I am now well enough to post this message of hope. I am from a below average income family upbringing. from the armpit of America. My Dad was a coal miner. My Mom worked 2 jobs as a seamstress; one in what would now be called a sweatshop. I elevated myself to a position of respect and a comparitively good job, wage, and subsequent pension. I was "Downsized" at the age of 51. I was fortunate to have made substantial inroads and contacts which led to a second career and passion as a proffessional flyfisherman, and vagabond. I chased fish from Key West to Newfoundland. The Rockies to Cabo. I saw many wonderous things; partook of many wonderous things and places,and met many famous/wealthy people. Many of which even said they would trade lives with me. For I had no stress in my life. I saw examples of wealth without limits. I was never envious of those things because I had no stress; the body & health of an 18 year old. I was living the life of a Jimmy Buffet in many paridises. I had all the "Toys".I lived in the shadows of lives and of homes which were the size of small town hospitals. I was in awe. How much money and power did these people have, I pondered. Fate brought me to be engaged to a woman who was by my standards, "One of those People" We lived in a gated, armed guard protected housing complex outside Summit, NJ. (Where so many of those wealthy people lived in "Lymelands" but worked in NYC amassing larger furtunes than the average person only sees in the movies and TV.) As an example: I was invited to a birthday party at the home of a man who; for his wife's 50th birthday party; had the original cast of "Cats" perform the play in his home. In awe? What do you think? I am now healthy enough to again live my passion again: chase fish on Long Island Sound. From Westport, CT to RI. From the water the view of many of the homes/estates boggles the imagination. Homes with 20 to 50 rooms at least. Protected by seawalls which must have cost more than the estate itself. Boathouses and "guest cotages" larger than most average homes from the city/suburbs where I was born. And here is the moral of this post. These people who live in an endemic area. One or more of their family has or will be bitten by at least one tick. The bite will go un-noticed. That person/relative/and God forbid; child or grandghild will become "Sick". Money will be no "object". I'll assume that those movers and shakers in positions of power love their family as much as I love mine. To imagin them suffer, and shuffel through the best medical specialists known. Does the average Lymie think that these peope of unemaginable wealth and power will blindly accept the "Status Quo" Answers of the MDs,and specialists from the whole spectrum of medical science; when they or a family member remains sick; worsens,and just doesn't get better? A few may. But it is my faith in God, and faith in the The american economic system which leads me to the following conclusion: Enough of these "People" of wealth and power, will force a change in the the way Lyme is viewed and treated. How long will it take? My guess is as good as yours. But faith and subsequent hope in America's economic system will finally prevail. They will make endowments. They will furnish grants. They will force a change in the way Lyme is viewed. Thank you for your patients. Thank God I;m well now for the past several months to partake in a "Normal" life. God bless all you sufferers, Buzz
Posted by momofthree (Member # 19490) on :
I am from one of those family and yes we are changing things. The hardest thing to figure out, when you are sick and fighting the medical world, is what are the priorities. It is hard to look at family friends who are doctors that are having trouble wrapping their heads around this.
I, now that I am well enough to think, have it broken down to this. Here in Green Bay, WI we need doctors. That means finding the right person who is willing to train and then finding out the steps to getting this done for them.
Next is turning one hospital into a supporter so when we are facing emergencies we have a safe place to go.
Third, but still possibly should be first, is helping cover the costs to get the research papers published. This is harder because the Lyme world is very individualized.
There is no one treatment protocol. Doctors go from ordering 50+ supplements a day, restrictive diets, plus regular antibiotics, to just antibiotics and low carb diets. This confuses potential investors.
Trying to talk to people when there is no centralized place to send them also presents a dilemma. I know CALDA is trying to raise funds for publishing. I never heard that before on any site just fell into the news. What these papers are about and if there are people with more urgent ones I don't know.
I am trying to compile a wish/need list for these three things. That is how the people I know who donate like to have things presented to them.
I also hope this wish list can be shown to other potential investors outside my area. Maybe if we Lyme patients work to comprise a donation want list it will be easier to raise the funds for whatever is most important.
Posted by dmc (Member # 5102) on :
I'm sorry can't read your post. You need to make short paragraphs. I saw the "chasing fish" and wonder/curious of the story.
When we neurolyme people look at you post we (me) only see a wall of black.
Normally I can break it up for others but I'm too tired. Can someone break it up for me.
Posted by buzzsflybox (Member # 26808) on :
DMC. I'm sorry you couldn't read my post. I have no Idea how to correct/modify it so it. IF you find/figure it out let me know please. Buzz
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by buzzsflybox: I am now well enough to post this message of hope.
I am from a below average income family upbringing. from the armpit of America. My Dad was a coal miner. My Mom worked 2 jobs as a seamstress; one in what would now be called a sweatshop.
I elevated myself to a position of respect and a comparitively good job, wage, and subsequent pension. I was "Downsized" at the age of 51.
I was fortunate to have made substantial inroads and contacts which led to a second career and passion as a proffessional flyfisherman, and vagabond.
I chased fish from Key West to Newfoundland. The Rockies to Cabo. I saw many wonderous things; partook of many wonderous things and places,and met many famous/wealthy people.
Many of which even said they would trade lives with me. For I had no stress in my life. I saw examples of wealth without limits.
I was never envious of those things because I had no stress; the body & health of an 18 year old. I was living the life of a Jimmy Buffet in many paridises. I had all the "Toys".
I lived in the shadows of lives and of homes which were the size of small town hospitals. I was in awe. How much money and power did these people have, I pondered.
Fate brought me to be engaged to a woman who was by my standards, "One of those People"
We lived in a gated, armed guard protected housing complex outside Summit, NJ.
(Where so many of those wealthy people lived in "Lymelands" but worked in NYC amassing larger furtunes than the average person only sees in the movies and TV.)
As an example: I was invited to a birthday party at the home of a man who; for his wife's 50th birthday party; had the original cast of "Cats" perform the play in his home. In awe? What do you think?
I am now healthy enough to again live my passion again: chase fish on Long Island Sound. From Westport, CT to RI. From the water the view of many of the homes/estates boggles the imagination. Homes with 20 to 50 rooms at least.
Protected by seawalls which must have cost more than the estate itself. Boathouses and "guest cotages" larger than most average homes from the city/suburbs where I was born.
And here is the moral of this post. These people who live in an endemic area. One or more of their family has or will be bitten by at least one tick.
The bite will go un-noticed. That person/relative/and God forbid; child or grandghild will become "Sick". Money will be no "object".
I'll assume that those movers and shakers in positions of power love their family as much as I love mine. To imagin them suffer, and shuffel through the best medical specialists known.
Does the average Lymie think that these peope of unemaginable wealth and power will blindly accept the "Status Quo" Answers of the MDs,and specialists from the whole spectrum of medical science;
when they or a family member remains sick; worsens,and just doesn't get better? A few may.
But it is my faith in God, and faith in the The american economic system which leads me to the following conclusion: Enough of these "People" of wealth and power, will force a change in the the way Lyme is viewed and treated.
How long will it take? My guess is as good as yours. But faith and subsequent hope in America's economic system will finally prevail.
They will make endowments. They will furnish grants. They will force a change in the way Lyme is viewed.
Thank you for your patients. Thank God I;m well now for the past several months to partake in a "Normal" life.
God bless all you sufferers, Buzz
Posted by buzzsflybox (Member # 26808) on :
Mom, Thank you for your input. Please let me share a tidbit I picked up from a presentation of the famous (And should be sainted) Dr.B. In a 2008 presentation he and Pamala W. gave at a PA function he noted/plead with victims & their families to plead to their Drs. that (Ibelieve)CALDA will PAY them to attend seminars, and become Lyme Literate. Yes I read Pam's book and it opened my eyes like a lightning bolt. (Fighting the medical world) was a good choice of words, Mom. I now understand why Drs are actually afraid to be "Known" as LLMDS. Even mine chooses to operate "Under the Radar" and wants to be known as a "Small time country doctor". Yep. I can understand you donation dilemma. Possibly you can check with Dr. B. I'm sure he may be able to recommend a recipient(s). Also maybe Pam W. She sure as heck knows of many reserch sites. Yep again to the "Protocol" delema. In my journey I've run the gamut it seems. I settled on ABX.......JUST ABX...... To hell with all those "Supplements". And apparently I was correct. And prior to typing it I know I'm risking a firestorm in expressing that I think that all the suppliers of RIFE machines should be arrested for fraud. They are (In my opinion) taking advantage of people who can afford it least: The sick and grasping at straws to rid themselves of their misery. And thank you for responding and furnishing another perspective. Buzz
Posted by buzzsflybox (Member # 26808) on :
Carol, Thanks for doing that for DMC. It only goes to prove what wonderful site this is. Thanks again, Buzz
Posted by janet thomas (Member # 7122) on :
I broke up buzz's post for those of you who need that, Janet
Hi Mom, Thank you for your input. Please let me share a tidbit I picked up from a presentation of the famous (And should be sainted) Dr.B.
In a 2008 presentation he and Pamala W. gave at a PA function he noted/plead with victims & their families to plead to their Drs. that (I believe)CALDA will PAY them to attend seminars, and become Lyme Literate.
Yes I read Pam's book and it opened my eyes like a lightning bolt. (Fighting the medical world) was a good choice of words, Mom. I now understand why Drs are actually afraid to be "Known" as LLMDS.
Even mine chooses to operate "Under the Radar" and wants to be known as a "Small time country doctor".
Yep. I can understand you donation dilemma. Possibly you can check with Dr. B. I'm sure he may be able to recommend a recipient(s). Also maybe Pam W. She sure as heck knows of many reserch sites.
Yep again to the "Protocol" dilema. In my journey I've run the gamut it seems. I settled on ABX.......JUST ABX...... To hell with all those "Supplements". And apparently I was correct.
And prior to typing it I know I'm risking a firestorm in expressing that I think that all the suppliers of RIFE machines should be arrested for fraud.
They are (in my opinion) taking advantage of people who can afford it least: The sick and grasping at straws to rid themselves of their misery.
And thank you for responding and furnishing another perspective. Buzz
-------------------- 5 yr. Vet. of the Lyme war. Helping and sharing are now my only objectives.I have nothing to sell & I no longer interfer with things I cannot control. But, I have learned many good things from my affliction & am a better person for it.
Posted by lou (Member # 81) on :
I think we need a coordinated strategy, which is hard to do when our doctors are under siege, journals won't publish their work, and we are so sick. And there are divisions in the lyme community.
However, people are trying to do things, and can be helped. They are trying legislation, working thru legislators to try to get at federal and state public health agencies who are getting it so wrong, and there are groups who are funding research, like Time for Lyme.
So, anyone with money and influence has several ways they can help now.
But I am guessing that not all of these people know they have lyme. If well trained doctors who get lyme can't figure it out, how are others going to get it right, especially when the big name medical institutions and doctors are telling them something else? An editor on a well known online magazine has been on a radio program dissing lyme patients who he thinks misled him, and meanwhile he is still sick. So, people who are smart in one area are not necessarily smart in every field. And they have been trained to obedience to medical people. How did we get to be such sheep? Probably because science backgrounds are rare in the well paying fields, so they just aren't prepared to think for themselves in such an unfamiliar area. Well, getting off on a tangent here.
Maybe if those who are in such groups spread the word and help educate folks? And direct them to those who are already trying to change things and need help.
Then again, sometimes people in those groups do not want their illnesses made public, because it could have career consequences. If they want to stay below the radar, they can still help quietly. To whom much is given, much is expected.
Posted by buzzsflybox (Member # 26808) on :
Lou, Thanks for your comments. You too "Janet" Wink. Buzz