LymeNUT topic: Good news... LLMD's new research center is underway


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Posted by Tincup (Member # 5829) on 10 June, 2005 01:43 PM :

Congratulations to Dr. Gregory Bach!

I just heard the new offices Dr. Bach and his family have been working to get up and running are moving along... A new Research facility for Lyme Disease!!!

From what I understand... They have bought the ground and will be building in Hamburg, PA... which is on Rt 78 between Harrisburg and Allentown.... I think about about 1 1/2 hours from Gettysburg.

Good news, good news!


------------------
If you get the choice to sit it out or dance...




Posted by cbb (Member # 788) on 11 June, 2005 08:42 AM :

Great news!!
I hope we'll get some updates as the project progresses.

It's just my opinion, but this is a good example of who should receive government grants.
Would love to hear that they are being awarded research money.

[This message has been edited by cbb (edited 11 June 2005).]

Posted by liz28 (Member # 4946) on 11 June, 2005 08:46 AM :

Very impressive.
Posted by aliyalex (Member # 6976) on 11 June, 2005 08:54 AM :

Oh this is good to hear, as I recently sent a friend a referral to Dr B. after reading about him. Very affirming. Their daughter should be in good hands...
Posted by ivebinlymed2 (Member # 7330) on 11 June, 2005 09:09 AM :

YAY!

It takes a brave soul to open a lab to research lyme.

My hat is off to him and his family for standing up and believing in something enough to devote their life's work to it!

Great news, indeed!



Posted by Lymeindunkirk (Member # 7118) on 11 June, 2005 09:12 AM :

Heard Dr. B had purchased land previously for his research center and then there was a problem with the land. Its good to hear he was able to find a new piece of land.

With what Dr. Bach charges though he doesn't need any research money. He certainly took enough of mine. About $9,000 in just three short months!

He told me he has 1200 patients. A conservative bill would be $650.00 for one person. He insists each patient visit once a month. You do the math. He is bringing in over 8 million a year more than likely.

Dr. Bach is knowledgeable but I think some lean towards the fame and fortune side a bit too much. Not enough true caring about the patient.

Not all of these doctors deserve to be given research money. Not the ones that charge so much they have patienst filing for bankruptcy because of the doctor fees or must go without heat for three months in the winter because they can't afford to get it fixed (a family I know with Lyme).

After three months of treatment I found another qualified doctor that doesn't gauge me for fees and doesn't insist Igenex test me every two weeks ($900). Dr. Bach didn't even ask if I could afford it. They just do it without asking me and charge it to my credit card.

If you have money to spare or don't mind seriously going without go see Dr. Bach otherwise I think you can use someone else.

Posted by ALSLYME (Member # 6721) on 11 June, 2005 10:30 AM :

How great is that! With Dr. B's number of years' experience and so many patients that he has helped, what better person to receive grant $$!

How many other LLMD's fight the politicians and the OPMC, and the Insurance companies as aggressively as he does?

Lymeindunkirk - I find your statements very unfair! He didn't "take" your money, you made a conscious decision to pay him for his expertise. At anytime you could've left his practice.

How much $$ do you think Dr. B has to pay to keep his Atty's on retainer, and for how many years, just to keep his practice open! He could've cowered away like so many other LLMD's ~ but he doesn't, he's a fighter as we all should be, because he believes what he's doing is right on, and he does care for his patients!

His monthly charges are not as high as you're saying they are. He's probably the last LLMD that is in this for fame and fortune. Do you see him charging to speak at events, like some of the others?

Lyme patients are not filing for Bankruptcy because of what their Dr. charges, my god, people are suffering medically and financially because of the CDC and Insurance companies refusing to acknowledge an epidemic disease, and therefore they are not paying!

No hard feelings, it's just the way I see it!

Take care!


Posted by NCLymie (Member # 6689) on 11 June, 2005 11:12 AM :

I don't know Dr. B, but I can tell you that my doctor in NC charged my insurance over $50,000 for my IV therapy. Now, I'm not complaining because I was treated and he had an excellent staff. I do complain however that now I am off the pic line, I am receiving 3rd rate treatment - I'm not cured by any means. Can't get an appointment with anyone! Also, he is selling a CD that he produced for HIV/AIDS with fancy publicity/marketing, etc., and builidng a new building. No wonder he has no time for patients. I have heard from other doctor's that they think he is brilliant, however, has become more on the side of being an entrepreneur. They are upset because they count on him to be their Infectious Disease specialist. His success is going to his head. However, that's his choice - and that's America. Unfortunatley for us lymie's there isn't another doctor around the corner to help us! That's my complaint about my Dr. here in NC!!
Posted by Foggy (Member # 1584) on 11 June, 2005 11:48 AM :

Tin, any idea if they will be affiliated with any academic or hospital research centers?
Posted by Lymeindunkirk (Member # 7118) on 11 June, 2005 06:51 PM :

Alslyme, I knew that there would be someone who wanted to argue with me on this subject so here goes.

I did choose to stop seeing Dr. B and did so after just three months. It took me that long to find another qualified doctor. I'm not over estimating his charges. I know this because I PAID THEM! Perhaps I should post my bills for you to review. I have had no less than ten emails from people agreeing with me on this issue. One even emailed to tell me he is a "crook". Now I don't believe that but his charges are high.

I feel he is very knowledgable but he seems to have developed an arrogance that puts off many people. Maybe he just has too many patients now and needs to train an additional doctor to work with him? I don't know what it is but it bothered me enough to make me change doctors. I have to worry about myself and my son not everyone else.

I see a lyme doctor now that is very caring and even called me on a Sunday when I was feeling particular poor. I can't see Dr. B. doing that. It took a phone call once a week for thirty days before I could even get my medical records mailed to me and even now documentation is missing that I had paid for.

It's sad that there are doctors out there that are taking advantage of the fact that they have a corner on the market. Some people are lucky and have insurance that covers some of the charges but almost no one's insurance remiburses all when the costs are as high as some of these doctors.

Can you tell me why some doctors charge so much more than others that offer the same exact treatment?

Is Dr. B charging different people different charges? And why would he do that?

Everytime I was in Dr. B's office people sat in his waiting room and complained about how long they had to wait and how much he charged. Some patients told me that they had gotten better and some said they hadn't. Intially I kept an open mind and listened to everyone, people who loved him and people who were angry. I wanted to form my own opinion.

I myself began the search for a new doctor after just one month. I truly liked Dr. Bach and it was clear that he has a passion about finding a cure for Lyme, but I didn't see the same passion towards the patient. It was an odd mixture that confused me. I wasn't sure if I should trust my instincts and find a different doctor. I think he is brilliant but it seemed to be his way or no way.

I did not care for the numerous test that were being done without my being given a choice and then charged to me without a care in the world as to whether I could afford it.

My present doctor lets me know what he would like to do and then tells me how much it will cost before it is done. I am given a choice to say yes or no.

Never once was I ever given a choice to not have a test done at Dr. B's office. Igenex testing every two weeks is very expensive. Never once was I asked if I wanted to purchase supplements. It was put on my bill and handed to me. When your sick and don't have any where else to go of course you have to pay it. My husband and others kept telling me I was nuts by continuing to pay him.

Haven't you read posts from some of his expatients talking about how they were refused treatment after missing one visit either for weather or because they couldn't afford treatment? Now that seems unfair!

It also bothered me a great deal that any doctor would expect SICK people including sleepy children, to wait, sitting in a chair, for over three hours to see him for ten minutes and then get an unpleasant shot at midnight. How arrogant.

I hope and pray Dr. B does very well with his research center and even finds a cure. It will take many great people with a special dedication to do this.

If I refer anyone to Dr. B, I explain that he is knowledgable and that he is a great place to start. I also explain the costs they should expect and the time involved. I try to remain fair.

I wonder however, has anyone ever seen Dr. B and been told they don't have Lyme? If so, let me know because it would make me feel so much better.

I'm sorry if you don't agree Alslyme. NO one is perfect and Dr. B certainly isn't. He is brilliant but that doesn't mean anyone should follow him blindly.

Posted by janet thomas (Member # 7122) on 11 June, 2005 07:35 PM :

Fabulous news, more Lyme research is needed.

Janet

[This message has been edited by janet thomas (edited 13 June 2005).]

Posted by lla2 (Member # 2364) on 11 June, 2005 09:08 PM :

I think the purpose of this post is to celebrate the opening of his research facility which we've been waiting years to get under way.

maybe if there are complaints they should be taken to anohter post, so that we can keep this a celebration as it was intended by tincup!!

Congats to dr. BAch!!\


Lisa

Posted by janet thomas (Member # 7122) on 11 June, 2005 11:45 PM :

Agreed.
Posted by Tincup (Member # 5829) on 13 June, 2005 02:29 AM :

I went to the car dealer and ordered a new Mercedes last year.

OH MY GOSH!

It cost me MUCH more money than I had in the bank! What were they thinking when they charged so much for the car?

How DARE they do that!

They must think I am going to pay for that new dealership they are opening over in the next county. My monthly payments are enough to cover their fancy advertising too. They just want to be famous and they don't care about the people who come there or the cars. I know they don't. If they did, they would do things MY way and charge me what I feel like paying.

I am sure their motives must be evil because I am so unhappy now. I am sure they didn't intend to provide local residents a choice of having a reliable vehicle available.

I will just have to try to discredit them as best I can now because they don't deserve to be paid more than I have... especially when other places charge less!

Someone told me.. after the fact.. if I would have done my homework in advance.. I would have known I could have gone to the Toyota dealer and bought a car for much less.

But I didn't want to travel all over the place to find a good car. I wanted them to be at MY service and I want to pay what I want and NOT more than I have.

I think the salesman I had was really stupid too because he insisted I get the car serviced on THEIR schedule... just to keep the warrentee in effect and so I would be safe while driving down the road. I think I should be able to do any follow ups at MY leisure.. and NOT be made to follow the rules from the auto manufacturers and state inspection boards.

And.. as I see it.. I can't afford to service my car that much... and pay that kind of money to do it!

To make matters worse....

When I called my insurance company to get insurance.. they charged me 5 times what I was paying for my old truck! Can you believe the NERVE of that company? I think they should charge the same as I paid before.. and if my car is hit by a driver in the parking lot... I should of course get a new Mercedes door panel and NOT a cheaper door panel just because I paid less than they needed.

And what a butthead the mechanic is. He used the most expensive oil when he serviced my car and didn't tell me that is what he was going to do. He just did it.

I told him afterwards I didn't think it was right.. but he said it was the best kind to use to be sure the car would be taken care of the best way possible.

Now... I will have to file for bankruptcy just to be able to drive back and forth to the grocery store to buy the food I need to live on. After all.. I HAVE to eat!



Posted by Tincup (Member # 5829) on 13 June, 2005 05:08 AM :

It's about 5 AM now. I have spent the last three hours straight working on another response to this post.

Needless to say I am NOT happy or I would have been in bed long ago. What a total waste of my time and energy.. but things need to be set straight... and people need to show some respect here for everyone fighting this disease.

As I started to copy the words I have written .. I noticed the sun was starting to come up. It has been a long while since I have seen that happen.

Ya know... I am going to wait and see if my previous post makes any sense... and see if I got through to anyone before I post the NINE page reply I just finished.

The BEST news I could have when I come back would be to see this entire post was edited and/or totally removed... and to have back the three hours of sleep I have lost on this ugly stuff.

Good night- to those who can sleep.



Posted by JRWagner (Member # 3229) on 13 June, 2005 11:10 AM :

Good Grief...have we all become so jaded that outragious Doctor's fees are defended?

Sorry...I agree with the poster who complained...there is abslolutely no reason why anyone should charge so much for an office visit, or charge so much for Igenex testing that costs $165 for the Lyme Western Blot!!!

I see a well known LLMD and his office visits are a FRACTION of those charged by Dr. B, or the OTHER Dr. B in Easthampton.

I have friends who have been going to these people for 2 years...no more...they were not miraculously cured, and the huge amount of testing ordered by these doctors did NOTHING to improve their patients health.

Since when is it proper to charge more for one sickness than another? These Docotrs ARE opportunists...there is absolutely no reason why some Doctors charge rediculous rates for phone calls when my Doctor can call me from his car for free.

STOP defending rip-offs just because these guys supposedly know Lyme!!!! Nothing justifies these attitudes.

In addition...the records of these PrimaDonnas are NO BETTER than those of the Doctors who are reasonable in their charges!

If more of us simply said, NO...I am not going to be ripped off, then they would get the message.

The analogy with the Mercedes was not valid. (Perhaps if you compared how many Mercedes Doctors drive relative to their patients charges...). When those with Lyme Disease go to a Doctor, the mental state of these patients are used against them. A Doctor comes across as ALL KNOWING...we tend to do what they say...only to realize after all is said and done that we are not getting better, just poorer. Buying a car is not the same as fighting for one's life...a car salesman is not a Doctor...although both can sure sell a bill of goods to the unsuspecting.


DO NOT justify a Doctor's charges by his legal fees...all Doctors face the same malpractice rates.

I can see a top brain specialist in NYC for less than these "Gods of Lyme" charge.

NOT one of you can prove these Doctors have a better "Cure Rate" than anyone else that is Lyme Literate and charges much less.

Docotrs are humans and they too take advantage of the situation. Hell, my friend that used to see Doctor B in Long Island, was charged $250 to see a P.A.!!!!! WHAT???

These were follow-up visits!!!!!!

MY FIRST VISIT COST LESS THAN THAT!!!

STOP being wacked twice...once by Lyme, and next by The Doctors.

In the late 60's we would have closed down these people...they are not our friends.

No Doctor, no matter what disipline, should bankrupt his patients.

The Hippocratic Oath is NOT the HIPPOCRITIC
Oath.

Doctors should be more concerned with helping the patients...

Now, if you are still defending these people, tell me why some LLMD's, IN ILADS, charge so much less?!!!

There is no valid defence for taking advantage of the sick...none.

Lymeindunkirk...I side with you here...you were ripped off when you trusted someone in a position of power. You NEEDED help...NOT what you received.

Peace, Love and Wellness,
JRW



Posted by Svengali Eyes (Member # 6118) on 13 June, 2005 11:58 AM :

A research facility for lyme is wonderful news, and if the doctors fees help pay for a cure for this insidious disease I wonder if people would still complain?

Going to a doctor is a choice based on many factors, one being whether or not you can afford too. I'm sorry but sometimes you get what you pay for. I mean someone had to graduate last, yet they still get to put MD after their name.

The Mercedes analogy was quite appropriate and very quick witted.

I'm glad there is a research facility in the works and thanks for sharing that news Tincup.

Sven

Posted by ALSLYME (Member # 6721) on 13 June, 2005 12:21 PM :

It's just my opinion, but, i think in our world, the medical profession is not unlike any other business. Many businesses can offer identical products and services, but the pricing structure can be dramitically different! We as Buyers make our choice accordingly.

When we're dealing with life and death, or lifetime disabilities, some people may have a sense of security, in their Dr., based on the years experience in their specialty field. I also think that it's hard enough to keep a positive attitude, and confidence in your Dr. can go a long way to help keep it in perspective.

I think it could be detrimental to some lyme patients, mentally, to start questionning their LLMD's of choice.

Take Care all!

Posted by riversinger (Member # 4851) on 13 June, 2005 12:28 PM :

Sorry, TC! Let me change my approach.

I'm glad to hear about the research center! Have you heard about the Smith bill that would provide money for research as well?

This is very good news for all of us. We need doctors with a thorough approach to take a look at what will really work in this illness.


------------------
Sonoma County Lyme Support
LymeLinks@xxxxxxxxx

[This message has been edited by riversinger (edited 13 June 2005).]

Posted by Tincup (Member # 5829) on 13 June, 2005 12:35 PM :

Number one...

This post was to celebrate good news for Lyme patients, for a change.

This post was to inform others that more help for ALL of us is on the way and that someone actually cared enough to make it happen.

Whining about and attacking LLMD's in public for whatever reason... WITHOUT GIVING THEM THE OPPORTUNITY TO DEFEND THEMSELVES... is NOT what this post is about.



Posted by Reno'sBack (Member # 7367) on 13 June, 2005 12:40 PM :

Lymeindunkirk,
Hamburg, Pennsylvania is where Cabella's is located...it's a HUGE Sportsman's Shop...Jeff & I went there last year. I think they said they reached the 1 Million visitor mark in 3-6 months...he'll have a very captive audience...someone did their Marketing Homework!

I, too, went to Colmar...like you, I lasted only 3 months. If we still have access to the archives on the Old Lymenet, there's pages of stories.
~Reno
I

Posted by Reno'sBack (Member # 7367) on 13 June, 2005 12:42 PM :

Lymeindunkirk,
Hamburg, Pennsylvania is where Cabella's is located...it's a HUGE Sportsman's Shop...Jeff & I went there last year. I think they said they reached the 1 Million visitor mark in 3-6 months...he'll have a very captive audience...someone did their Marketing Homework!

I, too, went to Colmar...like you, I lasted only 3 months. If we still have access to the archives on the Old Lymenet, there's pages of stories.
~Reno
I

Posted by lla2 (Member # 2364) on 13 June, 2005 12:42 PM :

that was my point entirely tincup....

this is a celebratory post..not one to complain on...you can complain all you want on another post..no ONE is taking that away from anyone...

just lets keep this a celebration the way it was intended..k?

thanks again, tincup!

Lilly

Posted by Tincup (Member # 5829) on 13 June, 2005 01:55 PM :

Number two-

Because of the combined efforts of MANY LLMD's, I am alive today... and so are so many many others. It appears this little fact is being missed by those crying "not fair".

FAIR is knowing the facts before publically attacking others who can't be here to defend themselves.

I have watched these LLMDs over the years... MANY years... do the research and work incredibly long hours... above and beyond what they get paid for... in the attempt to figure out what we can do to help the growing numbers of chronically ill patients.

I watch them try to publish medical papers and when no one (ducks) publishes them they spread their findings across the globe to help anyone they can... again, without getting paid for it.

I watch them work never ending hours with patients I wouldn't wish on my worst enemy.. patients with severe multiple continuing complaints who have been abused by the ducks for years on end.... patients with the brain power of an oyster and the body of a rotting mushroom... patients crying about anything and everything and not taking responsibility for their own health.. patients who demand to run the show and tell the doctors what they need without having any experience or knowledge... patients who expect them to be God-like and cure ALL their ills and misfortunes in an instant and use many modalities to do so, if they are trained to do it or not... patients who are irrational, threatening, wicked, and vile... and patients who expect the doctors to know everything about a disease that gets little funding and NO attention from even the local health departments.

I watch them sell off their personal belongings to pay for legal bills incurred when they have to fight for the right to treat you and me.

I have seen them mortgage their family homes to be able to provide help for Lyme patients.

I have seen them weekend after weekend providing free programs to any doctors or patients who will listen so they can help them... and using their own money to do it.

I have seen them terribly upset when a patient isn't better and all they know to do has been done. I see them suffer the pain along with the patient and work behind the scenes to provide them ANY help they can give. I actually saw a LLMD who personally took a patient (flew with them) to another LLMD who might be able to give better help.

I have NEVER EVER been refused help or information by ANY LLMD or Lyme literate lab I have contacted to help someone in need. Just this past week a LLMD volunteered to see a patient and to do the workup for them. A lab is also running the needed tests. This person was ready to end their life until neighbors contacted me about the situation. I couldn't say no. Neither could the LLMD.. or the lab. They offered to get the patient help right away. They have been doing this for YEARS!

If you pay a bit more than YOU think the doctor needs.. why not chalk it up to YOUR donation to help others who are worse off?

I have watched as the Lyme saga unfolds and have seen the personal struggles not many have been privy to over the years.

I am honored to be associated with such good folks.

I have watched as the Lyme debate with the ducks has taken it's toll.. and a HUGE one on the patients. I have watched as the Lyme patients themselves have caused undo suffering for these doctors by blabbing their personal gripes in public. I have seen the Lyme world crumbling as people who are SUPPOSE to be helping people, instead fight and split us apart.

Do I want everyone to support the LLMDs?

You bet your sweet @@@ I do.

Without them.. we ALL lose. We all will suffer. We all will be at the mercy of those who don't care and who purposely are trying to prevent us from getting help.

Each and every LLMD is different. They ALL contribute in some way. Those who have been up and out front with their help are the ones under the most attack... and are the very ones who are taking all the pressure off OUR backs as we TRY to recover.

I owe them my life. So do you.

To trash them publically is like cutting your own throat... and it does us ALL a disservice.

I agree... they aren't perfect. Neither am I.. and my bet is neither are you. But I know a good thing when I see it.

I agree, some do charge more than others. Some also PAY out more than others. A nurse in NY makes double that of a nurse in Alabama for example. And yes.. office expenses vary from place to place.. and yes.. malpractice DOES cost more in some places than others. My doctor recently had to drop to 20 hours a week because of the malpractice rates in that state. He did 80 hours work for 40 hours pay last year.. and now does 80 hours work for 20 hours pay. He does it to help YOU.

The costs for malpractice insurance are so bad in the state where I live that legislation has been introduced and doctors went on strike because of the costs.

How many of you... who go to doctors who charge less... are publishing papers for the good of us all? How many are providing the proof we need to be able to get treatment?

How many are doing bonified research and sharing it with the world?

How many have developed guidelines? Or have helped the cause with legal measures?

How many work with Congress to get laws passed to help US and future generations? How many have attended the hearings and have written letters to support legislation?

How many must pay attorneys out of their pockets to ward off all of the IDIOTS who want them shut down.. so they can help US?

How many do free programs in their time off? How many organize and attend conferences and/or present programs for other doctors, in order to help them?

How many actively go to the newspapers and press to bring our plight to the forefront in order to get US help we need?

Will I support these folks?

You bet your sweet @@@ I will.

And those who don't.. you might want to stop biting the hand that feeds you.. and ME.

If not for your own personal gain.. for the benefit of those of us who NEED these doctors and appreciate them for their contribution.

And I ain't done yet.

We must unite.

To not to so will bring more suffering and death.



Posted by Tincup (Member # 5829) on 13 June, 2005 03:14 PM :

Number three-

It was said here..

"It's sad that there are doctors out there that are taking advantage of the fact that they have a corner on the market."

This MIGHT just be the worst thing I have ever heard a patient with Lyme disease say about a LLMD.

This is kinda like accusing a carpet cleaning company of bringing hurricane floods to a specific area just to drum up work for themselves.

These doctors didn't invent Lyme.. they didn't bite us.. nor did they get anyone infected.

They certainly didn't wish it on us and they didn't have the ability to stop it. To think they would gain by our tragic situations is sad.

And expecting LLMD's to cure us all is like expecting carpet cleaners to hold up an umbrella to stop the 20 foot high crashing waves.

The LLMD's don't WANT people to suffer.. and haven't been sitting there like vultures waiting to pounce on the sick and disabled.

They didn't make the ducks turn us away and strip us of all our money without giving us a proper diagnosis or treatment... and prevent us from getting help.

They didn’t force a chronic illness on us. They simply stood up and rose to the ocassion when it was presented to them... and attemped to help in the best way they could. REMEMBER.. most LLMDs have a personal stake in this health crisis and THAT was their motivation for helping others.

We came to THEIR doors seeking help that we could NOT find anywhere else. We asked, no BEGGED THEM, to take the risks and do something to help us... and to heck with the "rules". They did help. They were the few who did. They risk everything for us.

And remember.. a LLMD didn’t come built with a set of instructions on how to cure all of us. They had to learn.. and it costs to learn.. and they are STILL learning.

Saying what was just said would be like saying...

A doctor in a third world country... with an exploding AIDS epidemic going on... where
there are only 2 doctors per 1 million people, have a "corner on the market".

How tragic it is that anyone would think that maleria, small pox, or any disease would just be put here to allow someone... who had NO control over the situation... to "corner the market" when they tried to help and were surrounded by folks who wouldn't.

The LLMD's we have.. the few who would attempt to deal with this problem .... are
NOT in this for the fame, fortune, or money. HA! That is one of the most rediculious things I have ever heard.

We ain't worth it! Those things can be gained by many other avenues... and to accuse the LLMDs who work so hard of doing that, especially without having any acts to back it up... is HORRIBLE!

And how famous can a person become who is being bashed constantly, threatened, and under attack?

If the LLMDs wanted those things.. this is NOT the easy or pleasant way to get it. I can't imagine what a nightmare their typical day is.. each and every day. I mean .. look at what is being said HERE from people the doctors stepped out on a limb and TRIED to help!

If a particular doctor doesn’t suit your needs.. MOVE ON! Give them credit for trying and admire them for helping others... instead of bashing them for doing what thousands and thousands of others don't bother to do... which is HELP us at their own risk!

Yes.. it is nice to have some part
time LLMD’s offering to help Lyme patients now. It is actually wonderful that they are being educated and are now getting on board by taking on some new patients.

But you must ask yourself...

Where did they get the Lyme education to take on Lyme patients? How many of these new PART TIME- LLMD’s have been there from the get-go and done the ground work that ALL the treatment is based on?

These newer doctors do have it easier than the early pioneers in the field... and not to knock them for their beginning efforts... but I don't see them opening research centers for folks using some of their own funds at this point... or putting in the effort on the side that was done for year after year.

Maybe someday? And if they do.. maybe they will have to raise their rates to accomadate the new facility and provide staff for it? Should I bash them for going the extra mile for the good of everyone?

And... WHO would have ever heard the word "Lyme treatment" if it weren't for the ORIGINAL LLMD's?

How many newer LLMD’s have NOT seen the work the original LLMD’s have done in the past... and have not followed it in some way, shape, or form, to help YOU?

The few doctors we have.. and yes they have their quirks and each one is different...
happen to be a handful of DEDICATED regular joe's who were thrown (unexpectedly)
into an epidemic of unbelievable proportions and are dealing with it the best they can...
and all the while are having to fight everyone to get US help and keep their doors open so we have someone to help.

Yes.. I want a cure. I want more LLMD's. Heck, I would like to be able to afford one of the best docs myself. I think I deserve it. But I can't afford them. Knowing that... I certainly wouldn't go sit there and whine and complain about it.. then kick them because of MY personal financial situation.

I MUST take on some of the responsibility myself for my situation. I MUST understand it is not THEIR fault I can not go there... it is MINE! I can't expect them to cater to me and me alone. And I can't bash them if my income prevents me from getting the best help out there. I also can't afford the Mercedes.

Just the other day I had someone call who wanted the best of the best for their situation. I mentioned costs.. and they said they didn't care what it cost... they wanted the best. THEY could afford it.. and MAYBE they will even donate extra to the cause so others will benefit? That is nice to see. If they needed someone who took insurance.. I would work on that angle. It is an individual thing.

If a dress doesn't fit when you buy it.. get another one. Don't bash the dress cause your *** don't look good in it. The dress doesn't deserve your wrath. It didn't make you eat that cake.

I want a LLMD in every doctors practice. It is OUR right to have such a thing.

But it isn't going to happen until ALL of us work together.. and all of us do our part to support these doctors and get them help they require... so they CAN HELP US!

Until each and everyone of us can do the work these doctors do.. it is unfair of us to kick them on a public forum where they can't defend themselves.

If you don't like what they charge.. simply say.. IF ASKED..

"This doctor charges more than I can afford. Here is an alternate approach."



Posted by Tincup (Member # 5829) on 13 June, 2005 03:21 PM :

And YOU.. yeah YOU... JR..

I ain't even started with you yet!

But NOT to worry.. your turn IS coming.

But first I need a break to bring down my blood pressure. I think I will go jump in the lake and see if that cools me off.

And just to mess with your mind.. cause I know how you get...

I'll be in my birthday suit.

------------------
If you get the choice to sit it out or dance...




Posted by Foggy (Member # 1584) on 13 June, 2005 05:02 PM :


quote:Originally posted by Foggy:
Tin, any idea if they will be affiliated with any academic or hospital research centers?

Tin, any idea?


Posted by janet thomas (Member # 7122) on 13 June, 2005 05:26 PM :

Tin Cup- You're absolutely right- I think we all must delete any and all negative comments-I'll start.

janet

Posted by janet thomas (Member # 7122) on 13 June, 2005 05:27 PM :

Tin Cup- You're absolutely right- I think we all must immediately delete any and all negative comments-I'll start.

janet

Posted by JRWagner (Member # 3229) on 13 June, 2005 05:57 PM :

Tincup...sorry to disagree. I am comparing Apples to Apples...Doctors, LLMD's in the SAME STATE...approx. the same costs associated with their practice.

Sorry...I do not see how this compares with a nurse from Alabama. My Doctor is in Westchester...the most expensive county in NY, apart from Manhattan.

In FACT, Dr. M, in Manhattan, an LLMD for years, charges much less than the Doctors we are discussing.

Yes, yes, we all owe them gratitude...but NOT OUR BANK ACCOUNTS.

Have
Please explain how my Doctor does not charge for phone calls, etc.

Please justify charging more...Oh, I know...they have hidden costs my Doctor does not? Sorry...wrong again.

STOP being infatuated simply someone trests Lyme...

By the way...I have discussed this with my Doctor (LLMD, HUGE LYME practice)and he JOKINGLY stated that he must raise his rates as well.

Attacking? These Doctors attack your financial well being...but I guess this is OK? When are you going to stop being taken?

Can one of you prove to me, or to anyone else, that the Doctors who charge more have more expenses? Can you show "cure" rates are better with these Doctors? Can you show that ordering all the tests and charging a profit for these tests makes sense?

In addition, I am not going to a Doctor for tests...I am going to be cured...aren't we all? Unless you accept the premise that this is not possible...I don't...and I have been sick for 11 years.

My Doctor, and others that I know of, charge based on ability to pay...HOWEVER...they do NOT approach the rediculous fees these other Doctors charge.

When I told my Neurologist, at Cornell/Pres., what these LLMD's charge, he could not believe it...he charged my $155 for my first visit...and the man is a well respected neurosurgon!!!!IN MANHATTAN!!!!

Think: Are his costs LESS than those outside Manhattan? PLEASE!

If you all are so naive as to think that higher rates mean a better Doctor, I have a bridge for sale.

Perhaps you would like to speak to MANY friends who went to Dr. B, the Guru...and have found him less that desirable...treatment was the same as from my Doctor...

POINT is we TRUST these Doctors to be better...and they are NOT!!!

PROVE THEY ARE!!! Stop accepting and stand up for yourself...defend the Doctors who charge and treat fairly...

Yes it MIGHT be a good thing that someone is setting up a research facility...but what will the criteria be? What will be the costs to the patients? What "research" will this Doctor do that has not already been done? Will there be PHD's in Bacteriology employed here, or just MD's??? etc., etc.


I am not disrespecting anyone...but when a Doctor's office charges $250 for a follow-up visit...with a P.A., and my Doctor charges less than that for the FIRST VISIT...what does this say to you?

Your logic says the Doctor has a right? WHAT HAPPENED to the concept of helping the patient first, and business second?

I am not saying these poor Doctors should do this for free, but enough is enough.

Yes, the Mercedes analogy was only appropriate when we are discussing how many Mercedes we patients helped the Doctors purchase, by paying too much.

YES...you can all do what you want...but paying more only guarantees you will be poorer...not healthier.

Proof that this society has become so money orientated that we can overlook such obvious price gouging.

Hell...at the ORIGINAL Woodstock Festival a food vendor was trashed for charging $5 for water...in 1969!!!! I guess to you, supply and demand trumps principal?!

Pay what you want folks...you will ultimately reach the same stage as someone paying far less...guaranteed.

I choose to defend fair Doctors...not those who over charge, and if you can't see this, sorry...being grateful does not mean being naive.


JRW

Posted by ALSLYME (Member # 6721) on 13 June, 2005 05:57 PM :

Tincup i love you more everyday! You go get 'em!

We should get you your own Talk Show - Tell It Like It Is, by Tincup!

Thank you for saying what needed to be said!

Posted by Lyme ED (Member # 3191) on 13 June, 2005 09:24 PM :

There is no question that some doctors are taking advantage of the fact that so many Lyme patients are desparate and have no where else to go for help.

If we could be treated by "regular" doctors, ON insurance plans, the doctors charging the outrageous fees would have empty waiting rooms.



Posted by Tincup (Member # 5829) on 13 June, 2005 11:49 PM :

Whew.. shake MY tail feathers.. what a nice dip.

Not YOU... JR.. the one in the lake!

You said.. "Tincup...sorry to disagree."

I am glad we can disagree and still be civil... and friends. I have respect for you.. as you know.. and the others here.. and I know I am coming on strong.. so I am happy to see you rise to the ocassion and share your views... and accept mine in rebuttal. Thanks!

Bottom line.. I am happy that YOU are happy with your choice in doctors. That is what means the most to me.

You said.. "Please justify charging more...Oh, I know...they have hidden costs my Doctor does not? Sorry...wrong again."

I am not able to say exactly why your doctor charges what he does... but I do know why others have more expenses. I have personally contacted them and asked about it so I would feel knowledgable about sharing info when asked... and to sooth my own questions about it. I mentioned earlier about the lawyers, research costs, higher overhead, programs, etc.. so others here will simply need to figure out what their doctors do and adjust the costs to figure it out for themselves. If they feel they don't want to pay the fiddler.. don't. No one is making them do that.

You said.. "STOP being infatuated simply someone trests Lyme..."

NOT quite sure what that trasnslates to.. but if I am guessing right.. no never mind... I can't decide what that means. Sorry.

You said.. "Attacking? These Doctors attack your financial well being...but I guess this is OK? When are you going to stop being taken?"

Actually JR.. and others.. I don't have a LLMD right now. I can't afford one. I can't even afford a good duck at this point... if there were such a creature. Wish I could wrangle me up a LLMD.. but the fact is.. the ducks got all the dough years ago.

So no one is attacking MY financial well being. And no one is "taking me". Except Mel Gibson of course...

I am not able to pay.. so I just don't go. That is opposed to going and whining. If those who can't afford to go wouldn't commit themselves to going.. they wouldn't have anything to complain about either. If they were that concerned about costs and money.. they should first do their homework and check it out.

You said.. "Can you show "cure" rates are better with these Doctors?"

I have NEVER ever ever ever said or told anyone they would be cured by going to ANY LLMD.. EVER!

I have NEVER ever ever said if you pay more, the doctors "cure" rates are better... no matter what.

Truth is.. It is all gamble. There are NO "for sures" in Lyme. Those with lots of money can remain just as sick as those with little. Money does not buy a cure for Lyme.

Kinda like going fishing. I can go to the local gas station and buy a dozen worms for $3.25. If I go to the next town over to get them.. it costs me only $2.95.

Will I catch more fish using the worms I paid more for? I doubt it.

Do I argue with the place because I must pay more for the worms I need when I go fishing? No.

Am I being a bad consumer by not complaining and whining when I am buying the local worms? Perhaps? However, if I go to the next town up... about 30 miles round trip.. the costs for gas need to be figured in... and MY energy levels too.

Am I happy with the worms I pay for.. expensive or cheap?

When I catch fish I am.. just like when I go to a doctor .. and they help me.

If I pay for the worms.. no matter what the price.. and I don't catch fish.. I'm not as happy.

You said.. "Can you show that ordering all the tests and charging a profit for these tests makes sense?"

When I have tests done.. and I can't speak for all places everyone goes to.. I have to order the kits myself... and wait for them to arrive. I then must make an appointment.. HOPE the doctor will even consider running them... explain my heart out why I need them and what I need... do the homework in advance to be able to explain the details... beg them to draw blood or give me an order for it.. travel to the lab to get the blood drawn on the right day so it can be shipped.. wait there for my turn.. go through the same explanations over again... educate the lab techs about what I need and how to do it.

Then.. I must double check things.. wait for them to finish.. rush the package to the post office before closing after putting everything inside.. HOPE I got it right.. and wait.

Then I have to contact the doctors office.. wait for someone to TRY to explain the results.. which they can't.. go back and pick up a copy of the results myself... learn how to read them properly... and cipher through to see what it all means.

I would be THRILLED if someone were to do that for me and not make me have to go through that mess anymore. I would gladly pay more for that service. It already costs me a lot in time and effort.. as well as cash... to do what can be done for me at a LLMD's office.

You said.. "In addition, I am not going to a Doctor for tests...I am going to be cured...aren't we all?"

I guess that is one area where we see things differently. I will be happy if I am cured some day.. but I no longer expect to be. Not with a LLMD that costs a little.. or one that costs more. I am being realistic in MY situation and do not choose to chase the elusive cure and beat myself up when it doesn't happen.

So.. when I go to the doctors.. I actually DO go for the tests so I can monitor my situation the best I can and try to learn all I can so I can be my best... and help others who are in the same boat... and hopefully make a contribution. So our goals are different in that you are seeking a cure and not tests.. and I am doing the opposite.

You said.. "If you all are so naive as to think that higher rates mean a better Doctor, I have a bridge for sale."

Again.. I have NEVER indicated higher rates means a better doctor or a better cure rate. Some folks go to a doctor 50 miles away that may cost more.. but they save on plane fare, hotels, etc. Some prefer to go to one that specializes in herbal stuff, Bartonella, brain scans, etc. The costs DON'T make the doctor.. and folks are free to chose. If one is 6 hours away and costs $200.00 less.. it may be worth the trip. It is a matter of what each individual thinks they can afford and what suits them best in THEIR circumstances.

You said.. "Perhaps you would like to speak to MANY friends who went to Dr. B, the Guru...and have found him less that desirable ...treatment was the same as from my Doctor..."

EXACTLY MY POINT! The older LLMD's have put in the time.. and have handed their findings out to one and all so everyone has the best chance possible to help themselves!!!

I LOVE them for doing that. And they don't charge me one cent for their work.. or your doctor one cent for him to be educated.

It was nice of Dr. B to share all his hard work and research with YOUR doctor (and everyone who ever inquired)... so YOUR doctor could treat you and others and NOT be in the firing line and threatened to be closed down... and digging out from under additional costs.

Luckily your doctor didn't have the same research expenses.. the same persecution problems.. and the horrific legal expenses others have in the past ... which got ALL of us to the point we are at now. You benefitting from all this is good!

I do hope your doctor and all the others are, in turn, making the same contributions to the cause and are writing up their findings, coming up with more answers for us all, kicking *** and are able to help many patients... etc. I hope now that all Lyme patients aren't concerned their doctors doors could be shut tomorrow with NO notice... like the ones who are sticking their necks out.

But the truth is... research costs money. Those who don't do it save money. ONGOING research helps us come up with more answers. Ten years ago I don't think ANYONE was checking Lyme patients for a dozen coinfections. Now they are. SOMEONE is still trying to better the situation for all. If their costs are higher to a handful of patients... so be it. I would gladly contribute if I could.

You said.. "POINT is we TRUST these Doctors to be better...and they are NOT!!! PROVE THEY ARE!!! Stop accepting and stand up for yourself...defend the Doctors who charge and treat fairly..."

I do defend the doctors who treat Lyme patients.. as you can tell by my posts. I am devoted to them for doing what they have done. They can't be here to speak for themselves.. and I certainly can't speak for them.. but I WILL shout from the mountain tops when I see them being slammed by someone who does NOT know the facts.

BUT.. if I find a LLMD to be doing something that will endanger or harm a patient.. I will be the first one in their face... and I will come out punching. Office fees are NOT a good reason to punch out someones lights because paying them is the choice of the individuals who chose to go there.

I do not... and will not.. try to disect all the reasons a LLMD charges one fee or another. Just like the worms. If I want them and can afford them.. I pay. I don't complain that THEY are the problem when I can't afford the fees... when in fact it is my own purse that prevents me from seeing any of them.

If I find someone who can help me for less.. that is great.. but I don't expect the LLMD's who don't have the research and legal expenses that others do to have the same fees. It is nice some doctors can simply read and then treat, no muss no fuss, from the well prepared reports based on years of LLMD's experiences. That is what we need.

You said.. "Yes it MIGHT be a good thing that someone is setting up a research facility...but what will the criteria be? What will be the costs to the patients? What "research" will this Doctor do that has not already been done? Will there be PHD's in Bacteriology employed here, or just MD's??? etc., etc."

What if I told you there will be free testing and treatment for anyone who enters the studies? And not only will the patients get the best of everything... they will be contributing to research so others can be helped?

What if I told you there will not only be MD's.. but biologists, chiropractors, acupuncturists, O2 therapy, rife machines, and the best labs, etc.. all for free?

It would be nice... no doubt. But I can't say what they will do because I really have no clue.

Neither do you.

Neither does anyone here.

If anyone wants to know.. ASK! I would have, but haven't had a chance. I am simply announcing a new facility.. the first of it's kind.. that should be able to help MANY patients.

EVERY decent research paper that comes out helps me. And that in turn is used to help others. I am excited that I MAY have more answers soon.. and that SOMEONE cared enough about us to help all of us.

You said.. "I am not disrespecting anyone...but when a Doctor's office charges $250 for a follow-up visit...with a P.A., and my Doctor charges less than that for the FIRST VISIT...what does this say to you?"

My guess is some folks will never have the experience others have had in the past and will never look beyond their pocket books at the true inside story to be able to explain this type of thing. Some will never bother to ask a LLMD why this happens... and will always complain about money. I wish that wouldn't be the case.. but it looks as if it is.

MY question is... why trash LLMD's when people don't know the true story? That's all.

You said... "Your logic says the Doctor has a right? WHAT HAPPENED to the concept of helping the patient first, and business second?"

Do me a favor. I have a list of over 180 ducks I have seen. If you will.. ask THEM this question. THAT is where MY money went. That is where that 30 million just went that the taxpayers forked out...

Yes.. for duck based research. That is where the taxpayers money went when that vaccine was developed and over 1,000 patients were negatively affected. I want THOSE answers first. Over 18 years worth of dumping money... for nothing.

Now.. if a doctor charges me more to make a bigger profit.. and he helps me in the mean time.. so be it. Geeze.. I can't expect someone to save my life and then question them after the fact about their costs. I won't slam the guy who sells me firewood when I need it because he wants to make more for his family.. so why try to slime the LLMD's? That is ASSUMING this is the case.. which I am NOT assuming at all. In my mind I am satisfied that I have researched enough now to be comfortable with the answers and situation.

Do I wish the charges were less for everyone? Yes, of course I do. I actually feel NO ONE should have to pay for ANY medical care in our country. Can I fix that? Not until I become president.

As long as the product is good and I am happy.. so be it.

You said.. "Yes, the Mercedes analogy was only appropriate when we are discussing how many Mercedes we patients helped the Doctors purchase, by paying too much."

Actually this sounds like a very "stero-typical" comment. Kinda like finding doctors on the golf course. Many I know have never played golf.. much to MY surprise! I usually try to judge on an individual basis when someones reputation is on the line.

One of the best doctors I know had a small truck that he was still making payments on.. and it was older than mine.

I actually had a doctor recently who painted houses for a living. He only saw folks after normal working hours.. sometimes still dressed in his painting clothes.. in his home on the back porch. He LIKED being a doctor.. but even if everyone in town were sick... all the time.. there still wouldn't have been enough people to support him and his wife in their small home.

And trust me.. if I could afford a fancy car.. I would buy one. I don't begrudge others for being able to have something I can't. Makes no sense.. and I would live an awful unhappy life if I did. I don't slam Bill Gates for making money when I am happy with his computer stuff.. but maybe that's just me?

Actually.. tain't none of my business what anyone makes. If he is happy, I am happy, and no one is hurt.. who cares?

You said.. "Proof that this society has become so money orientated that we can overlook such obvious price gouging."

I would rather spend my time barking up the IDIOT ducks trees.. and the insurance companies tree. Now THAT, is a sin.

You said.. "I choose to defend fair Doctors...not those who over charge, and if you can't see this, sorry...being grateful does not mean being naive."

I choose to defend any doctor who puts out an effort to help others. That is MY first criteria. I am especially dedicated to the LLMD's.. the ones who I grew up watching as they stuggled to find answers for me... and saved MY life and the lives of many others.

I only wish this passion everyone has when their pocket books are in question would be focused on the ones REALLY responsible for this mess... the ducks... the insurance industry.. and the ones who suck up research money and produce horrible results.. or none at all.

Now.. my friend... have I talked you to death yet? I may not be able to express my point of view correctly sometimes.. but I can surely wear people down having to read through my rambling. HA!

It's been nice coming out to play tonight. I think you have stated your position very clearly. I very much respect for people who take a stand on a topic they are passionate about... even if they ARE wrong. (JUST KIDDING)

I am simply hoping to show folks the other side... and I know you think that is the fair way to be.

Now... want some ice cream? It's hotter than get out in here. I guess it is time for another dip.

NO.. NOT you JR... the lake and the ice cream!



Posted by Tincup (Member # 5829) on 13 June, 2005 11:55 PM :

I was going to try to reply to others tonight.. but I am plum wore out. Will do so later, if you don't mind.



Posted by achtungBb on 14 June, 2005 11:18 AM :

I am wondering why you guys can bash about and mention drs names and Once Bitten got censored and kicked off, with no warning I might add, and had her posts edited by J------r without her permission, putting more words in her mouth...
so how can that be???

You guys are all telling the truth as you know it and its appreciated...so you bicker, so what....but why do you think Once Bitten got slammed so badly?

Someone else here complained about dr J and her experience with him...and is still here??

hmmmmm...........wonder where once bitten went.?????

btw do you realize that we are just following the laws of human nature here?
and doing exactly what the AIDS guys did?

just take your meds, go in peace and look outside of NC for an LLMD

Posted by Tincup (Member # 5829) on 14 June, 2005 02:40 PM :

cbb..

You said.. "It's just my opinion, but this is a good example of who should receive government grants. Would love to hear that they are being awarded research money."

Yes.. it would be nice. I don't have that answer.. but I do hope that is in the works too!

ali...

Yes.. I think Dr. B is VERY knowledgable about the topic. I know also he is ALWAYS searching for better things for his patients. He has had some wonderful success stories.. and takes many of the worst cases. He is as passionate or more so than I am about the idiot ducks.. and it would be a tie to see who has the biggest mouth and who "blows it off" more while NOT being "politically correct".

If ever a contest were started to see who has the biggest foot in the mouth problem when it comes to barking about Lyme and the horrible way patients have been treated.. chances are we would perhpas tie on that!

He believes in what he is doing.. and believe it or not.. he has referred to his patients, when I spoke with him privately, as "his family"... which I admire so much.

He is under EXTREME pressure from our idiot trolls, and many many who want him to be still and roll over and play dead. But he is not about to shut up.. like me.. and in spite of all the pressure he manages to help many people.

I only wish patients knew how much pressure ALL of our LLMD's are under... ALL the time.

Can you imagine going to the store one day.. and coming out to find your car gone.. and then you realize your home and everything else is gone too.. including your family?

EVERY day these doctors out there talking about Lyme wake up, they have to wonder.. will the research I did.. or the publications I wrote.. or the programs I did.. or the speeches I gave to help folks come back and haunt me?

Every day, when they go to their offices, there is a chance that someone is there to shut them down. Bogus charges or not.. these doctors.. the ORIGINAL LLMD's.. must defend themselves against these charges... and to boot.. they are situated on a VERY unfair playing field.

They are NOT given rights like you and I have... and are considered GUILTY of "over diagnosing" and "over treating" Lyme disease.. until.. without being allowed a proper defense and fair hearing.. proven innocent!

NONE of the lawyers fees, paper work fees, research for the hearing, etc. etc... are covered by malpractice insurance. Neither are the fines, being off work... the extra hoop jumping .. or anything else.

This comes from their pocket.

Please.. do note the bill in NY is trying to allow these doctors their rights and if you haven't followed the action alerts.. please do. It WILL make a difference.

Ok.. I am getting off track again. I am a big mouth.. no doubt. Sorry.

I do hope ali.. that your friends little one is helped. Just from patients doing what they are told.. I have seen wonderful results.

Hey hey ive..

You said..

"My hat is off to him and his family for standing up and believing in something enough to devote their life's work to it!"

Amen! Exactly how I feel about ALL the Lyme doctors efforts. There are others who have done TONS more than they should have.. to benefit all of us. Bless their little pea picking hearts.



Posted by lymiecanuck on 14 June, 2005 02:44 PM :

Great news indeed.

I hope everything goes smoothly and that as a result of this more recogniton and long term adequate treatment results.

Lymiecanuck

Posted by Tincup (Member # 5829) on 14 June, 2005 03:11 PM :

ALSLYME- You said..

"Lyme patients are not filing for Bankruptcy because of what their Dr. charges, my god, people are suffering medically and financially because of the CDC and Insurance companies refusing to acknowledge an epidemic disease, and therefore they are not paying!"

BINGO! Well said! Find the root of the problem Daniel-son.

As I try to figure out why there are these scattered complaints (aside for the $$ which can always cause problems when a person has too few to start with).. I am wondering if perhaps the history of what has happened in the past is not known by many of the newer members?

NOT that I am prepared to run through bit by bit the past 30 years... but that may be something for me to consider when I see posts like this?

I do know LLMD's are not saints. I am sure they leave their dirty clothes on the bathroom floor once in a while.... and they may even run the car out of gas and not refill it sometimes.. and they probably.. as smart as they are.. haven't figured out how to change a roll of toilet paper yet. BUT..

As far as dedication, caring, intelligence, and knowing Lyme and taking that extra step.. or mile.. for all of us.. they are tops in MY book.

Hey.. once someone teaches them to not walk out in front of cars in traffic.. and to not spit into the wind.. and that the pot on the stove is actually HOT if steam is coming off it... we might just be able to nominate them for some kind of award. Ya think?

NCLymie.. You said...

"I do complain however that now I am off the pic line, I am receiving 3rd rate treatment - I'm not cured by any means."

I am sorry you are not feeling good now. Unfortunately, this is one of the consequences of having a disease that has no known cure that works for everyone.

I am off my lines too.. and have been on IV several times.. and I am not cured either. I have to accept that and just try to muddle my way through. I hope you feel better and find peace. If there is anything we can do to help.. please let us know.

OK?

Foggy.. hey out there!

Last I heard you were feeling better. I hope that is holding true now?

You said.. "Tin, any idea if they will be affiliated with any academic or hospital research centers?"

Truth is.. I MIGHT have been told years ago when they started this project... but my memory has failed me and I don't know. I do hope to find out more and will post as I do.

Hey Lilly, janet, and liz...

YES YES YES!!!



Posted by Tincup (Member # 5829) on 14 June, 2005 03:55 PM :

Sven..

You said..

"A research facility for lyme is wonderful news, and if the doctors fees help pay for a
cure for this insidious disease I wonder if people would still complain?"

Well said!

I wouldn't complain! It sure would beat all that wasted money that was spent on a
vaccine that was worse than useless.

And my thoughts are that IS what is happening with his fees (new research)... but I can't
confirm it yet.

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

Hey River...

I want to go jump in one about now. It is 90 degrees right now in my room. Hot cha cha
cha.

You said.. "I'm glad to hear about the research center! Have you heard about the Smith
bill that would provide money for research as well?"

Yes.. I have reviewed it with a fine tooth comb. I have revised it.. rewritten it.. and slept
with it.

Actually I have studied it very closely. I am also advised another bill is about to be
introduced and am waiting to tear into it also with the same approach.

I think research dollars are great! And in the right hands.. we could do some rocking and
rolling!

Will let you know what I find out after checking both bills side by side. I think that is the
fair thing to do before jumping on one or the other... or both?

Please stay tuned!

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

Reno...

It seems your reply was addressed to one person.. and I am not sure what all it means.. so
I'll just say "hey".

Lyme ED..

Thank you for all the help you provide to folks here. I am always impressed by your
posts.

You said.. "There is no question that some doctors are taking advantage of the fact that so
many Lyme patients are desparate and have no where else to go for help."

Yes.. I think you are right. I have heard of some and as far as I know they were run out
of town (stopped treating Lyme) by Lyme patients protesting. They were also involved in
some other questionable things at the time.. and because of that I will not support them. I
believe the doctors who do the research though.. and are involved in the giraffe neck
syndrome have an entirely different situation... and they have a "leg" to stand on while
providing the original literature and the updates for ALL of us world wide.

And I agree about insurance too. If all LLMD's could take it.. it would be VERY helpful
and would level the costs for all. Too bad the industry just won't pay and instead spends
time and effort on trying to prosecute.

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

ach...

You said... "I am wondering why you guys can bash about and mention drs names and
Once Bitten got censored and kicked off, with no warning I might add."

I didn't know she was kicked off the board? I haven't seen her using that name lately.. but
I have been on and off the board lately.. so I am not up to date on all the goings on.

I do believe, however, she had been warned several times about violations in the past... so
maybe with the newer policy of no second chances.. the moderators decided enough was
enough?

That question might better be answered by the LymeNet folks. Wish I knew more and
could answer your question.

And you bring up a good point. Why are folks bashing doctors and NOT getting tossed?
This IS in violation of the rules.

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

Lymiecan..

I hope this research center helps YOUS guys too!

ALL of us!



Posted by Kimmi_K_75 (Member # 7438) on 24 June, 2005 11:41 AM :


quote:Originally posted by Lymeindunkirk:

If you have money to spare or don't mind seriously going without go see Dr. Bach otherwise I think you can use someone else.[/B]

Is there a way you can mail me? I'm also a pt. of dr. b

Posted by Lymerayja (Member # 6839) on 25 June, 2005 01:32 PM :

I don't know Dr Bach at all, nor do I know the people who are accusing him, so I won't comment on this particular dispute. But I would like to say a couple of things about these kind of accusations **in general**.

First, I think Lymies online need to be aware that the Steere camp have a regular tactic, which they have been using for years, of smearing our good doctors on the internet whilst pretending to be patients, in order to destroy them.

As some of you might know, we recently had a visit here on LymeNet from the hateful "Chuck Adams" of sci-med (aka "Charlie05" and a million other aliases), who is from the Steere camp.

Although "Charles" ditched his subtlety within the first 24 hours or so and reverted to type, insulting us, telling us Lyme is easily cured in 3 weeks, and calling the entire group "pyschiatric cases", at other times (and using other names) he and his cronies can be much more subtle.

A classic trick of theirs is to create several aliases (which may be all the same man) to descend on a newsgroup, each with their own horror story to tell about whichever particular doctor they have chosen as this month's target, in order to stir up trouble against him/her. They can then tip off the local press, forwarding them the internet posts, and let them know that "patients accuse Dr X or Dr Y of overcharging, deceiving his patients etc etc".

Again, I am not pointing the finger at anyone who has posted here. They may be genuine patients. I am simply warning people about this in a general sense.

However, I'd also like to say that while I understand why Tincup, you felt so disturbed to read the posts attacking Dr Bach, I don't really agree with your Mercedes analogy.

Lyme patients are not trying to buy luxury cars, but simply out there fighting for their right to be able to walk, talk, think and be free of pain.

If I am a rich person and I choose to buy a stretch limo, sure I'd have no call to complain about the cost, because I could have bought an ordinary car and got about just as easily (easier parking too )

But where the choice is between seeing a doctor who uses the proper, scientific approach to Lyme diagnosis and treatment (which is the ILADS one) versus seeing an ignorant doctor following the Steere camp garbage - I would not be "indulging" myself by wanting to see the Lyme-literate one in the same way the Mercedes buyer is buy choosing a Merc.

The Toyota-driver can "get by" with his Toyota, but I can't "get by" with wrong diagnosis and faulty or no treatment.


Of course no doctor should be taking advantage of the desperation of Lyme patients (and please note I am not accusing Dr B of this at all). There is no doubt that it does happen, and not just to us, but to AIDS patients, cancer patients, and many others.

On the other hand, I do believe that American LLMDs do have to reckon with much higher legal overheads than the average doctor - precisely because of all the false allegations made by the Steere camp against them. They are at ultra-high risk of being embroiled in false allegations.

I believe that the right to the best health that medical science can provide is a basic human right of all people. In countries like the US where the insurance industry, for the moment,virtually rules health, we need to win the battle to force insurers to cover the costs of proper Lyme treatment, and also ensure that people without insurance have their costs covered by government funds.

Here in the UK the National Health Service normally provides treatment free, at the point of care, to rich and poor alike. However, because our Dept of Health has adopted the Steere camp approach wholesale, what we are getting is garbage - but it's free.

The only way forward, IMO, for people living under either type of medical system, is to expose the deliberate corruption and fraudulent science of the Steere camp, so that insurers, health authorities and governments are forced to allow the Lyme-literate approach to prevail.

A group is now being formed to discuss the deliberate fraud of the Steere camp and what can be done about it. If anyone's interested in joining, please email me at lymerayja@xxxxxxxxxxxx

Lisa
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