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» LymeNet Flash » Questions and Discussion » Medical Questions » How can the less fortunate, who need & deserve to see a LLMD, be helped to afford it? (Page 1)

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Author Topic: How can the less fortunate, who need & deserve to see a LLMD, be helped to afford it?
jjeennnniiee
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I totally understand what's been said about why LLMDs don't want to take insurance, especially after reading Tracy9's post.

It would be nice though to see them do a little bit of charity work for the less fortunate.

Perhaps use a sliding fee scale for some and/or see some for free, with proof of income, of course.

Perhaps allow for a set number and even have a waiting list, where when one patient gets well, thus an opening becomes available, another less fortunate person takes their place.

I must admit, I do have to wonder, if they're truly interested in helping people get well, then how come they don't???

I realize, they can't do it for everyone, but would a few really hurt???

Besides, a lot of other doctors do it, but to my knowledge, not one of them do, do they???

Imagine if each one did that, even to a small degree, how many less fortunate people they could help get well, who aren't able to otherwise!!!

Others replied to the post suggesting payment plans and a fund contributed to by the more fortunate also, which I think are great ideas too.

Anyway, that's just my two cents.

So, why is it then, aside from the insurance woes, none of it's being done??????????

I'm sorry, but it does have to make me wonder..........

[ 28. June 2008, 04:16 AM: Message edited by: jjeennnniiee ]

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My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Tracy9
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I know of some that most definitely do this.

I'm sure it is not something that is widely advertised, since it would obviously get out of control in no time.

With any illness or disease, there are always newer, better, more cutting edge treatments available if you have the money.

With cancer, or anything else, many people cannot afford to travel or pay for newer or experimental treatments that their insurance doesn't cover. This is not exclusive to Lyme Disease.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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jjeennnniiee
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If they do actually exist, then I'd sure like to know who they are.

I know a lot of people, besides myself soon, who could definitely use it, because without, they are needlessly suffering or will.

Surely, someone here knows and wouldn't mind sharing that information with the less fortunate!

I understand what you're saying about the big treatments, inaffordability of travel, and the non-exclusivity of lyme.

At the same time though, that's not exactly what I'm referring to, even though it does have it's place.

Most LLMDs generally follow a fairly standard course of treatment though, meaning frequent vists, along with prescribed antibiotics, thus that's really more of what I'm referring to.

Prescriptions are one thing, even though there is the availability of certain free drug samples and assistance programs, but visits are much different.

While time is money, it can also be donated, to a reasonable degree, without having much of an impact on profit.

Besides that, charitable contributions make for nice tax deductions, especially for businesses, who can often file them as losses.

That's just my two cents, anyway.

My intent certainly isn't to open up a big debate, as it's really only to see if there are some common agreement on my thoughts and real answers to my questions.

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My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Adding to this is the hippocratic oath every doctor takes.

That's a completely seperate thought though.

In the grand scheme of things, it should be acknowledged, not ignored, though.

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Keebler
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-

Jennie, you wrote: " . . . While time is money, it can also be donated, to a reasonable degree, without having much of an impact on profit. . . ." end quote.

------------------------------

Regarding asking doctors to donate their time, I imagine they do plenty of that already. And, I maintain they should have a right to privacy around that (whether they donate or not) although, we can see many who donate hours of their time in many ways.

While fees are high, all operating expenses must be taken into account. That can be enormous and includes: rent, property insurance, health insurance for employees, salary for employees, utilities, college loans, professional fees, malpractice insurance, their own family home and family members' needs, their futures, etc.

We cannot know all the expenses they are responsible for covering - and that is a private matter.

We cannot assume that because office visits are higher than your 10 minute appointment with a doc-in-the-box that they are over the top. Expenses must also be considered.

Yes, it is sad that many don't get the care. That is why we hope more doctors will be learning about TBD.

In the meantime, I have learned over the years how to find out if someone "is in the position to offer sliding fee scales services"

Simply ask that way. "Are they in the position . . . at this time ?" . . . "are there any sliding-fee scales programs?" . . . "What books or articles would the doctor recommend for those unable to locate a doctor? " . . . "Are there other doctors you know of you may have sliding-fee scales programs?"

By asking in that manner, it takes some pressure off everyone.

Some doctors may already cut their fees way back for a certain number of patients and they can only absorb so much.

Just be being in practice, seeing this classification of patient, these doctors put their futures - and their livelihoods on line every day under a cloud of adversity.

Many give what they can - but not all are in such a position to donate their services. And, when so, there are certain rules that must be followed in that regard.

Best of luck in finding a good doctor and one who is on your insurance plan. It is a challenge for everyone, patients and doctors, alike. No doubt about that. We all hope for improved access to treatment, patients and doctors, alike.

I also would like to see some philanthropic organizations take note and set up some TBD grant programs in every state.

-

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lymednva
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Keebler said:

quote:
I also would like to see some philanthropic organizations take note and set up some TBD grant programs in every state.

I think this is an excellent idea! [Big Grin]

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Lymednva

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Watertiger
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How about the pharmaceutical companies helping out too. Many of them help people who can't afford medications for things like diabetes and blood pressure issues - why not anti-biotics for Lyme?
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METALLlC BLUE
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This is already done extensively.

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I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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docjen
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I just want to weigh in here on this issue....

I saw an internist (not LLMD) for several years who did not participate in insurance for lots of very practical and reasonable reasons which make perfect sense. However, she always went out of her way to minimize cost for me when possible understanding that I was paying out of pocket, and also helped faciliatate my own billing of my insurance for medical costs incurred (ie. would give me a copy of a claim form already filled out with necessary codes,etc, when I paid her).

The LLMDs that I have seen that are not participating in insurance...again for reasons which I completely understand, have done none of these things. In fact, some of the office visit costs are outrageous. Yes...I understand that lyme is complicated and can require long office visits. However, my feeling is that the savings the doc realizes when not participating in insurance (and it is substantial, ie. no need for billing staff, higher "reimbursement" when not limited by insurance rates) should at least partially be passed on to the patient, and the fact that patients are paying out of pocket should be considered.

Just my thoughts....

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jjeennnniiee
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Hi Keebler,

I'd certainly like to think more doctors than not donate some of their time.

When you give, it will, always, be returned to you, in some way, although maybe not in the same way, but giving is a part of receiving.

That's exactly why I run my local support group, not to mention I thoroughly enjoy helping others.

I guess, I've just never heard much about any LLMDs doing it very much for those less fortunate, who have lyme, so they can actually afford to see them.

I realize why their fees are high, especially when they have to consider their operating expenses, some of which can be big.

I'm sure any LLMDs malpractice insurance is quite expensive too.

I guess, I just feel like they could give more than what they actually do, if they really wanted to.

That's a great idea to inquire about not just their, but any doctor's, willingness to provide their services via a sliding fee scale!

You really never know, unless you just ask, and it certainly doesn't cost anything, so it sure can't hurt.

Thank you very much for the suggestion!

I realize, some doctors cut their fees and can only absorb so much loss of payment for their time.

Again, I guess, I've just never heard much about any LLMDs doing it very much for those less fortunate, who have lyme, so they can actually afford to see them.

I don't even know of one, although I'd like someone, who does, to let me know, not just for myself, if needed, but especially for others I know, who could benefit from it.

I agree, LLMDs take many risks and they're much higher than the average doctor.

As a way to reduce them is a big reason why they don't take insurance, which I understand.

I relize, they can only give what and when they can, as well as must follow certain rules.

It just makes me sad to hear about those, who are needlessly suffering alot from having lyme, only because they can't afford to see a LLMD, especially when they have no or very little quality of life, or are dying.

It concerns me too, especially when I think about what would happen to me, if I ended up in the same position, and with lyme, we all know, anything is possible, at any given moment.

Thank you very much for the good luck wish I'll find a doctor, who will take my insurance!

Actually, right now, I have a great LLMD and even though they don't take my insurance, all I have to do is file for reimbursement.

You're right, it is a challenge for patients and doctors, especially doctors who are in private practice and aren't providers in any or only a few insurance plans.

I'm just saying, I truly wish more LLMDs would help more of those with lyme, who are less fortunate, by making their fees more affordable, so they can get the treatment they need, but can't otherwise.

I just think, there is more opportunity for them to do that than what they're making available now.

We're only given one life.

Once it's taken away, we can never get it back.

In all aspects of life, not just lyme, if more people learned to give more, then the world would be a much better place.

I believe, what we do on earth determines our eternal existence too.

Everyone can give something and even if it doesn't seem like much to them, it can end up meaning so much more to whoever they give it to.

Many can give a lot more than what they do also, if only they would follow through.

I'm not trying to force anyone to agree with me.

Basically, I'm just thinking out loud, speaking from my heart.

Love, Light, & Health,
Jennie

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My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Lymednva,

I'll vote for that too!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Watertiger,

I agree!

If you do a little research, you will find that some of them already do.

In the future, I do hope even more of them will!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Metallic Blue,

I agree, it is, although I would like to see more of it!

I think it's hard to sift through all of it to find what you're looking for though.

Hopefully, as time passes, that part will get easier though!

Love, Light, & Health,
Jennie

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My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Docjen,

That's great you found an internist who helped you so much!

That's certainly rare, thesedays!

I think, if LLMDs aren't going to take insurance, then they, at the very least, should be as helpful, as they possibly can, toward ensuring you get reimbursed by your insurance company for whatever you pay them for their services also.

I think, it would be nice too to see their cost savings passed on to patients, as well as have them take into consideration you're paying out-of-pocket, if you are.

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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bettyg
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...

my 2 cents worth; that is why it is important to touch base with SUPPORT GROUP LEADERS IN YOUR AREA OF EACH STATE!


they hear and are told many things that we with llmd lists are not! [Wink]

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jjeennnniiee
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Hey Betty,

I've got a twister for ya...

What do you do if YOU are the support group leader for the NEW group in your area, because there was NOT one and you do NOT know very much????? [lol]

I'm just kidding around with ya! [Big Grin]

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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TerryK
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My LLMD's office does not take insurance but they are very helpful in trying to facilitate insurance payment for me. They have also worked very heard to try to get some drugs approved for me when the insurance company denied them.

In the 2 years I've been seeing them, they've had to intervene 8 or 9 X's with the insurance company. ugh!! Sometimes repeatedly to get the approval of one drug.

Terry

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jjeennnniiee
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Hi TerryK,

That's great to hear, even though you've had to endure some issues, they've been very willing to help you with that!

I must say mine has helped me to get a couple of prescriptions approved also, which I'm grateful for!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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slappy2779
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It's pretty plain and simple. If you haven't seen Siko yet, I highly reccomend it. Doctors here in the states make way more than doctors in other countries, with far more advanced treatments for things like cancer. And, those doctors across the pond tend to still do very well for themselves.

Hospitals in the U.K. actually give you money back if you had to take a taxi to or from the hospital.

Quite frankly, and I'm not putting down the good doctors out there but, there are alot of doctors who are doctors simply so they can drive a lexis.

The hippochratic oath means absolutely nothing here in the states. IF it did, then we wouldn't be having the problem we're having with Lyme.

We're so obsessed with the "American Dream" we forget our neighbors. Jesus said, the greatest commandment is this "To love the Lord thy God with all your heart mind and soul, and the second is like unto it," (meaning you can't do the first without doing the second,) "to love your NEIGHBOR as you would yourself, upon these do ALL the commandments hang."

Sorry for the rant, [Frown] been really mistreated by doctors for the past three years I've been trying to get treatment for something that is staring them in the face [hi] . And, they're only concern is whether or not they're going to get paid, and if they actually treat me, they'll get blackballed as well and no longer do they get to drive their nice cars.

So they'd rather doom me to driving a stinking electric wheelchair down the street worrying how I'm going to take care of my wife and soon to come baby [bonk] , while they continue to drive Lexus' and vacation in the Katskills [toilet] .

This is a really sore subject for me sorry. [Frown]

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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jjeennnniiee
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Hi Slappy2779,

Thank you very much for sharing your thoughts, as well as story!

I'm so sorry to hear about everything you've been and still are going through!

Bless your heart!

I've actually seen the Sicko movie by Michael Moore twice now.

I had to watch it two times, just to absorb everything.

Part of it was due to the cognitive issues I have from having lyme disease.

The other part was simply because it was so interesting from an eye-opening standpoint.

I certainly can't disagree with what you've said, at all.

I believe there are some doctors like that, although not all of them are.

You're the type of person who I think about, regarding my post and replies.

You have the answers you need to get well, but you can't get the help you need.

You don't have enough money to see the right doctor and the right doctor is unwilling to help you otherwise.

It's a shame it has to be that way!

It really makes me sad!

It truly breaks my heart!

I sincerely wish there was someone, anyone, especially one who has the ability, who would, out of love, like you said, for their neighbor, brother in Christ, give you the help you need to get well!!!

Unfortunately, I don't have the answers.

I really wish I did!

I would certainly help you if I could, but I'm in a very tough situation now too, just trying to survive!

Stay strong and keep fighting, my friend!

I will keep you in my thoughts and prayers!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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slappy2779
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Thanks Jennie, I really appreciate it. That's why I've been fighting so hard to get this bill into Congress. As far as I see it, it's my only hope of getting some sort of treatment.

And I know not all doctors are like that, that's why I excluded the good ones from that rant.

Personally, I feel if doctors didn't get paid as much as they do, we'd get more of the doctors who want to be doctors to actually help people, and less who want the big yacht.

Heck, I don't think they realize how they fight so hard for their "practice" without even realizing where that word came from. Doctors who made huge strides in the past when medicine was first starting out had to actually "practice" on people, often not making any money whatsoever.

The only thing that drove them to continue was the desire to help their fellow man. Interesting isn't it. Fighting so hard in the name of a word they have no understanding of it's roots.

That's ok though, I've decided to sue my doctor and the hospital I was in. If money is the only thing they care about, then that is where I am going to hurt them. Hopefully I'll find a lawyer who charges only if they win.

Besides, IF (and big IF) I can win, it will strike a huge blow for Lyme activism. Because, if I can get a jury of my peers to acknowledge I not only have but require the proper treatments, then we'll have it in the law books.

And that means more doctors and health insurance companies will be more "compliant" [Big Grin] when it comes to treatment, if only out of fear of losing their oh so precious money [Eek!] [Big Grin] .

I am not going down without a fight.

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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JKMMC09
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I've heard of several LLMDs that do this for patients who cannot afford them.....I think all you have to do is ask.
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jjeennnniiee
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Hi Slappy2779,

You're quite welcome!

That's sad, but I understand.

I hope it works out the way you want it to!

I agree, not all doctors are like that!

I suppose, it is possible, by paying doctors less, it could lead to ones more helpful.

The Sicko movie showed some of that.

It could lead to a shortage though, which we don't want either!

I agree, some doctors probably don't know what the word "practice" really means and for those that do, some of them are probably just pretending not to.

Yes, if doctors thesedays had to really "practice", then there would probably be a lot less of them!

That is interesting about doctors and the word "practice"!

I didn't know all that, so thanks for teaching me something new, which makes sense, now that I've thought about it that way!

I wish you the very best with your legal pursuits!

It could, most likely, be a hard road, but payoff, well, in the end, not just for you, but for the whole lyme community!

I'd certainly like to see more doctors and insurance companies much more "compliant" too, for any reason, within reason, of course!

A desire to keep fighting is a great attitude to have!

Hold onto your faith and strength!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi JKMMC09,

If that is true, then can you provide me with their names?

Or provide me with the names of those who can?

I'm serious!

I posted this thread to get that exact information.

People are saying it's true, yet no one has been able to provide me with any names.

I'd really like to know for others, who need it now, as well as myself, who might need it later!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Tracy9
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quote:
Originally posted by docjen:
I just want to weigh in here on this issue....

I saw an internist (not LLMD) for several years who did not participate in insurance for lots of very practical and reasonable reasons which make perfect sense. However, she always went out of her way to minimize cost for me when possible understanding that I was paying out of pocket, and also helped faciliatate my own billing of my insurance for medical costs incurred (ie. would give me a copy of a claim form already filled out with necessary codes,etc, when I paid her).


My LLD gives me a filled out insurance claim form at the end of every visit.

He tries to minimize costs by working in any way he can with my Primary Care Doctor so I don't need to see/pay him any more than necessary.

He offers lower cost telephone appts/check ins whenever possible.

He always checks in with me about cost and reviews ways to minimize it at my appts.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Tracy9
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Jennie said:

"I'm just saying, I truly wish more LLMDs would help more of those with lyme, who are less fortunate, by making their fees more affordable, so they can get the treatment they need, but can't otherwise.

I just think, there is more opportunity for them to do that than what they're making available now."

Jennie,

I think that this information is highly personal and somewhat confidential even. Although I completely agree with you that they should all donate some of their time, publishing their names would just lead to an unmanageable influx of free patients.

No matter how much time all the LLDs out there donate, it won't be enough to meet the needs. As we all know, our health care system needs to be completely overhauled.

I agree with your point, but I also feel it is beyond our position to fairly judge how much any one individual can or cannot give for free.

We dont' know, and we won't know how much of their time they donate. I'm sure they ALL do some. But that is their private information, and to try and share or list names of those who do might unfairly lead to them having to turn away more and more patients.

By the way, anyone who can survive and pay for medical school, malpractice insurance, be on call round the clock, and have to make life saving decisions on a daily basis DESERVES to drive a Lexus more than anyone I know.

You can make plenty of money in the business world if you want to drive a Lexus. It takes a lot more than that to be a doctor.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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jjeennnniiee
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Hi Tracy,

I think that's wonderful!

My LLMD does those same things for me too, as well as other patients, I'm sure!

I believe most of them are willing to work with you on those aspects, in anyway they can, which is a blessing, indeed!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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cantgiveupyet
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This is such a tough subject for me. I lost a very good insurance plan when i got lymed. went on cobra thankful had saved enough when working to afford it.

but now im on medicare and i think that llmd should offer some kind of partial discount since medicare patients cannot submit to insurance for ANY kind of reimbursement.

this goes for the non insured too. Even if it was just 25.00 that would be so helpful to me right now.

--------------------
"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

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Tincup
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JJ said..

"I'm just saying, I truly wish more LLMDs would help more of those with lyme, who are less fortunate, by making their fees more affordable, so they can get the treatment they need, but can't otherwise. I just think, there is more opportunity for them to do that than what they're making available now."

`````````````````````````````````````````````````

I only wish you knew what I know. You'd be amazed.

I judge folks by what is in their heart. LLMD or not.. if I don't feel they are good people... and have a good heart... I won't deal with them. That said...

I have found LLMD's to be the most giving, sharing group of humans on the planet.

Because patients may not see it when they are in an office for an appointment... does NOT mean they aren't giving. But they don't advertise it.

I've seen them do incredible things for numerous people over the years... way above and beyond what doctors should do.

I don't know how many calls I've made to LLMD's I didn't even know years ago to find patients help. I would imagine I've made hundreds and hundreds of these contacts. NEVER once did a LLMD say no. Never have I seen a hardship case go without getting help.

If I had an entire year to tell you all the things I've known them to do for others behind the scenes.... I wouldn't have enough time to list them all.

I'm going to tell you a short story... no names... to give you an idea of some of the things I've known they do.

An older patient, no family, no relatives. VERY VERY sick.. bed-ridden. No one to care for them... no money. The LLMD not only took them as a patient... worked with them for years... fought to get them treatment.. and paid for their meds... but..

After their long days working and... while on their own family time .... they would go sit with said patient at a nursing home for the disabled.... and read to them so they would have some company.. and so they would know someone cares.

I cry when I think about it.

And keep in mind... no child I've ever heard about in the past twenty plus years.... has gone without a doctor or medicines if there was a LLMD around.

I know many of us have donated to the legal funds of our LLMD's when they have had court hearings... but who do you think kicks in BIG chunks of money to help them?

I could go on and on... but I won't.

You'd just have to know that what you see on the surface isn't all there is when it comes to our LLMD's.

````````````````````````````````````````````````

And BTW-

If you ate a hot dog and got sick from eating it... whose fault would that be?

Yours? The one selling the hot dog? The one who made the hot dog? Or the pig it came from?

Before complaining about the fees.... think about who REALLY is to blame for the way things are right now.

[Big Grin]

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

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METALLlC BLUE
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If you wanted names all along, I could have given you that. E-mail me as sbauzys@comcast.net

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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Tincup
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Please note-

We try not to share names as it will be abused and we will all loose. It has happened before.

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

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jjeennnniiee
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Hi Tracy,

The information I'm referring to is not so personal and/or confidential it can't be compiled much the same way LLMD contact information is now.

That information isn't highly publicized, thus it shouldn't be either.

Both should be protected and withheld in the same manner to try to ensure, as much as possible, whoever is seeking information has no intentions of using it to harm anyone, especially LLMDs.

I'm simply suggesting a delineation of our current list of LLMDs in such a way those who have agreed to donate some of their time to help the less fortunate are more known.

That would not lead to any LLMDs experiencing an unmanageable influx of free patients, when they are free to exercise sole discretion over how much time they choose to donate.

While they could never donate enough to help everyone, who is less fortunate, when they choose to help some of them, it's much better than them choosing to not help any of them.

Most charities strive to maximize their available funds and in turn, utilize them, as efficiently as possible, to serve the needs of as many people as they can with what they have.

There would be very few, if any, of them, should they choose to operate under the sole condition of only if they have enough funds to meet the needs of everyone.

It is not our right to judge how much time a LLMD must donate though, even if at a reduced rate.

They should be free to set their own limits, but at least, choose to do something, because that's better than nothing.

It's very hard for just one LLMD to change the situation, but strength lies in numbers, thus if each one would take the initiative to donate a small portion, as they see fit, together they could easily make a substantially positive impact.

Clearly knowing the ones who do donate some of their time to the less fortunate would provide a clear path for them to get the help they need, but would not get otherwise.

They would have a sense of direction, by knowing who to contact, instead of searching endlessly, only to meet one dead end after another, which leads them to feel frustrated and hopeless.

If an LLMD is doing their part to help the less fortunate, neither they nor them should feel it's unfair, if they have to turn them away.

Even if they might have to wait awhile, such as by being put on a waiting list, that will instill hope within them they're longing for, just knowing a LLMD, at some point, will ensure they get the help they need, but can't get elsewhere.

It's not up to anyone to decide what anyone, including a doctor, should spend their well-earned money on.

If you make an honest living, then you deserve to spend your earnings however you want, within reason, of course.

Professions are choices though, where some people choose to trade wages for personal satisfaction and vice versa.

One has to realize each person brings a different set of skills to the table and a college education doesn't guarantee a job though.

Ultimately, wherever you choose to express yourself in the working world is a personal choice you are free to make, however you see fit.

At the same time though, you make the choice to assume all of the responsibilities of your job, some of which you may not like.

It would be nice to see those who have chosen the LLMD profession come together for the common good of those they serve, who are less fortunate, and extend some real effort helping them, by realzing they won't get the help they need otherwise.

One small act of kindness from one person is capable of changing a few lives, while the same from more will lead to much more.

Our society tends to turn a deaf ear to the less fortunate, forcing them to have to unnecessairly fend for themselves, which is an injustice you have to experience firsthand, in order to fully comprehend it.

If more of the more fortunate contributed in some small way to those less fortunate, then there would be much less of the less fortunate.

Many of them could become productive members of society, as a result, which would help many in alot of ways.

I wholeheartedly agree, without a doubt, our healthcare system needs to be completely overhauled!!!

Let's just hope and pray we get a president who can successfully do that for us!!!

Having been a healthcare administration major in college and minoring in gerontology and nutrition, I've learned a great deal about the inner workings of all sorts of healthcare organizations.

I don't profess to know exactly how to fix it, but having studied the national healthcare system in other countries, I am doubtful, if we choose to adopt it, unless it's devised appropriately and accordingly, it will solve our problems in the healthcare industry.

Love, Light, & Health,
Jennie

[ 24. June 2008, 02:05 AM: Message edited by: jjeennnniiee ]

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Cantgiveupyet,

After reading your story, I can certainly understand why it's such a tough subject for you!

Bless your heart!

I'm glad you had COBRA, but sorry you have Medicare now!

I'm looking at the same thing, although hopefully, three years down the road, from now.

I think it would be nice too, if they offered some kind of discount to Medicare, as well as non-insured, patients!

Unfortunately, I really don't see that happening anytime soon though, but you never know.

When the new ISDA guidelines come out, maybe they'll decide to start taking insurance?

Who knows?

Until then, I guess we just have to keep getting by the best we can!

Sorry to say, but that's the only answer I've been able to come up with, right now, anyway!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Metallic Blue,

Thanks!

Will do!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Tincup,

I'm very familiar with the reasons why names are not always shared here.

I'm even reluctant, at times, to share who my own LLMD is.

At the same time though, how can a person be helped, if they're refused to be given the information they need?

I don't think you can judge everyone, based upon what's happened before.

First of all, I've been a member here since Sept. '05.

It's in my signature line.

Second, I am a support group leader for my area.

My name and group information is actually even listed here on Lymenet.

Please don't assume I will abuse the information, just because others have.

I've been around enough to realize, I stand alot to lose too, along with everyone else, if I do.

Even if I didn't care about others losing, which by my posts, you should be able to see that's certainly not the case with me, they why would I even cause my own self to lose?

As a support group leader, when I'm asked for the type of information I'm requesting, if I don't have it, then how can I possibly help someone who contacts me needing it?

By severely resticting my access to it, especially without gathering some background information on me, doesn't seem fair to me.

I'm far from a troll and/or untrustworthy.

I have lyme and am trying to get well, just like many others here, including yourself.

In the meantime, all I want to do is use it to help others, possibly even myself.

Without it, I can't, but with it, I can.

I help people here, when I can.

All I ask for is the same, in return.

If this board is truly about helping people, then I really wish someone would help me.

I promise you can trust me.

I don't know what else to say to help you see that.

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Robin123
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quote:
Originally posted by Keebler:
-

I also would like to see some philanthropic organizations take note and set up some TBD grant programs in every state.

-

I like this quote too! Has anyone checked into this idea? We need programs for folks who do not have the money to pay for doctor visits and some care.
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shazdancer
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The LDA already has some assistance for children in need, called the LymeAid4Kids fund.
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slappy2779
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I understand fully that there are LLMD's out there doing good. But, unless you're on the other side of the fence like me, it's hard for you to understand.

I'm not putting down the good doctors. And I am not saying I have Lexus envy, what I am saying is,the heart of the matter. A person should NOT become a doctor soley for the reason of making money.

But, facts are facts, and in our country and society that is why a majority of doctors become doctors. People keep talking about malpractice protection, and all these other things trying to make excuses for doctors. Fact of the matter is, like I said, there are countries where doctors make WAY less than doctors here, and they deal with the same things U.S. doctors deal with.

And personally, I don't want to go to a doctor who is worried about malpractice. I know it sounds harsh, but, being a doctor is a high calling. I am putting my life in his/her hands, and that's serious. Serious enough I should expect them to know what they are doing, and they are taking it just as seriously.

The reason medicines cost so much is for nothing more than companies trying to make money. In the movie Sicko, a woman, whose inhaler medicine she's been taking from 9/11, here has put her out of her house and forced her to move in with her children. In Cuba cost her about .49 cents.

No matter how you slice it, doctors are overpaid. And it has bred some doctors who no longer care about the patient.

For a moment, just a moment, imagine what it would be like to not be able to work because of your lyme. (not a far stretch for some I know). Now imagine you can't afford any insurance other than Medicaid.

You have no help from family because they're already stretched far enough as it is since your Mother is fighting breast cancer.

And medicaid won't give you a referral for a doctor in N.Y. city who specializes in Lyme, because it's not his "official" specialty, and there's someone with his official specialty in your area. But, that person knows nothing about lyme.

Imagine, they don't consider Lyme specialists a speciality. And, they won't pay for treatment of lyme disease.

Your doctor given to you by medicaid, does not even believe in Chronic Lyme, even when the evidence stares him in the face. He simply makes up excuses. Why? Because if he actually used his logic and did the right thing, Medicaid would drop him, and he no longer would be getting paid for all those patients that come and see him.

Imagine going to a hospital, that won't even get your prior medical info from when you were diagnosed with Lyme, and is willing to run all sorts of needles tests, just to avoid diagnosing Lyme. Going so far as to call it Conversion Disorder.

Being very intelligent, and having the medical community treat you like an idiot. Once, being a writer and speaker, and now struggling to finsish a sentence.

Now imagine, it's been three years and you are stuck in a wheelchair. You are getting worse and worse day by day. Your wife is expecting a baby. She has to work just so you can get by. You had to leave the school you were going to because it wasn't wheelchair accessible.

You struggle month after month, just hoping you have the 125.00 to pay for the next trimester of online school. And praying you can finsish before the baby is born. MOre often than not putting it off so you can pay rent so you have a roof over your head.

And going from someone who the summer before your relapse, worked two full time jobs just to pay for the school you longer can attend, to someone who can barely get out of bed in the morning.

Who is the man of the house, and can't even provide for his family other than his stupid disability checks.

And you are constantly living with the fear that this disease is going to kill you, and leave your wife and soon to be child without a husband and father. And there is nothing you can do about it, because without insurance you can't even afford the doctor visit, let alone the medication.

And all this because the doctors that should be helping you, the doctors who took the hippochratic oath, WON'T help you. And the doctors that can help you, you can't afford.

And now, people just look at you and say, "Well your not doing enough, you just need to make more money then, it's your fault."

Well it's not my fault I am sick, it's not my fault I am in a wheelchair, it's not my fault I can barely make it through the day, it's not my fault more often than not I don't even have enough energy to sleep with my wife.

To sit there and make excuses as to why it can't be done, we should be trying to find a way it can be done. That's what loving your neighbor as yourself means.

If you were in that situation, you would want someone to help you out. If it was your family, your mother, your son, your daughter, your father, you would bend over backwards to help.

I don't care what anyone says, its not fair at all and something needs to be done about it.

[ 24. June 2008, 12:44 PM: Message edited by: slappy2779 ]

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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heiwalove
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i don't have any words after reading your post, slappy.

my heart breaks for you. and i agree with you 1000%.
*

you can't tap blood from a rock, people. some (many) folks simply CANNOT afford to see an LLMD, or to properly treat their lyme disease. it's a crime and a travesty and just because YOU have the resources to make it work (maybe you have savings, or family help, or were able to sell belongings, or take a second mortgage out on your home. i'm not saying you didn't have to sacrifice -- but the point is, you were/are ABLE to make those sacrifices, however difficult they may be), not everyone with lyme is so lucky.

--------------------
http://www.myspace.com/violinexplosion

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Tincup
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Slappy...

Can you email me the name of the doctor you've been to... and the one you want to go to?

Thanks!

AfterTheBite@toad.net

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

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jjeennnniiee
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Hi Tincup,

I wish I knew what you know too!

Maybe I'd feel alot different then.

Perhaps, in time, I will.

I judge people the same way too, thus I understand exactly what you're saying!

I don't disagree with anything you said about LLMDs.

I realize, they do have to deal with a lot more than your average doctor.

Thank you for sharing that information about them!

It makes me feel good to know that!

I'm glad to hear you've been a big help too!

I'm sure your efforts don't go unappreciated!

What a sad story, indeed!

It's definitely a tear jerker!

Thank you for sharing it with me!

It really touched my heart!

I agree, there's more to LLMDs than what's seen on the surface.

I'd like to think no one goes without the help of an LLMD, when needed, but there are some that do, which makes me sad.

I'm not saying LLMDs aren't sticking their neck out there for us, in more ways than one, but I do tend to think the less fortunate get pushed aside for those who are more fortunate.

I hope he doesn't mind me saying, but Slappy2779's case is a perfect example!

I like your hot dog analogy.

I agree, it's not any LLMD's fault for the position they're in.

I'm just saying, I'd like to see the more and less fortunate, alike, be able to get the help of an LLMD.

The only way that's ever going to change is if the LLMDs come together to ensure that happens!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Robin123,

I like it too!

I don't know if anyone has checked into it or not though.

If so, I'd definitely like to know what they found out.

If not, I'd certainly be willing to do it, if someone could just tell me how to go about it.

I agree, we need programs for the less fortunate.

I'm more than willing to try to help make that happen, if possible.

If donations can be made to all other types of funds for lyme disease, then why not to some to help the less fortunate????

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Shazdancer,

That's great to know!

Thanks for mentioning it!

I could be wrong, thus if so, please feel free to correct me, but I do tend to think more adults, than children, have lyme and need help.

For the most part, when children get sick, they can depend on their parents for support, but when adults do, who do they depend on, if they can't work?

That's if their parents don't have lyme too, of course, which definitely poses a much bigger delimma.

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Slappy2779,

I'm so glad you've reached out and let others know more about your problem!

I was hoping you would!

You're just one, of many, I think about, when I refer to the less fortunate.

As I said before, the situation you're in truly breaks my heart!

I don't have any answers for you, although I really wish I did!

I hope and pray someone, somewhere, somehow, will eventually be able to help you!

In the meantime, if I can think of how to help you or anyone else, having such a terrible issue, I will!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Heiwalove,

I definitely feel the same as you do about him!

I, wholeheartedly, agree with the rest of what you said, which you said quite well, indeed!

I don't have anything to add to it, except those more fortunate really need to stop and think about what it's truly like for those less fortunate!

Maybe what you said will help with that!

I sure hope so!

It really drove the point home, per say, with me, for sure!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Tincup,

Bless you for coming forth and being so willing to try to help him!

I hope and pray you can!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Robin123
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I know there are a lot of really wealthy people in this world, with a tremendous amount of money. Come on - some with billions.

I think it just takes awareness and the willingness to want to use some of that money to set up TBD grant funds to get Lyme patients to doctors and get some care coverage.

Of course it's an insurance substitute. If insurance was doing its coverage job, we wouldn't have this problem.

Here's an idea - just throwing it out - a letter sent to everyone listed in the world's top wealthiest, asking for some assistance for ill Lyme patients.

And whatever creative ideas we could dream up about such an arrangement.

I know it's nutty, but I know money is out there.

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jjeennnniiee
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Hi Robin,

I agree, there are people out there who are fortunate enough to help, but they have to be willing to do it!

One problem is not a lot of people know very much, if anything, about lyme, like cancer, for example, which often has alot more help available, because more people know more about it.

I'm not blaming or bashing anyone, as it's only one issue, of many, which comes from having lyme, where there just aren't many, if any, answers.

I can't say it's any one person's fault, in particular, but the political climate, which surrounds lyme, sure doesn't help, not to mention the inappropriate IDSA guidelines.

I hope and pray, when the guidelines are rewritten, sooner than later, I hope, it will be a huge step in the right direction, for those of us who are suffering from lyme!!!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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dudeplanet
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I have been to the llmd twice and cannot afford to keep putting office visits, supplements on my credit card. Testing alone was going to be well over $2,000.00. I have no choice but to keep searching to find a doctor who takes my insurance to keep on supplying me with antibx. I am caught in between thinking they LLMD [Frown] are doing the right thing by me and thinking that I am $$$$$$ in their eyes. I wonder why they don't take insurance and then they have their own supplements and separate testing kits that they sell.
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jjeennnniiee
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Hi Dudeplanet,

I'm so sorry to hear about your financial issues!

You are not alone!

Taking insurance vs. selling supplements and test kits is totally different for them.

When they take insurance, they are forced to deal with the highly contested controversy surrounding lyme disease, to a much larger degree.

When they sell those things, it doesn't raise their risk for unnecessary scrutiny, jeopardize their license and practice, and other issues of that nature, like taking insurance does.

When the IDSA guidelines are eventually changed, maybe that will positively change the issues they have with taking insurance, thus more of them will accept it.

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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jjeennnniiee
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Hi Keebler,

Thank you so much for posting a much better reply than I did to Dudeplanet's post!

You did an awesome job!

I just wasn't thinking in the same direction nor near as deep as you.

I focused more on the insurance issue, but you certainly provided a lot of very helpful and valid information about some other issues of much concern and importance.

I hope you've been able to help them alot!

I'm definitely still learning, thus I'm working on knowing more and more each day, and you definitely taught me some new things too! [Smile]

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Keebler
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-

I actually deleted it about the time you were posting.

I can't think of how to say what I want to - can never get it just right so I just zapped it.

-

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jjeennnniiee
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Hi Keebler,

I think it was a great reply to his post!

I think what you said was right and very well said!

I hope you reconsider and post another reply to him again!!!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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slappy2779
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Thank you for your guys emotional support. I appreciate it, and Jennie no I don't mind you saying that.

The reason I put that up there, was simply because I wanted eveyone to see not everyone gets the help they need.

I don't want to shame anyone, or make anyone feel bad or like they're not doing what they're supposed to. I don't know what I would be doing without this site.

My story, along with so many others, is just an example of how important this bill is. Fact of the matter is, it shouldn't be all on the LLMD's shoulders. They shouldn't have to pick up the slack for other greedy doctors and insurance companies.

That's what I want to see changed. I want to see medical insurance do what they lied to us about what it's supposed to do. I say lie because medical insurance was originally started to make money, not to help those less fortunate recieve medical care.

It's sad when third world countries have better medical care than a world power. [loco]

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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jjeennnniiee
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Hi Slappy2779,

You're quite welcome!

I'm glad you didn't!

I'm glad you spoke up too!

I realize that and think everybody else does also!

Yes, it's very important, especially for people like you!

I agree, nobody should have to pay for those who are wrong!

I'd like to see it changed too!

You're right, it is a lie!

Yes, it is very sad, indeed!

Love, Light, & Health,
Jennie

P.S. Has Tincup been able to help you? I sure hope so!

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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slappy2779
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I got an email back, but there's a thunderstorm in her area so she had to shut down her comp, she said she'd email me back later.

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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jjeennnniiee
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Hi Slappy2779,

I'm glad to hear you got an email from her, but sorry to hear she's getting storms in her area, so she had to shut down her computer.

I'm sure she'll email you back, as soon as she can, though.

I'm anxious to hear if she's going to be able to help you or not!

From what's she's said, I think she can.

Please let me know how it turns out!

I'll be thinking of you hoping and praying she is able to help you finally get the help you really need!

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Tracy9
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You know, this really brings home the point of WHY isn't there some more centralized fund raising for covering uncovered Lyme Disease medical help?

Is this something the Lyme Disease Association or Turn the Corner Foundation could spearhead?

We expend so much energy here talking about how we can't access treatment, why can't some of us or someone get a fund going to help us, just like LymeAid 4 kids does??????

Ideas?????

How can we do this???

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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slappy2779
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That's a good idea Tracy. I don't know how one would go about setting somthing like that up though. If anyone has any ideas, let us know.

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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slappy2779
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I was just thinking, maybe if enough LLMD's can put some money together, they can get at least maybe a head start on a grant. I'm going to try and look up info on creating a non-profit organization.

If anyone has any info that would be useful that would be great to.

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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Tracy9
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Instead of trying to reinvent the wheel, wouldn't our energy be better spent trying to work with the Lyme Disease Association, Turn the Corner Foundation, or ILADS to try and create some funds for this?

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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slappy2779
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That's if they're not already spread to thin. It's worth a shot, but if they simply can't do it, then we may just have to invent another wheel.

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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ICEiam
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I know for a fact there are LLMD's out there that are more than willing to and have helped many people who can't afford testing and care.

Just because they don't advertise doens't mean it isn't done.

Do you realize that like a Neuro, Gyn, Rhuemie, and all the other specialists LLMD's are listed as PCPs or Family practice?

They are highly specialized but not recognized as specialists. So the insurance companies pay them the lowest they can for sometimes 2 and 3 hours appointments.

No wonder they have you bill your insurance co. yourself. You get reembursed the amount your insurance co would have paid a GP.

When our LLMD's are recognised as specialists and paid by the insurance co accordingly, then I am sure many of them will accept insurance and medicare/medicaid.

Come on guys, give them a break and be thankful we have these doctors that are willing to risk everything to help people no other wonderful DUCK can or will help.

Look at what our dear Dr Jones is going through.

Just my two cents worth...............

HUGS,

--------------------
ICEY

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bettyg
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...

please read this carefully from DOC DAVE AKA STYMIE LYMIE; IT'S WHAT YOU ALL HAVE BEEN DISCUSSING ABOVE!!!!
******************************


bettyg
posted 26-06-2008 03:05 AM
-----------------------------

DOC DAVE,

glad you got to compare notes with kATAk.


if you get the chance read JENNIE...jennie with DOUBLE LETTERS FOR EACH LETER IN HER NAME!


why drs. cost so much, and insurance NOT paying etc. in MEDICAL

***************************

can you share any type of a progress report with all here on the special foundation you are trying to set up for those UNABLE TO AFFORD TO GO TO LLMDS ??
************************

this has been a hot topic lately here; any input would be great! thanks my "new KNEED" friend Dave!

Bettyg
****************************************

I HAVE USED ALL CAPS ETC. FOR EMPHASIS!! bg
****************************************


stymielymie
Frequent Contributor
Member # 10044
posted 26-06-2008 08:07 AM
--------------------------------------------------------------------------------


betty,

unforunately things have been put on hold for now
due to my knees and building the new house.


i will approach a charity tomorrow and see if we may be included in their handouts.


my community has a very strong charity and collects 50-100,000 in dollars each year.
******************************************


it is a logistical issue, as it is too difficult to start a charity,


and LYMENET AND LDA DOES NOT WANT TO SUPPORT IT; THEY WANT THE MONEY FOR THEMSELVES.


if you know pat smith well, maybe you can contact here for some advice, since she shunned me off.

it really needs to go thru them, LDA!!
**************************************


i also have a president of a large tech company that wants to get involved but we can't get started without someone to say "YES, THIS IS OUR CHARITY AND WE SUPORT IT 100%!"


it is for the need of lymies in need and without support from the lyme community my hands are tied.


betty, if you could help me find a LYME SPONSOR,
them maybe i could get the wheels rolling.



do you really "kneed me anyway" lol

docdave
***********************

so who want to help DOC DAVE on this? here's a person who has been working with me for about 1 year BEHIND the scenes in trying to help many of you who do NOT have the $$ to see llmds/treatments!!!!


i'm swamped helping daily here with my newbie package, sending out llmd names to 20-45 NEWBIES DAILY AND IT'S BEEN LIKE THIS FOR ABOUT 2 WEEKS STRAIGHT AND I'M TIRED! plus my answering all PMS that are sent to me.


the newbies are finding me BEFORE i get a chance to welcome them here when they see my name on seekign dr. forum!!!


dave's given you some info; now how about organizing to get A LYME SPONSOR!!! he has the $$ from many who are PHILANTHROPISTS!!

***************************************


now, let's work as a TEAM to get this started for so many of you needing it!!!! [group hug] [kiss]


--------------------------------------------------------------------------------
Posts: 1506 | From: banner elk,& southport,nc | Registered: Sep 2006 | IP: Logged

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slappy2779
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Bettyg,

Definately!, What is a Lyme Sponsor, and what do we need to do to get one? I am pretty good at writing letters, speaking, and research. Point me in the right direction. [Big Grin]

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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Tincup
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Might I suggest that if you post something.. try to do it by not kicking someone with information that is not true.

"LYMENET AND LDA DOES NOT WANT TO SUPPORT IT; THEY WANT THE MONEY FOR THEMSELVES. if you know pat smith well, maybe you can contact here for some advice, since she shunned me off. it really needs to go thru them, LDA!!"

1. Pat is busy. Last I spoke with her she had meetings in 5 different places (states) in 5 days. Anyone who writes to her gets the same sort of answer.. IF they get one.... which is...

Short and to the point. I've written 2 pages of explanation and discussed a variety of things.... and for all that effort...

The reply she sent me was a simple one word reply. ...

"no"

If I took that as being shunned off or took it negatively... it would be because I have NO clue what she does for all of us. It is because she is busy volunteering every waking moment for us 24/7.

2. The reason the LDA, ILADS, etc can not do this is because it is NOT in their by-laws and rules/regs of their organizations. Each organization is set up and given federal/state tax status and they have rules they MUST follow.

The LDA is for research and education. It was not set up years ago for paying LLMD's fees in court... supporting charity drives... etc. 96 or 98 percent.. figures close here... goes directly to research and support. No office building, no paid employees with benefits, no frills or thrills.

Saying they want to keep it to themselves is NOT fair when it goes to the purpose it was set up to do... and in a way that is much more efficient than most charities.

3. If the LDA ... which is all volunteer were able to accomadate every request everyone in the country made of them.. there wouldn't be enough people to handle all the details. It is kept afloat by Pat and some chronically ill patients who volunteer their time when they are well enough... and it does so much already that it couldn't do much more.

4. LymeNet is given a donation from the LDA to help keep it afloat. The rest comes from patients and supporters. It is also not set up to take on charity causes... as it is one itself.

`````````````````````````````````````````````````

That said...

If anyone wants to set up a fund, please do. But don't expect an all volunteer organization to jeopardize their own status by being involved in things they can't do... and stretch themselves so thin they can't do what they do to help you all.

Thanks!

[Big Grin]

[ 27. June 2008, 12:26 AM: Message edited by: Tincup ]

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

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Tincup
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"The information I'm referring to is not so personal and/or confidential it can't be compiled much the same way LLMD contact information is now."

Actually it is. Imagine this...

You are in a store and going through the check out line and the cashier says...

"We have a charity to support the Johns Hopkins research fund and would like to know if you will make a $5.00 donation to the cause?"

Imagine them saying that in front of a line full of people behind you that can hear you.

I don't know about you, but to me it is personal who I donate my time and money to. I also don't want to be pointed out because I chose not to donate to Hopkins when every spare nickel I've had for years goes to help Lyme patients... and other charities of my choice.

A LLMD should be afforded the same respect.

Plus.. I have never seen a LLMD who didn't donate to help others.... ever.

````````````````````````````````````````````````

"I'm simply suggesting a delineation of our current list of LLMDs in such a way those who have agreed to donate some of their time to help the less fortunate are more known."

Again I would say no. Who, when, where they chose to donate whatever they want or don't want is totally up to them... and they should not be put on a list... or on the spot.

````````````````````````````````````````````````

"That would not lead to any LLMDs experiencing an unmanageable influx of free patients, when they are free to exercise sole discretion over how much time they choose to donate."

Actually that is exactly what happens. Again, any time, money, etc that is donated by a LLMD should be their decision and theirs only.

````````````````````````````````````````````````

"While they could never donate enough to help everyone, who is less fortunate, when they choose to help some of them, it's much better than them choosing to not help any of them."

This is said with a tone implying that they don't donate. They do. They should not be pressured to do more. If that happens they will most likely have to start saying no to everyone. I would.

```````````````````````````````````````````````

"Most charities strive to maximize their available funds and in turn, utilize them, as efficiently as possible, to serve the needs of as many people as they can with what they have."

A doctors practice isn't the same as a charity organization.

`````````````````````````````````````````````````

"They should be free to set their own limits, but at least, choose to do something, because that's better than nothing."

Again this is assuming they aren't already doing more than their share. They are doing more than they should already.

`````````````````````````````````````````````````

"Clearly knowing the ones who do donate some of their time to the less fortunate would provide a clear path for them to get the help they need, but would not get otherwise."

Unfortunately, no matter how we slice it... there are going to be people who will not be able to go to a LLMD because they can't afford it... can't make the drive... etc. If a patient is unable to afford the cost... it is not the LLMD's fault. It is the ducks that got the patients in this spot to start with.

If a patient is in need, they should keep trying to they find help. We all need to keep pushing to make changes that will help us. It isn't easy, but that is the situation right now.

`````````````````````````````````````````````````

"It's not up to anyone to decide what anyone, including a doctor, should spend their well-earned money on. If you make an honest living, then you deserve to spend your earnings however you want, within reason, of course."

Exactly!

````````````````````````````````````````````````

"It would be nice to see those who have chosen the LLMD profession come together for the common good of those they serve, who are less fortunate, and extend some real effort helping them, by realzing they won't get the help they need otherwise."

They already do. Because someone may not hear all the things they do, doesn't mean they aren't being done. To make assumptions they don't isn't really fair to them.

``````````````````````````````````````````````````

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

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Tincup
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That said... whew...

Patients here have gotten together in the past to share the cost for a visit to a LLMD for patients who were unable to pay for one.

If anyone would like to take this on, please do. I am sure it would help.

[Big Grin]

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

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bettyg
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tincup,


thank you for your comments about setting up a charity, and other stuff you know about LDA happenings since they are a SMALL all-volunteer SICK LYME patient group!


you've given suggestions here for all who have been reading this post; dave has told of people has has lined up who will donate $$$.


i'm in NO position to spearhead this....
**************************************


i do have an idea i will send to another member to see if they might be able to find out info from someone who HAS established a CHARITY IF they get a chance to see this person!!! betty

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Tincup
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Well fiddle. I didn't respond to this one yet...

"Hi Tincup,... At the same time though, how can a person be helped, if they're refused to be given the information they need?"

If someone would like to contact a specific LLMD's office and ask if they have a sliding scale.. or special arrangements, they should.

`````````````````````````````````````````````````

"I don't think you can judge everyone, based upon what's happened before."

I am not trying to judge anyone... simply relaying what has happened in the past.

`````````````````````````````````````````````````

Please don't assume I will abuse the information, just because others have.

I never assumed you would.. sorry if you took it that way.

```````````````````````````````````````````````

By severely resticting my access to it, especially without gathering some background information on me, doesn't seem fair to me.

I am not restricting your access to that information. I simply think it is not a good idea to have a list of LLMD's for folks to contact who have helped others in the past. I think some patients need to do some things for themselves.

Example- I won't tell folks which insurance some doctors take... because sure as I do... they will go there and the office doesn't participate anymore.. then people get angry with me.

By giving someone the name of a LLMD over another.. and saying you have to pay for one and not the others... it will overload that LLMD... and if the LLMD can't do it.. the patient is going to lose faith in you and the LLMD... and it might just make the LLMD upset enough that no one gets a break.

Example- Years ago our local town decided to have a "ladies night" at the movies on Monday. All females paid only $1.00 to get in. It was wonderful! We sure appreciated it. BUT...

Men complained because they had to pay $2.00 to get in.

Rather than giving the men a break or deal... they decided no one got a deal anymore. Everyone then had to pay $2.00.

````````````````````````````````````````````````

"I'm far from a troll and/or untrustworthy. I have lyme and am trying to get well, just like many others here, including yourself."

I haven't seen anyone suggest you are a troll... especially me. I happen to think most of your posts are very kind and helpful.

````````````````````````````````````````````````

"In the meantime, all I want to do is use it to help others, possibly even myself. Without it, I can't, but with it, I can. I help people here, when I can. All I ask for is the same, in return."

If you would like some help with the fees... please call a LLMD of your choice and directly and ask them if they can help you. That is the same advise I would give to anyone who would need it.

````````````````````````````````````````````````

"If this board is truly about helping people, then I really wish someone would help me. I promise you can trust me. I don't know what else to say to help you see that."

I don't think anyone thinks you aren't trustworthy. Not at all.

And I am not even sure folks have a list of doctors who might be able to reduce their fees. I know I don't keep that kind of list... and I've kept lists for over 20 years... back when we didn't even have LLMDs.

I kept a list of who NOT to go to back then.... cause that was all we had. It was called the worst of the worst list.

Thankfully... because of the kindness of the few doctors who are working to help us... we still have the worst of the worst list.. but we do have a few LLMD's.

While going to your LLMD... can you try to educate a local doctor to work with them? Maybe that would help you and educate someone that can help others at the same time?

I hope that works for you! I really do!!!

[Big Grin]

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

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Tincup
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BettyG...

"i'm in NO position to spearhead this...."

Me neither. Like you booked full and can't take on one more project. plus it involves money and things I "don't do".

Hope someone can though.

Thanks for checking around.

[Big Grin]

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

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stymielymie
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tc:at least now i know why i she would not help,
and maybe my words were too strong.

what i need now is a lawyer that can help me establish a charity base for lymies in need.
it will be all volunteer and 100% of monies minus expenses will go to lymies in need.
all i want to do is help, and have the means,
i think to collect some monies.

i do not know the process and had a hard time just sending money to people in need over the last 2
years.
if someone could help me it would be greately
appreciated.

docdave
[confused]

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Tincup
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Suggestions..

Contact lawyers in your state and ask them who might be able to set up a charitable organization for you. Here is one site that may get you started.

http://www.lawyers.com/North-Carolina/browse-by-city-All.html?site=466&CMP=KNC-GAW

If they don't help or can't do it, then ask them to refer you to someone who can. They usually have a list of referrals.

And/or contact your local Elks Club, Lions, Moose, VFW, Red Cross, etc and ask who they have used to help them.

They don't need to be Lyme literate to help set up an organization. Plus... most Lyme literate volunteers are swamped with projects already... and are sick themselves and/or have sick family members..... so looking for someone to commit to something extra, within the community, well... it would be difficult to find someone I would think.

Before you approach an attorney you will need to get all information straight as to exactly what you goal is and how you plan to accomplish it. On paper is best. Then they can suggest what they think would work best for your situation.

You might also Google book keepers or accountants to see if they can assist you because the tax work, filing stuff, etc can be difficult if you are unfamiliar.

Keep in mind, it isn't an easy process and takes a good while to file and do all the paper work... so you need to prepare to stick with it once you get it going.

That is one of the reasons folks haven't just "done it" before.

And your work helping others has always been very special to so many. Thank you dear one... and keep up the good work!

Good luck!

[Big Grin]

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

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jjeennnniiee
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I started this post, never thinking it would become what it has.

Lately, I haven't replied to anymore posts nor do I feel like I will, in the future, at least, right now, anyway.

It really upsets me some of what I've said has been misinterpreted, thus misunderstood.

For that reason alone, some of my very words have been turned against me.

I'm going to leave it alone, rather than stir the pot though, because I'd rather there be peace.

Although I'd like to see the situation change, I have my reservations it ever will, yet I still wanted to pose the question.

I don't have the time and energy to argue nor do I need the stress, as I'm already sick enough, from what I'm having to endure, although not by choice.

So, for now, anyway, I'm just going to agree to disagree with those of you who don't see the situation the same way as I do.

For those of you who are fortunate enough to afford to see your LLMDs, good for you.

If you're ever in a situation where you can't though, maybe then you'll either begin to understand or understand even more.

For those of you who are less fortunate and can't afford to see a LLMD, thus your health is deteriorating, along with your quality of life, my heart breaks for you.

I will keep you in my prayers.

To try to change the situation, when you don't even know where to begin, is tough, especially when you're already sick.

Hopefully, someone, somewhere, someday will be able to successfully change it though.

I would try, if only I had more support, but unfortunately, that doesn't seem to be the case, at least, right now, as far as I can see.

Without a doubt, the need is there.

The willingness, on the other hand, is not.

It truly saddens me, but it does take more than just a few people to move a mountain.

I've always been for the underdog though and always will be, even if it has nothing to do with me.

Just like lyme, the less fortunate are the ones who are pushed aside and squashed, where many may actually listen to them, but few ever really hear them.

At the same time though, if something unfortunate were to ever happen to those who aren't really listening, then they would soon be the ones wanting to be heard.

Please feel free to share with me any kind of positive ideas, big or small, you can possibly think of, if you will, toward trying to positively change the situation.

I'll then consider whether or not I really feel like I can actually use it or them, in some way, to truly try to positively change the situation.

If I feel like there's a fairly likely possibility I can, then I'm certainly quite willing to give it my very best effort.

Otherwise, please do not reply to me about anything to do with the situation.

Rather than have to deal with any negative connotations, I'd really just rather forget I even brought the subject up.

Thank you for your understanding.

If someone can help Slappy2779 here, somehow, manage to get the help he needs and deserves, which results in him being afforded the opportunity to see a LLMD, then I will be quite happy, just by knowing, at least, one good thing came out of me even bringing this subject up.

My thoughts and prayers are with you Slappy2779.

Best wishes to you, my friend.

Love, Light, & Health,
Jennie

P.S. I changed the title of my post to what, I now feel, is much more appropriate, especially after all which has been said, at this time.

I now feel, I really should have used it, in the first place, instead of my original one.

I truly understand why LLMDs don't take insurance, thus that's not exactly the real issue I want to address.

Instead, after further consideration, I realize, the true issue is I'm looking for some real working answers, as to how alot of us here can work together, somehow, to try to find a way for those less fortunate, who really need and deserve to see a LLMD, to be able to do so and actually make it happen.

Perhaps that's where alot of misinterperations, thus misunderstandings, about some of what I've said, originated?

[ 28. June 2008, 04:56 AM: Message edited by: jjeennnniiee ]

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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slappy2779
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I just want to share something that has been helping me. I know it's long, but I thought I'd add something positive with hope.

Psalm 37
1. Fret not thyself because of evildoers, neither be thou envious against the workers of iniquity,

2. For they shall soon be cut down like the grass, and wither as the green herb.

3. Trust in the Lord, and do good: so shalt thou dwell in the land, and verily thou shalt be fed.

4. Delight thyself also in the Lord; and he shall give thee the desires of thine heart.

5. Commit thy way unto the Lord; trust also in Him; and he shall bring it to pass.

6. And He shall bring forth thy righteousness as the light, and thy judgement as the noonday.

7. Rest in the Lord and wait patiently for Him: fret not thyselfbecause of him who prospereth in his way, because of the man who bringeth wicked devices to pass.

8. Cease from anger, and forsake wraith: fret not thyself in any wise to do evil.

9. For evildoers shall be cut off: but those that wait upon the Lord, they shall inherit the earth.

10. For yet a little while and the wicked shall not be; yea thou shalt dilligently consider his place, and it shall not be.

11. But the meek shall inherit the earth; and shall delight themselves in the abundance of peace.

12. The wicked plotteth against the just, and gnasheth upon him with his teeth.

13. The Lord shall laugh at him for he seeth that his day is coming.

14. The wicked have drawn out the sword, and have bent their bow to cast down the poor and needy, and to slay such as be of upright conversation.

15. Thier sword shall enter into thier own heart, and their bows shall be broken.

16. A little that a righteous man hath is better than the riches of many wicked.

17. For the arms of the wicked shall be broken: but the Lord upholdeth the righteous.

18. The Lord knoweth the days of the upright: and thier inheritance shall be forever.

19. They shall not be ashamed in the evil time: and in the days of famine they shall be satisfied.

20. But the wicked shall perish, and the enemies of the Lord shall be as the fat of lambs: they shall consume; into smoke shall they consume away.

21. The wicked borroweth, and payeth not again: but the righteous sheweth mercy, and giveth.

22. For such as be blessed of him shall inherit the earth; and they that be cursed of him shall be cut off.

23. The steps of a good man are ordered by the Lord: and he delighteth in his way.

24. Though he fall, he shall not be utterly cast down: for the Lord upholdeth him with his hand.

25. I have been young, and now am old; yet have I not seen the righteous forsaken, nor his seed begging bread.

26. He is ever merciful and lendeth; and his seed is blessed.

27. Depart from evil, and do good; and dwell for evermore.

28. For the Lord loveth judgement and forsaketh not his saints; they are preserved for ever: but the seed of the wicked shall be cut off.

29. The righteous shall inherit the land, and dwell therein for ever.

30. The mouth of the righteous speaketh wisdom, and his tongue talketh of judgement.

31. The law of his God is in his heart; none of his steps shall slide.

32. The wicked watcheth the righteous, and seeketh to slay him.

33. The Lord will not leave him in his hand, nor condemn him when he is judged.

34. Wait on the Lord, and keep his way, and he shall exalt thee to inherit the land: when the wicked are cut off, thou shalt see it.

35. I have seen the wicked in great power, and spreading himself like a green bay tree.

36. Yet he passed away, and, lo, he was not: yea, I sought him, but he could not be found.

37. Mark the perfect man, and behold the upright: for the end of that man is peace.

38. But the transgressors shall be destroyed together: the end of the wicked shall be cut off.

39. But the salvation of the righteous is of the Lord: he is their strength in the time of trouble.

40. And the Lord shall help them, and deliver them: he shall deliver them from the wicked and save them, because they trust in him.

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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