves!

And I am not talking about your every day little itty bitty ducks.. I am talking HUGE ducks!!! Even duck motels!!!

[Eek!]

I made some quick calls to whine and complain to friendly folks.. and basically all I could say was.. "the ducks are picking on me!" I was told not much can be done about it... because it is a war!

Yes... I had the winds knocked out of my sails.. but I have since re-grouped.. shook off my ruffled feathers... and decided I am not going to give up that easily.

Now.. My meeting hasn't been re-scheduled due to busy folks on the other end.. but I was told it would be.. probably in a month or so. I have another meeting... skirting on this topic... coming up next week that may help give me a better feel for what is going on... so I can better prepare.

I did learn their idea was to first train doctors... then later open their doors for the patients. Since this plan may require official stuff and lots of red tape.. this may take a long while. Of course I want it all today.. but that ain't going to happen.

So please know I am working on this as best I can.. getting advise from folks smarter than me.. bless their hearts.. researching till the wee hours of the mornings... and TRYING to make a real "dream" come true.

And I still need any and all help I can get from you guys! By the way.. Not one conversation has come up about this project, where I didn't say how GREAT the help I've gotten has been, from the folks here! Even the LLMD's are taking time to help me! THANK YOU all!

So keep up the suggestions.. know I am building on them and using them for these plans... and know I so much appreciate your thoughts and help!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Carol B
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Hey Tinny- It just occured to me- I'm certified- med tech certified that is-and since I am currently unemployed I'm AVAILABLE and wouldn't require big bucks-just room and board and free meds (actually that is big bucks) One for you, one for me, one for you , two for me, two for you, three for me... [Big Grin]
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lymemomtooo
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CB, you sure the word is certified? lmt
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FightFireWithWater
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Well, here's my off- the- wall, off-the-top of my head- not-thoroughly thought-out idea:

I don't know the latest research coming out about Western Fence lizards, but if they are still believed to "purify" ticks, I'd find a way to legally breed and export them from their natural habitat. After making sure of what they need to survive indoors in various climates, I would assign a lizard as an "animal companion" to not only the patient at the clinic but to all their family members, no matter where they live since there seems to be a familial connection in the case of Lyme disease. Every night, and after every high-risk activity, the lizard would be placed to do a full-body tick search to make sure that exposure to TBIs in susceptible persons did not continue. Testing would need to be done to ascertain whether the lizard could remove ticks from the scalp, ears, etc

Is that far-out enough? Or maybe a tick-robot that could scan you similarily? What about finding those people who built a tickfinding-robot for the garden?

[ 18. July 2006, 06:17 PM: Message edited by: FightFireWithWater ]

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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FightFireWithWater
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I have added several more suggestions to my original post that include having a "next-step facilitator", small conference room for affinity groups, and an educational program or video on what it is like to be a Lyme patient for members of the patient's extended family and friends.

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"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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FightFireWithWater
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The examining rooms would have paper robes that have various slogans similar to "I love to watch- you wash your hands" printed on them. These would be availble at all times in the rooms where invasive procedures took place. The convenience store would stock tee-shirts and sweatshirts with similar messages for home-care visits. (I would very much like to see this idea promoted in all doctor offices and hospitals and am thinking about offering these items as a fund-raiser. The statistics on uncessasary deaths because of health care personnel not washing their hands is enormous and it also causes antibiotic resistance. In the meantime, any of you fast-responders feel free to implement my idea. I think it could help save lives.)

There would be water filters in the clinic that took out the clorine so the staff would not get their skin raw from washing and thus be susceptible to germs.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

Posts: 1265 | From does not list | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
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