Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This week I will be meeting with some good folks who are interested in giving us a Chronic Lyme Disease TREATMENT Center. YIPPEE!!!!
I am in the process of writing up plans for the center. Since I have never planned out a treatment center.. or done anything close to it... I NEED YOUR INPUT.
First of all, I need your input to be sure I don't forget anything! Even little things.. like toilet paper and such... which as you know can be VERY important.
Second of all.. you all are knowledgeable about Lyme, etc... and I want to know what YOU would like to see if you or your family member were to be a patient there.
So please.. tell me what YOU would want... aside from good doctors, of course. The sky's the limit as far as money goes for NOW... at least that is the direction I want YOU to take when considering your response.
Who knows.. they may give us a broom closet sized space in a shoe factory... but hey.. we can dream can't we? I can bring the figures and our "wants" list more into focus when I know what they plan for the budget... but till then.. I want ALL suggestions so I can plan accordingly.
So.. help me help you! Let me know what you think is important to mention.
And THANKS in advance for your help. I'm sorry I won't be able to respond much.. as the meeting is this week and I will be full force into it.
WOW! A Lyme disease treatment center designed BY patients.. FOR patients!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
To help me organize this... and get 'er done...
PLEASE post your responses here rather than email or call me. I am not able to keep up with everything I am needing to do.. and having all the info posted HERE on this site will help me the most.
posted
I just came back from two months in Chico, where my daughter was having hyperbaric treatment for lyme. Those Chico Hyperbaric folks run a very good operation! If you're seriously considering starting a lyme treatment center, I suggest you talk to them and learn about their operation. (Contact info at www.hbotoday.com)The HBO center is adjacent to a doctor's office (one of the doctors there is affiliated with the HBO center, and is available when the hbo patients need to see a doc). They were well-organized and kind. Things were set up as much as possible for the convenience and comfort of the patients (what a concept!) We stayed at a conveniently located furnished apartment. If we had problems--even in the middle of the night--there were people available to call. I don't know if you are thinking about an in-patient center or out-patient. Frankly, before the lyme diagnosis, my daughter spent time at a well-known children's hospital, while I stayed at Ronald McDonald house. Although the logistics of that worked well for me (if not the hospital's anti-lyme attitude), I liked being in an apartment with my daughter and going in for daily treatments (in Chico) much better. Obviously, it depends of the nature of the treatment, etc. If you let us know a bit more of what you have in mind for the treatment center, I bet we could come up with more suggestions.
Posts: 991 | From California | Registered: Feb 2006
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minimal metal in building, away from cell towers= emf protection
kleen free used for pests and cleaning (Natural stuff so we don't have to smell it for months)
recliners
kids play area
bottled water
in house support meeting
treat heavy metal and parasite issues
staff to include colon hydrotherapists lymphatic drainage practitioners chiropractors reiki masters reflexoligts physical therapists bio dentists nutritionists
open 24 hrs
a store that contains natural and organic health
and beauty products, supplements, food,
clothing, a compounding pharmacy,
(with an ART practitioner at the check out to make sure you aren't wasting your $ on something your body doesn't need. And good enough ones that can test it off the picture in your wallet if that sufferer is not with you.)
books, videos, etc.
A rental station for rife and kmt devices, etc. (like a breast pump rental station)
Okay pinch me!
You said the sky was the limit.
lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I have so many suggestions---
but I would like to know also if it is out or in patient.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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-Comfortable seating in the waiting room, not the standard office type chairs. I have achey joints. -Air purifier in the waiting room (like my LLMD's). I hate it when I go to the doctor and leave sicker. -Hand sanitizer -Great literature about Lyme and a patient education center with lots of take home literature - A computer station with internet access so we can check lymenet while waiting for appts. - A tank with pretty fish to look at, very relaxing. - Don't forget the drinking water fountains - accessible and child sized too! Dixie cup dispenser for those very thirsty and taking meds. - Put some nice art on the wall. (No ducks please)
Bathrooms - plenty of toilets so we lymies don't have to wait.
PLEASE don't make me have to use a handle to exit the bathroom door. Make it push outward so I can use my rear and don't have to touch your poo germs with my clean hands. I know not everyone washes hands like I do.
Faucets that turn on/off automatically - hands free
Hand SANITIZER!!
Don't forget the Bathroom VENTILATION!!
Plenty of Nurses and PA's that call you back when you have medical questions and act empathetic instead of RUSHED.
I don't want to arrive to my appt an hour before so I can fill out tons of forms. Please send them home with me in the mail prior to appt so I can give thoughtful responses instead of rushed.
A standardized symptom journal or medication log to track my responses to medications.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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posted
A Massage therapist or at least a few of those massaging chairs.
Scratch the drinking water fountain - have a nice water cooler instead.
Make sure the waiting LOBBY is big enough. Don't forget the coat rack.
Recliners and tv in a separate area for those getting IV's.
No steps - must be accessible!! Please put a automatic door open button for those in power chairs.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I would like to see LL GYN and urologists on staff along with a LL nutritionist specializing in yeast issues.
A dr who treats the whole body.
plenty of beds where patients can rest to heal up while being treated.
Laptops for all Dr so they can just type away and all dr have access at all times to your file...and can actually read the notes.
Physical therapist to help with excercise which Dr B stresses is important in recovery.
being accepted to facility does not require a positive lyme test.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Please please say that this will be an inpatient facility.
Totally gave up on hospitals and ER's a couple of years ago -- would have brought hubby in for observation of his seizure-like episodes and temporary paralysis episodes if I had had confidence that anyone would or could help.
Very scary when you don't know if the person is having a stroke or not -- especially when it happens 2 or 3 times a week in the middle of the night. IV Primaxin did seem to stop the temporary paralysis episodes, but I am still upset that it took so long to get to that drug.
Don't forget the LLMD gastroenterologist -- have yet to meet one of those and they are urgently needed.
Need docs on site or on call 24/7 -- hubby recounts that during one of his psych admits another patient was given Ativan when all he really wanted was an aspirin for a headache -- but of course aspirin was not in the chart and Ativan was -- might have helped him sleep, but didn't do anything for the headache.
Hubby does not have major problems with pain, but many do and treatment for that can be hard to come by.
Standard testing for all tickborne patients should include basic detox tests such as those from Great Smokies to check functional liver status, glutathione and lipid peroxides.
Also need an LLMD endocrinologist on staff as well -- way too few of these to go around.
How about a real live herbalist as well -- need to have some options and adjunctive therapies to help everyone.
I will come back and add more when I have had a chance to think about this topic more.
A lab or pathologist on site who will look for babesia on a slide!
Another biggie -- none of that standard hospital food -- besides the yeast issue, many are on gluten free and milk free diets as well.
Need to offer tests such as SPECT scans that are hard to come by outside of very large hospitals where they usually don't know how to read them.
If we are dreaming here -- the new trend in hospitals is private rooms for everyone. Sleep is very hard to come by in hospitals.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Carol B
Unregistered
posted
in patient or out patient ?
if it's outpatient:
raised toilets in bathroom bathroom bars to hold onto no stairs recliners low lighting in waiting room
in patient: all of the above plus
sleep number beds computers lounge with library of lyme books/leisure reading lounge with TV/ DVD player and supply of comedies chapel chef dancing lessons
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good good good! Keep 'em coming and THANKS! ALL suggestions welcome and are helping me think!!!
Answer to questions..
"Who is supporting it and where is it going to be?"
Actually, until it is a done deal and the details are worked out.. no one will know exactly where it will be.... because it hasn't been built yet. Did that make sense? The location will have to be approved by the big guys of course.. the ones with the money and the heart to do this project.
I am simply submitting initial proposals of things we want... and various sites from my proposal will be considered. But it will be in Maryland.. if that helps.. and it will serve ALL people from anywhere.. if I have my way!
Government monies will be used initally... and will continue to support it, I presume (?).. (I'm not a hospital administrator and am not versed in how that all works.. but it will have folks who DO know all that stuff, that will be working there).
And payments from patients or their insurance companies... as people are diagnosed and treated will help support it. Like a hospital or doctors office, I guess.
Will it be ... "In-patient or out-patient?"
I'd LOVE to see both... and that is what I am pushing for! A walk-in clinic for those just bitten for prevention measures.. and a regular doctors appointment office like thing... and a long term care facility to support those who are very ill.. and physical therapy, etc... all specialities of docs would be nice.. and a lab. Oh.. and an education center. And yes to the hyperbaric as a request.. it is in the proposal already.
Now.. remember this is my initial response to propose what we want or will need. I am preparing this paper to present later this week.. to let them know what we want... and I don't have many answers and can't say anything for sure. But you can bet your bippy I will let EVERYONE know ASAP!
Just hope and pray it isn't a broom closet in a shoe factory!!! Unless of course.. the ice cream is free!
And thanks! Your responses will help ME to write up what WE need. If I go in the meeting unprepared... who knows what.. if anything.. we will get?? Keep the ideas coming.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Integrative Care. Drs trained in both medicines. Nutritionist as a frontline step. We should not have to wreck our guts before we learn about how to eat and supplement to protect ourselves from the treatment damage.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"the new trend in hospitals is private rooms for everyone. Sleep is very hard to come by in hospitals."
AMEN to that!!! I ALWAYS insist on one.. don't always get one.. but always insist.
I really don't love hospitals.. and that is one of the biggest reasons... besides the ducks!
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Many good ideas..Add someone with some good psych training..Perhaps address OCD issues with the furniture..ie, vinyl isn't as comfortable but much easier to clean.
No flowers..
in patient: rooms large enough to accomodate a recliner or comfortable window seat so parents could stay.
Adequate and accessible parking.
creative educational displays for all ages
tons of washable toys for the children..
Compassionate, well-trained personnel.
Someone already mentioned not requiring a CDC positive..I second that..
A person to be community liason to help with the non-medical aspects of this. Also to plan educational programs.
I pray this is not a dream and it will really happen..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I am still unclear on the status of this project. Have you been told that funds are availabe, that this will be done, let's sit down and work out the details? Or are you submitting an unsolicited proposal to someone with the hope that they will fund this? Or ???
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Another thought: I've often wished that my LLMD had a "patient educator" on staff. this person could be available to explain the ins and out of the various medications, nutritional supplements, whatever. If a question was raised that this person couldn't answer, she/he could ask the doctor and get back to us. Even when the doc spends a long time with us, I invariably have more questions. It would be good to have someone else to consult.
Posts: 991 | From California | Registered: Feb 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Ok folks, let's dream big..Who knows if it will happen but maybe someday it will and I personally am excited about the prospect..
Way to go as always Tincup..Whether it is a plan or a sure thing..I am in..
Could it be at the beach?
I have tried to talk one of Becky's medical professionals into doing something like this for a couple of years.
But since I am a Rehobo, I have told her to do it there and let me have a lean to next door..WELL, it is due to the therapeutic power of the ocean..And Grotto Pizza, etc..
You could add in a garden, tick free with a maze for kids on their down times or for power chair races..Ha..
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Wow! this is amazing news! Everyone's ideas are great.
May I add a few:
Staff willing and able to work with our local docs and careproviders when we go back home.
Staff open to the varying needs of people for different protocols. Some people cannot tolerate ABX or other RX meds. Some people swear by them. Alternatives.
Access to much less expensive treatment so we don't all have to go to the poorhouse.
Please let them take Medicare.
Have them keep statistics on us to be used for science, research, and the advancement of diagnosis and treatment of lyme, and to educate the public with.
Can we have a cafeteria with organic, whole, unprocessed foods?
I'd like to have some tapes/CDs to help me visualize lessening stress, and helping my body-mind-spirit to heal.
Help us to cope with handling this difficult, chronic, and misunderstood illness. Give us tools we can take back home and share with others.
This is wonderful, Tincup! Thank you, thank you. Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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posted
Some of these ideas got me thinking that our problem is that we have so few medical specialists who are knowledgeable about Lyme. So we wind up designing a perfect facility with few doctors.
So maybe the training of doctors from various disciplines should be a major part of the program, maybe using the place as a rotation for residents from the nearest medical school.
Wait, cancel that. Not the "nearest" medical school, because that would probably be Hopkins. Maybe it should be a training program for specialists already in practice. Like Dr. B has done.
If it could be an outpatient plus in patient facility that would be the best. Like Bea said there are so many times we might need a hospitalization but it's too risky to submit ourselves to facilities that know nothing about Lyme.
It's a miracle that you got this opportunity for Lyme patients.
Have any of the doctors in ILADS been able to give you any help with this? They should have a good idea of how medical facilities operate. This seems too hard to be put on your shoulders alone. I worked in hospitals and clinics my whole career, and don't have a clue as to how to set this up.
On the other hand, you being who you are, you will probably be able to pull this together. You do manage miracles. Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I can't believe how GREAT the responses are! I've copied them all down.. and sorted them into catagories.. like...
"Structure", "Services", "Staff".. etc.
This REALLY helps.. ALL of it. Not ONE suggestion I haven't used!!!!
PLEASE keep thinking and posting!!! You are making MY job easier. My brain is NOT having fun today... couldn't remember what a "fishing lure" was earlier. Maybe that's why I didn't catch anything out back this evening? Darn!
Yes.. EllenLu.. do what you do! My pleasure. Thanks!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
EllenLu..
As you know.. ILADS docs are normally busier than a one armed paper hanger... so I figured I would put together something and then have them check it over to see what might work or not work... and use their suggestions at that point.
The ones I have contacted previously have been WONDERFUL... and are helping. So are the folks that head up groups.. like the LDA and affiliates! It is exciting news for all... and I appreciate all the help I can get.
Keep up the ideas.. I am writing ALMOST as fast as you all are sharing them!!!
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
There have already been so many excellent suggestions. Forgive me if I'm redundant, because I couldn't retain all that I read but my thoughts were:
-- Food service, with access to sugar-free, yeast-free type foods
-- internet access throughout the facility to allow patients (in patient or out patient) to connect to Lymenet and to other people
Too late for more thinking; keep us posted about this, TC. It sounds great!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
socail work, individual and family counseling to help patients and their families cope with the many changing faces of this illness.
Maybe regular weekly on-going groups for nutrition, stress management, med management, motor and cognitive skill hints.
Also specail suport medical staff who would train patients and their families how to do things like giving shots, accessing ports, mixing IV meds, teach transfer skills for patients who have motor impairments.
Recipe resources for folks changing to healthier diets.
of course everything is handicap accessable, including handrails on both sides of hallways.
That's all I can think of right now, thanks
Posts: 663 | From NH USA | Registered: Sep 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I don't know if this has already been mentioned; I read all the posts but forgot them already.
Ha! A memory machine!
No, no, just kidding...
but what would be helpful, that I don't think I've seen are... Ummm... what are they called? case workers? guidance councelors? I don't know if that's what it's called but people who can help you navigate all the stuff that needs navigating.
Otherwise, I'd like to cast a vote for places to lay down while waiting, I've only been to one LLMD that had a couch, couches are good!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
when I relapsed in 2004 I was soooooo suicidal and I called my insurance company trying to find an INPATIENT facility that dealt with lyme. I was so shocked that there was NOT one. I thought that by now there would be.
silly silly me. I thought more research and money had been thrown at it while I had recovered and tried desperately to forget my lymie past.
I still remember crying to the woman on the phone saying, but lyme has been around for decades and it is such a multifaceted disease you cant just see ONE doctor!!!
the team of docs like they have at mayo---but NOT mayo docs in patient care for acute patients whether it be emotional or physical.
I think bridging the gap between the emotional and physical in this disease is ESSENTIAL.
Also---for women with the disease you need to address hormonal issues, GYN, and related problems.
ANd if there are waiting rooms...yes couches. lying down. is a must.
will think of more I am sure, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
Golly, you all got a good head start on me!
added: MDs who take TITLE 19/MEDICAID patients.
allergists like Dr. K in LaCrosse, Wisc.
NO SMOKING nor allow folks who smoke to come into the waiting/hospital rooms for us chemical sensitive people.
NO PERFUME, AFTER SHAVE, HAIR SPRAYS ALLOWED
HANDICAPPED TOILETS ---- 50/50 with HIGHER SEATS and bars on side panels; 3-4 handicapped stalls at least for wheelchairs
NO GLARE, REFLECTIONS for our super sensitive eyes.
smooth, non-glare surfaces
helium ? low lights & NO OVERHEAD LIGHTING
carpeting TACKED down ... NO GLUE used...
QUIET AREAS
kids area AWAY from patient waiting room for peace & quiet for super sensitive ears like mine to noise...
cable tv, DVD, VCR ... COMEDY shows available.
LIFT OUT CHAIRS for those having hard time getting up/down and recliners.
DIETICIAN for those of us allergic to WHEAT, MILK, AND SUGAR/diabetes 2/1.
SPOUSE support groups for them to share their feelings with others walking in their shoes
SSDI, social security disability insurance, benefit advocate who could help on preparing the in-depth application so people are approved 1st time, 1st try!
as I think of more; I'll come back.
gyn .. can't remember if that was mentioned or not
posted
Tincup, a heartfelt THANK YOU for pursuing this with the men of your dreams making this a reality for us all! ATTA GIRL TC; yes, you may eat your ice cream now for the rest of your life.
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Have some more ideas. Hubby has been in way too many hospitals and ER's.
Allow patients to schedule their own appointments - no Dr. referral required.
For all new patients - an intake eval by a nurse practitioner or patient coordinator - need someone to explain all the options available to the patient and help them decide which specialists should be top priority - this could even be done over the phone or internet.
Might even be a good idea to offer group tours of the facility - chronic patients may need to see what is available and then arrange financing or insurance pre-approval prior to actually scheduling appointments or hospital stays.
Make tape recorders available to all patients so they can tape what the docs and nurses tell them - could mail the tapes home to bypass airport security.
Sleep studies as needed. Sleep apnea is a big issue.
Unlimited visiting hours or at least greatly extended visiting hours.
Share medical records with patients as they become available - it is ridiculous to wait 2 or 3 weeks to get copies from medical records after you have been discharged. Most chronic patients are very familiar with their medical file and it is much more efficient to ask questions as info becomes available.
Include acupuncture - helps some patients greatly with pain.
No ``cookbook medicine'' - need individualized treatment where the patient in consultation with the doc decides how quickly to ramp up meds - even in a hospital I would be very nervous about hubby getting full doses of most meds without starting out at a quarter dose or less to begin with. He herxes with meds and herbs and colloidal silver and just about everything else.
Nutritional IV's - magnesium, Vitamin C and B12 shots etc. Also glutathione and the P.K. protocol (IV phosphatidylcholine).
Training for patients or caregivers who want to do their own IV meds at home - much cheaper than home health care.
For detox - sauna and ION foot bath.
Another testing method that does not get discussed a lot is thermography. Can be useful for patients with pain and also to pinpoint other systems in the body which may need further evaluation.
Hubby applied for but did not get accepted for a round table discussion at the NIH - this is a case presentation where a group of docs evaluates the patient and makes suggestions for testing and treatment - this would be a good learning opportunity for med students as Ellen mentioned. Family and caregivers and some patients would be interested in attending lectures or discussions like this.
This idea comes from one of hubby's psych admits. Some hospital rooms need to have closed circuit TV's so the nurses can monitor the patients without disturbing them. Hubby has various movement disorders which are usually worse in the middle of the night when no doc is available.
Most people can relate to tremors or myoclonus. It took me a while to learn the additional terms asterixas and geggenhalten. I have frequently wished for a VCR, but it would be next to impossible to film while simultaneously administering IV meds.
And then there are the seizure-like episodes - I don't have a stop watch and can't always be sure how long they actually last. And early on the docs would argue that hubby did not really lose consciousness even though the EMS people had to carry him out on a stretcher more than once.
A tape would have sure saved me some grief and it could be very educational for those docs who like to say, ``This doesn't make sense.'' As they say, a picture is worth a thousand words.
Also, take a Polaroid snapshot of every patient for their chart at every appointment - some docs do this for new patients, but a series of pictures over time could show changes in Bell's Palsy or muscle wasting issues.
Need hotel or furnished apartments near-by for family and patients who do not require hospitalization. Should be able to rent by the week or month as needed.
Several months ago I did a search and discovered that there are over 100 nurses and RN's registered on LymeNet. Maybe you should start another thread and ask for input from nurses specifically?
That brings me to my final suggestion. How about some sort of plan where chronic patients or family members could volunteer to man phones or answer questions or serve in other capacities in exchange for credit to apply towards non insurance covered treatments? This could be a cost savings for the facility and help the patients to afford more treatment options.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
What a great idea! How about a neuropsych person for testing; spect scans offered on site?
There is a doctor in town here who always reviews a patient visit; talks into a mike which then types out the visit summary via computer. That way, his patients have an excellent record which can be placed in a notebook for easy reference.
When I leave the doctor's office I try to write things down that were discussed and pray I haven't forgotten anything. Have been known to screw it up, too!
Thanks, TC!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Wow, Thanks so much for the hopeful news. I live in VA and wouuld be so grateful to have something like this nearby.
My wish list:
Library with good info.
Comfortable seating, lighting.
Quiet areas.
Infusion center.
Nutritionist.
Urgent care avaiable (I can no longer find an ER who will treat my migraines as I need them to. I almost died from bleeding kidney stones while on coumadin while sitting in ER for 5 hours.)
An area where patients could chat while waiting. Pediatric Lyme Dr.
Thats all for now! Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
WOW! Went to post some ideas but you guys have it down already!!
TC, THANK-YOU, for ALL you do!!!
This thread is GREAT!!! Posts: 4258 | From over there | Registered: Jul 2001
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Tin Patch Adams?
Tin, you should get in touch with the Columbia Lyme ctr folks. Having a center affiliated with a reknown teaching hospital would be a great credibility enhancer.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Woah... I am simply amazed by the responses here.
Ya know... When I asked for help.. I didn't really know what would pop up.. if anything! I am so pleased with the responses.. but at the same time I am rather sad that so many people are needing so much and there isn't anything like this already!
But what I am seeing here... WOW! The ideas are so well thought out and soooooooo appropriate!!!
And the truth is.. I am now feeling quite dumb! Because for as long as I've been doing this Lyme stuff.. I would have NEVER been able to get such a detailed and extensive list of things to consider.
And don't worry that you may repeat what others said. I want YOUR ideas. If some are repeated.. fine. It shows that others think that item is important also!
Keep it up.. I'm listening!!!
THANKS!
By the way.. once the lists are done and delivered... I will post what we have in the event they are needed later by someone.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
NOt sure if it is here already..But what about a rehab area where you could just do a drop in ..Perhaps with weights, machines and ramps, whirlpool and wading pool?
Some male hunk celebs to visit and boost spirits..
and some entertainment/distraction for the kids..clown, face painter, etc.
Posts: 2360 | From SE PA | Registered: Mar 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Would this be in a state that "allows" an alternative approach?
If so...
Rife unit...can treat multiple patients at the same time...computer driven with frequencies sent thru an argon (blue gas) light for very complicated reasons. The most effective.
Ozone sauna.
Hyperbaric chamber - one that will also treat multiple patients.
A massage therapist...one who knows and can teach others Voddar lymph massage.
A treadmill and a recumbant exercise bike to encourage some exercise...just a little.
A TV with a DVD player and lots of funny movies.
Music piped in...healing music only such as "In The Key of Healing". Mozart works too (increases dopamine).
A befe "detox" unit.
A far-infrared sauna.
Yea..unscented TP and ...an ADA height toilet (2" higher). It is MUCH easier to get on and off!
A library of books about lyme, books of jokes, and books about nutrition...esp. alkaline diets.
Simple games that can be played by 2 or more to pass the time. Such as Quoridor, cards, etc.
A very "clean" environment...state-of-the-art air filtration.
A good water source. Reverse osmosis at the least.
A non-denominational minister on staff to give spiritual support.
Pipe dream...I know.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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bettyg
Unregistered
posted
Bea, wow; was I ever impressed by all your 1st hand experiences w/hubby on all your wonderful suggestions.
I love the idea of helping to man phones/answer questions, etc. to help with NON-covered insurance things. Bea, you are a walking GOLD MINE!
TC, since light bothers so many of us......
limited windows in the building and exam room, and shades where the patient can control how much light is coming into the room...
DOUBLE the size of exam rooms for us claustrophobic and panic anxiety folks!
Exam tables....as much PADDING on them as we can get since we all have fibromyalgia pain, and hurt so bad all over!
Extra cushioned chairs in the exam room for patient/family members.
additional, MANY well-trained LLMDs to help with the HUGE WORKLOAD of lyme patients that will be coming to this NEW facility.
1 MONTH 1 MONTH WAITING PERIOD ONLY TO GET IN; not 2-6 months to get in for an appt. WAITING PERIOD ONLY TO GET IN; not 2-6 months to get in for an appt. Less than 1 month would be preferable.
Tincup, I agree ... the ideas folks came up with are just beyond belief and so detailed in so many cases like Bea's comment! That's it for this round.
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posted
Would love to see it in New England but locate near an airport.
Have the clinic serve as a patient population for clinical trials of all the things we need to document...can think of millions of things we could study related to diagnosis and treatment.
Instead of normal hot tub, a thalasso whirlpool with epsom salts thrown in.
Pain Management Specialists
Support group meetings
Long term inpatient facility for the sickest of the sick-when hospitals wont take you and you cannot function in your home. (I couldve used this for about two months.)
A dart board to post name/faces of docs who neglected you.
Wall of success with stories of recovery.
Art therapy center--gallery of artists work who have lyme or chronic illnesses.
It is good to dream of such a place, it would validate this illness and that is what is desperately needed.
-------------------- We are spiritual beings on a human journey...
posted
I had posted another long response, and just looked; it disappeared. Hope I can remember all I put down.
Bea, I sure was impressed by your detailed list as a lyme patient spouse! Loved the idea of helping answer phones/questions to cover NON-covered insurance issues.
Since majority of us have LIGHT SENSITIVITIES....
limited windows in the building and exam rooms and with SHADES so patient can control how much light they want....
DOUBLE THE SIZE OF EXAM ROOM for those of us claustrophobic and with panic anxiety.
EXAM TABLE ... THICKEST PADDING you can get for our fibromyalgia body pain
THICK PADDED CHAIRS in exam room for patient & family member.
I can't remember the rest of what I typed.
Tincup, I too, am overwhelmed by the well-thought out suggestions everyone has contributed to your question! My what created & talented lymies we are! Bettyg
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Usually it is in the beginning that we are so ill with lyme & tick borne diseases. These need to be addressed immediately. ASAP!!!
It should be a place that people do not get the run around like with all the other ducks.
It should be a place where one can go and be seen, tested and treated. And hopefully at a reasonable cost and insurance to cover majority at least in the beginning.
(would be nice to have an in house CBC machine and maybe some medabolic panels to help quicken blood results and treatment.) Also any kind of treatments, such as with IV.
Educate the patients, then continue with broadening with all the other stuff everyone has mentioned here.
Hopefully it could educate other doctors about diagnosis and treatment as well.
It can be advertised and really take a public fight against lyme and public awareness.
If we can just get our foot in the door, we can take off from there!
Way to go Tincup! Where are you thinking about having one in Maryland?
OH and it also needs to treat children!!!!!
Posts: 107 | From MD | Registered: Jan 2004
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You asked a while back about this doc, if more intel is needed PM me.
Dr. Y is a ID duck in Annapolis who told me LD is curable w/ 2 to 4 weeks of doxy.
And then told me I just haven't found a Dr. smart enough to figure out what was wrong w/ me. LOL..... certainly not you huh?
Affordable, compassionate care that treats the whole person would be terrific.
[ 26. June 2006, 08:12 PM: Message edited by: stella marie ]
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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Carol B
Unregistered
posted
LMT-"Perhaps with weights, machines and ramps, whirlpool and wading pool? " Who you kidding?
First of all when I was packing for train to CT. I was afraid my luggage exceeded the 50 lb limit it was so heavy-so I weighed it-and it only weighed 15 lbs !
So when 15 pounds feel heavier than 50 pounds-there's a problem. Bottom line- if there is a weight room it better start with ONE POUND weights.
And that wading pool better have grab bars on it.
Who you trying to get buff for anyway???
If I do any walking it sure isn't going to be on any machine- I would prefer a level walking path through a waterfall/rock garden.
Which brings me to the fact, I am not sick enough to need inpatient(except for mental reasons)-but I sure would like a retreat house.
posted
Im a pragmatist so I only want the bare essentials to make me be the best I can be.
Im not going to live there so all the fluff will just add to my costs.
I doubt insurance will be accepted so every effort should be made to keep things as cost effective as possible.
I want a doc who is willing to listen with an open mind that knows lyme but is not afraid to tell me that certain symptoms might be from somthing else.
Dont want anyone with tunnel vision.
I would very much like to drive the biggest most expensive safest care available but I cant afford it.
I take the same approach to chronic lyme. Getting treatment from a doc whos is spending tons on fluff will put them out of my range of possibilities.
Posts: 561 | From connecticut | Registered: May 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Miss Tincup..Count me in on the volunteer list for the new place!!! I could do something a day or two a month if it was within driving distance..
And Carol, they could make accomodations for those who are to weak to lift..HOw about starting with helium balloons..And moving up..Ha..
AND I have a good retreat planned for you so behave..
Posts: 2360 | From SE PA | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cave.. good questions... but now can't see them.. and can't remember them!! Hold on a minute!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ok..
YOU SAID... "Could/would it have a visiting/pro bono Lyme Literate doctor? Or even a *real* llmd who donates his/her time one day at a time?"
*It will have ONLY LLMD's ... and they WILL be ILADS members... or we won't have any!
After all.. what's the use in having ANOTHER duck motel? I mean HEY... if we needed a duck motel.. we could save bundles of dollars and just use the already existing ones.. Mayo.. Hopkins.. Yale.... etc.
I made it VERY clear from the get-go that we would ONLY use ILADS doctors who had experience treating CHRONIC Lyme disease. The word CHRONIC automatically disqualifies the big duck motel ding dongs.
I've actually said I will NOT be a part of anything that has ducks (but I didn't use THAT word in the meeting)... cause we already have a bad enough time without adding more problems. ````````````````````````````````````````````````
YOU SAID... "Would a practicing llmd (if they volunteered) be able to rx *as it should* be and not *as the CDC/AMA etc say*?"
They will follow the ILADS guidelines.
Now if you walk in there and say.. "give me bicillin injections for 16 years because I think I need them"... or "give my kid Mepron cause I think they have babs but don't want to bother with the tests"... NO! That WON'T happen.
They will follow the ILADS guidelines.. and use THEIR best clinical judgement. ```````````````````````````````````````````````
You said.. ***Government monies will be used initally*** What government? Will the CDC have some say over that? Who will control the purse strings? Someone friendly?"
My gosh you ask a lot of questions, oh dear one!
To be totally honest.. would it be ok with you if I don't go into too many details right yet?
First.. I don't have all the answers right now and all I could do would be speculate and/or guess. Remember PLEASE... this is a proposal I was asked to submit to folks interested in the project. They are trying to HELP us and are willing to listen. That is why I need a written proposal to submit NOW... outlining the basics.
And truth is... I don't want ANYTHING to interfere with this process.. nor do I want to promise you or anyone else anything until it is a done deal.
May I add... I think you and others know me well enough to know I am going to go to the limits to try and make this happen... for ALL of us. I am going to "work it baby work it"... the best way I know how.
Once I have a done deal.. I will be able to share more. I am sure you understand where I'm coming from... eh?
And hang on.. I am SURE I will need LOTS of help with the details! I'll be looking for volunteers who know stuff to help put this together IF it becomes a reality! `````````````````````````````````````````````
YOU SAID... "Will this clinic eventually be able to make a profit or would it aim for non-profit status? Who will hire/fire? Or, better put, who will be doing the work. Depend on volunteers solely? (Tied in with the profit or non-profit question.) And just what will the clinic do?
If I could answer all that... I certainly would. I know NOTHING about that detailed kind of stuff... and it is too far removed from my immediate work load right now, that I haven't had time to think about it.
What I can say is what MY dream would be...
A patient friendly facility.. VERY patient friendly. (I've been ducked by over 180 doctors in the past.. so I know what I DON'T want, for sure)....
Filled with wonderful LLMD's who don't have their necks in a noose and have to face firing squads made up of idiot no-counts ... AND who can make a living doing a rewarding job in a nice environment.
All of the above... with the future goal of having NO MORE CHRONIC LYME SUFFERERS because education and research has finally addressed the situation properly... and we have a cure for everyone.
````````````````````````````````````````````
But watch out for the broom closet in the back of the shoe factory!
posted
Enough RN's to be able to do Patient Education while they are doing physical cares of patients. We were trained to do Patient Education, but it often gets slid over because we are too busy with all of the other things we do. Have computers in every room so documentation can be done there. Have dorms designed so that a limited amount of writing need to be done. This saves a lot of time in documentation. I could go on and on. Have some nurses who are currently working with LLMD's give you some help. I am sure those of us RN's who are Lymies could give you a lot of help when the time actually comes to do the specific planning. Ann
-------------------- Ann Posts: 66 | From Bourbonnais, IL, USA | Registered: Jan 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
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, degrees of disability and backgrounds.
* 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. 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, 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 basis. 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.
posted
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!
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.
* 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
Frequent Contributor (5K+ posts)
Member # 259
posted
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.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
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
Posts: 260 | From Virginia | Registered: Jul 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
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!
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.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
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.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
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
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
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
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
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
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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If you PM me with your document as a word file, I will edit it. I am a freelance science/medical writer/editor.
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
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
Posts: 1686 | From Maine | Registered: Jun 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
ooh, one more...
How about an on-site lab for bloodwork?
A girl can dream, can't she? --Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
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
Posts: 122 | From richmond, ca, usa | Registered: Feb 2004
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posted
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
Posts: 122 | From richmond, ca, usa | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Tinny, I'm waiting for the fishing report ?
Up here in northern Wisconsin we use normal sized Maryland fish as bait for our muskies !
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 !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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bettyg
Unregistered
posted
up for weekenders who haven't seen this...
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posted
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) Posts: 664 | From Atlanta Ga. | Registered: Aug 2002
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posted
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.
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.
-------------------- "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
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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? ).
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 Posts: 4711 | From Washington, DC | Registered: Mar 2004
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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! Posts: 1265 | From does not list | Registered: Jun 2004
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bettyg
Unregistered
posted
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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posted
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?
-------------------- "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
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