Doctors: Number one reason why Lyme patients get so sick!
Doctors are the reasons why so many of us here are as sick as we are.
Doctors just don't get. Don't want to get. And have thier heads buried so far up thier own %*&^* that they can't see they are distroying more people then they are helping. Thank God for LLMDs!
Almost everyone I've met has been misdiganosed, or mistreated one way or another.
Can't believe how quite this disease is, and at how it continues to run rapid with no one really screaming about it. Yes we are hearing about it, but in the same breath more and more people are being mistreated.
I blame many of the ill people on this site, as being so ill, because the doctors in the USA are dropping the ball...
Hope soon to hear some good news. Like they understand that with Lyme long term antibiotics are a good thing. Good luck to all. But as I read the posts here, the only clear thing is, doctors are fools when it comes to Lyme!
I saw over many years maybe over a hundered doctors before I was diagnosed. Remember now I had all the tell tail sysmptoms that point right to Lyme, yet no doctors could see it at all.
Re: Doctors: Number one reason why Lyme patients get so sick!
Hi Ekim,
I'm sorry you feel that way. I don't buy into the blame game, it's a waste of negative energy.
I feel that it's up to the ill people to make our voices heard as a big portion of this disease is political, especially the CDC. I believe it is our responsibility to write and call our congress people and tell our story.
Don't forget, there is a Lyme Bill sitting in Congress as I write this. Have you called your senators and local government people? I have.
Almost everyone I talk to, I educate them about Lyme Disease (not only in the USA, but Canada, Switzerland, Australia, the UK and more as I have international friends) as I feel the more people I can educate, the more word gets around. It's like playing the game "telephone".
Interesting, one of my friends in Switzerland asked me if I could help a friend of hers who has Lyme in Florida and we connected and I have helped her. This disease is my passion.
I know deep in my heart that one day soon Lyme will be BIG NEWS. But instead of sitting back and waiting for that day to happen, we have to help it along. I feel that is our responsibility to ourselves and to others.
As far as doctors "not" getting it, I think many of them do get it, but there's no money in it for them as you know that insurance companies don't pay them. I agree with you, thank God for the LLMD's who risk their licenses helping others.
Remember, these doctors also go by the CDC guidelines which is so outdated.
Re: Doctors: Number one reason why Lyme patients get so sick!
I disagree with you.
Doctors in most cases don't get it, and nothing your going to say will change my mind. I've been to many doctors, and out of many years of doctors only one got!
I do write all the time. I am a member of my local Lyme Group, and I also spread the word about Lyme.
But it must hit the news and talk shows for there to be any impact at all. Other wise most people your speaking to will think you are nuts about Lyme.
Good luck, and I have my faith right where it belongs...
The Following User Says Thank You to dealer1111 For This Useful Post: JAYME22 (04-04-2012)
Re: Doctors: Number one reason why Lyme patients get so sick!
Hi Ekim,
It's fine to disagree, that's what makes the world go around.
I also saw at least 100 doctors if not more during a course of 5 years before I was diagnosed. Actually, I diagnosed myself and had to get a doctor to believe me. So thanks to a nurse that I sought out who saw my spirochetes underneath a microscope and getting my blood sent to Igenex, I would still be out there seeking more doctors.
I will only say this: if doctors knew they were going to get paid by insurance companies, I believe there would be alot more LLMD's in this world. Believe me, they would get themselves educated real fast!
Money talks and most doctors are greedy in my opinion.
Re: Doctors: Number one reason why Lyme patients get so sick!
Ekim
I got a thank you card from Dr Jemsek this week. Thanking me for my letter of support. He mentioned the possiblility of an open hearing and said he would let me know if there was. That may be one way we can have our voices heard.
I agree that most drs have that know it all, you don't tell me nothing attitude. They do not want to treat lyme because of what the CDC says. They know the insurance will be a big problems.
I was reading a post of yours from about 2 yrs ago with the CDC. You and Tin were talking. You had contacted CDC and talked for an hour. Has anything good come out of that conversation. Has there been any changes to CDC views on lyme.
Re: Doctors: Number one reason why Lyme patients get so sick!
Ekim
Maybe Helping Jemsek fight is our fight to. I'll let you know on the hearing you want. He did mention the first possible day in April............
Take care Ekim. Hows the wife? Prayers..............Marsha
Re: Doctors: Number one reason why Lyme patients get so sick!
Please ekim I feel your frustration, but let's stop with the negativity! I like this website over other lyme sites because people here are positive and trying to get better. That is personally what I think we all need is a positive attitude. The situation is what it is. I choose to believe that most Dr's go into medicine because they want to help people. The problem with lyme is that treatment invovles long term antibiotic use and long term antibiotic use does cause problems. There are now strains of antibiotic resistant bacteria that have the medical community very concerned. Every time you take antibiotics long term you run the risk of building resistance in yourself as well as those who share your home with you since they are being exposed to the supposed resistant bugs now as well. Also, there is the issues of resistance to antibiotics in the face of bioterrorism. So I don't think they are out to get lyme patients. It just is what it is. I think all these Dr's telling those of us with lyme or something "lyme like" that we don't have lyme deep down inside know that we do, but their hands are tied and they are afraid of losing their medical license. I agree that it is important to get the word out to legislature an lobbyists, so lets just focus on that aspect and not be negative.
Frango
P.S I am not a medical professional, but I did stay in a Holiday Inn Express last night.
Re: Doctors: Number one reason why Lyme patients get so sick!
Your missing what my point is. It is not the antibiotcs I am speaking about. Just to get a diagnoses is very hard, due to doctors and many don't believe there is a real Lyme problem.
It seems like everytime I here from someone new to this board they have been mistreated or misdiganoses this is all I am saying. This leaves many in a much worse shape then if a early diagnoses was found.
Sorry you see it as Negative I never did. What is negative to me is still the medical community is for the most part lost with Lyme. Can't get the same anwers twice from most doctors.
Re: Doctors: Number one reason why Lyme patients get so sick!
The doctors, CDC and insurance companies all are to blame.
Ekim I understand what you are saying. When you live in a state that is not a hot spot, (per CDC as I do in NC) then doctors tend to want to say we don't have it here so it can't be lyme. They also rely to much on inaccurate blood test. They don't know all the facts and as my MD told me, He had enough to learn just to treat the regular stuff. He would leave lyme and the co infections to experts. And how many of those do we have. In NC one.
Prayers.....Marsha
Re: Doctors: Number one reason why Lyme patients get so sick!
You have hit it right on the head.
Example:
Every doctor for years that misdiagnosed me all did the same thing. I went in. Answered a couple quick questions. And they did test. All kinds of test and they stuck me everyway you could be stuck with everything.
And not one could figure out what was wrong. Nero, Allergy, This that, and all of the kings clowns, couldn't put 2 and 2 together.
The doctor that got it right and saved my life took ONE HOURE with me the first appointment. Didn't run in and out. Spoke to me, listened, and diagnosed me, and started treatment with no tests! AND HE WAS RIGHT!.
It was expensive, he told me he can't take insurance due to he would have to see at least 40 patients a day. He is from Europe, and likes to learn about his patients. And he told me he couldn’t afford to take insurance and meet their criteria. He said he thought they were crazy, and could never see as many patients as they where asking, hence this is why he does not take it.
My doctor did do follow up blood work. I have come back negative and positive several different times. A doctor needs to be able to spend time with a patient, other wise he is just guessing quickly and jumping to false conclusions.
I think the biggest problem is that Doctors are so thick headed. They think they are Gods many of them, and then there are the ones that flex to the turns of life, the good doctors. But most are trained by the drug companies how to write a fast prescription, and hand you a pill. This is what best drives the life styles of all that are making money on it. For those at the bottom of the chain, it is clear there is corruption here. Especially if you are sick and stuck in the system.
Re: Doctors: Number one reason why Lyme patients get so sick!
what were your symptoms over that time frame? i too have seen tons of doctors and had test after test without any overall improvement.
Quote:
Originally Posted by ekim1111
Doctors are the reasons why so many of us here are as sick as we are.
Doctors just don't get. Don't want to get. And have thier heads buried so far up thier own %*&^* that they can't see they are distroying more people then they are helping. Thank God for LLMDs!
Almost everyone I've met has been misdiganosed, or mistreated one way or another.
Can't believe how quite this disease is, and at how it continues to run rapid with no one really screaming about it. Yes we are hearing about it, but in the same breath more and more people are being mistreated.
I blame many of the ill people on this site, as being so ill, because the doctors in the USA are dropping the ball...
Hope soon to hear some good news. Like they understand that with Lyme long term antibiotics are a good thing. Good luck to all. But as I read the posts here, the only clear thing is, doctors are fools when it comes to Lyme!
I saw over many years maybe over a hundered doctors before I was diagnosed. Remember now I had all the tell tail sysmptoms that point right to Lyme, yet no doctors could see it at all.
Re: Doctors: Number one reason why Lyme patients get so sick!
Hi guys,
I too want to believe that doctors go into the profession to help people but there are a number out there who are specialists and have tunnel vision. My neuro, opthamologist and MS specialist all told me that valtrex would not cause me to lose my vision. This was after taking 2 pills. I had not changed one bit in 18 months but nobody had the time to look it up or talk to a pharmaceutical rep. Instead I was loaded with IV steroids and my life has been downhill ever since. The doctor's nurse could have called if he didn't have the time and guess what, I found an article in an ad for valtrex that says this can happen on rare ocassions. That would be me. So you can imagine how angry I am that my life for the last 5 years has been taken away from me. I don't dwell on it but it is sad that there are some doctors willing to go the route and others who can't be bothered. As my husband says "It is the bottom line with some of them". I do focus on the positive because I know the negative gets me nowhere but I have learned a lot over the past 5 years and the best thing I have learned is that I am my own best advocate. Nothing goes in my body that I don't research now and it is a shame we all have to be that way.
Re: Doctors: Number one reason why Lyme patients get so sick!
I agree with you Ekim, I personally don't find it negative, I think a little outrage at how the Dr.s are mistreating/misdiagnosing us is a good thing! And I for one am outraged when I think of how many ppl re having there health and lives ruined becuse they are niave enough to believe what the doctors tell them!
Also can I get the info on of open hearing? I would really like to help Dr. J out as well.
Re: Doctors: Number one reason why Lyme patients get so sick!
Oh goodness,
Here we go again with the "blame game" and I do find it a "waste" of "negative energy".
Doesn't anyone see the big picture? It's not as simple just to blame doctors, it is so much more complex than that. It's like the "Domino effect".
So let's start where the "real" problem starts. And that is the Center of Disease Control (CDC) that has outdated guidelines that doctors follow to be on the safe side.
The next step is Insurance Companies. They do not pay Lyme Doctors because of the "outdated" CDC Guidelines.
The last step is the doctors themselves. If they were covered by insurance, believe me, they would get themselves educated real fast about Lyme Disease, but why should they bother?
They are not going to get paid. Why should doctors put their licenses on the line when they can get away with telling people they have MS, CFS, Fibro, and the list goes on.
Ekim, I am sorry to say this, but most of your posts are negative. I feel sorry for you, I truly do. Do you ever post anything positive? I rarely see those posts.
Blaming people is the "easy" way out in any situation in life. I could go blaming my family forever but I choose NOT to. What good does it do me?
Everything in life is a choice. One can choose to think positive and take positive actions, or one can dwell in negativity and get lost.
Half of the battle against Lyme Disease is positive thinking and blaming doctors is NOT positive.
Re: Doctors: Number one reason why Lyme patients get so sick!
I spoke with the CDC they say its up to the doctors to rewrite the info on Lyme. And many doctors think Lyme is not real. As long as the doctors don't think its real the CDC has nothing to do with it.
The CDC makes its system through feedback from doctors. Doctors are not giving the correct info to them. Call the CDC speak with them. They seem friendly and willing to share info.
They have no stated policy for Lyme at all, its a guideline that is up to each doctor to interpit the way they like.
I don't like blaming anyone. But why do some doctors get it, and others don't!
Its simple some are smarter then others and listen and learn while others just read and follow books.
Sorry you find this negative the reason for the post was because I am reading repeated story's of nightmares with doctors, not the CDC.
And if someone dosn't compalian and speak up we all we be in wheel chairs in the years to come.
My life is getting better due to two doctors out of the hundereds I saw of the many years. Most doctors are trained by the drug companies reports. You ever notice there are less cures and more pills to take everyday to control what ales you.
I am sorry its not the CDC at all here. Its the full medical community. Doctors are calling the few doctors that get Lyme right, -quaks?
To me something is wrong and its not the governments problems to police what is going on. Its the peoples. And if we don't start pointing fingers at the one that are doing pointing the fingers at the doctors that help us, no not ever a God will help you get through this.
Thank God for the few people that march, speak up and write letters. And for all of those that just wait for the CDC to change things, good luck to you guys also, your going to need it the most...
Read the postes here. Its repeated. Doctors failed me. Doctors are failing me. Doctors charged me money and did nothing. Its on and on. And I am firm with this. From experience Doctors will not help those that don't help themselves. They will give you a pill and get you out the door as fast as they can.
For me Doctors are the number one reason why my life as been altered the way it has been. They had 20 years of strong symptoms yet they mostly thought I was causing all of them in my head, only becuase what they can't fix you must being doing to yourself. This is the same attude that killed my mother at age 50. The doctors distroyed her life for many years, to the point where she decided to stay home and die instead of having one more doctor tell her she is nuts and nothing is wrong with here.
Some times people follow people, and others lead. For those that follow with Lyme they don't do good. For those that are open and listen and fight. These are the people I see getting better.
If its only positive you want to here go back to your fairytail land, becuase in the real world only negative gets things done. Sorry but what one sees as negitive others see as speaking up.
Re: Doctors: Number one reason why Lyme patients get so sick!
Hi Ekim,
I do understand where you are coming from, but I am not going to waste my time on the 5 years when I saw over 100 doctors who were of no help to me.
You stated that you have spoken with the CDC, have you spoken to your Senators and Representatives about the Lyme Bills? I would be interested in hearing about that.
I do spend my energy on being positive and from a person who had lost the use of her legs, I am doing great! No wheelchairs for me thanks to my positive thinking and having an open mind about my own personal choice for getting cured.
I am sorry about your mother, I am sorry that your mother made the choice to give up the fight.
As far as the "real world", I am constantly in touch with my Senators and local government people. I am still following Dr. Jernigan's protocol and getting better every day!
What is most important is for every Lyme patient to contact their local Senators and Representatives.
The 2 Lyme Bills sitting in Congress are called H.R.3427 and S.1479.
I urge all Lymies to either call, fax, or email your Senators and Representatives today.
Tell your Representatives in the House that you strongly support H.R.3427 and you’re counting on their support. Also tell your Senators that you strongly support S.1479.
S. 1479 is a Senate bill, indicated by the "S." before its number.
A bill is a legislative proposal before Congress. A bill must be passed by both the House and Senate and then be signed by the President before it becomes "LAW".
If everyone would support these bills, it would authorize an additional $100 million for Lyme disease research, education and prevention over five years and provides goals which address the issues surrounding Lyme disease.
LDA (Lyme Disease Association) President Pat Smith has said that these bills are outstanding pieces of "legislation" that addresses chronic Lyme disease, an area often neglected by government and physicians alike.
Ms. Smith goes on to say that now we have the same legislation introduced in both the US Senate and US House of Representatives with a comprehensive set of goals designed to help Lyme patients receive early diagnosis and appropriate treatment and to help in the development of education and prevention programs. As a result of the introduction of the bills, we are one step closer to realizing a "Federal Law" for Lyme disease.
Ekim, you know about Amy Tan.
Ms. Tan has stated “Research is our war plan against Lyme disease. It is the only way we will be able to detect, combat, and destroy a bacterium that has spread to nearly every state in the union.”
Ms. Tan goes on to say “As yet another patient with Lyme disease, I personally look to these bills as my hope for the future”.
"For the rest of this country, this bill represents the first reality-based plan for dealing with an epidemic that must be stopped."
So once again, I look at the entire picture as I take pride in "not" wearing "blinders".
Go ahead and keep blaming doctors, that's your choice and I am not arguing with your thought process.
I am simply stating what the "reality" of it is and how every one of us can make a difference not only for ourselves, but for all the new people who are finding out that they are infected with this disease. There is power in numbers.
Re: Doctors: Number one reason why Lyme patients get so sick!
Denise:
Well said, you are a class act. I am going to contact my Senators and Representatives and ask for their support of these bills. Thanks for the information. It is people like you who are going to help change the way this disease plays out for the next generation. I am going to take proactive steps like you are to make myself better and help others. I do not choose to be bitter and wallow in "what ifs".
Re: Doctors: Number one reason why Lyme patients get so sick!
Hi Frango,
Thanks for your kind words. Do you remember the film "The Shawshank Redemption?"
I remember a scene from that film when the character Andy Dufresne (played by Tim Robbins) wanted a Library in the prison. All the other inmates laughed at him because Mr. Dufresne sent a letter every day to get books.
As you probably know, he got those books and opened up a Library.
I try to call everyday and I don't think once is enough. You should see my e-mails to Senator Clinton! I think you would be laughing as I am persistent.
Then I started to call because my e-mails were being ignored and I didn't like that. I think Mrs. Clinton's office is getting tired of me and wishes that I would just sit on my "arse". Then there are the local government people here on Long Island that I am in contact with.
There's so much more but I don't want to say anything about that right now.
To crawl under my blanket and hide from the world wouldn't do any good, I want my voice heard.
I smiled at myself when I was settling one of my debts as I told the guy I was speaking with about Lyme Disease. He told me that he lives in Iowa and called "Lyme" a huge epidemic in Iowa! Everyone I talk to I manage to get in the words "Lyme Disease" as I feel the more people I touch, the more aware they become.
Many people I talk to never even heard of this disease and if they are willing to listen to me, I give them the best education I can.
Funny, I joined a knitting site and when I introduced myself, I mentioned that I have Lyme and another member mentioned that she had Lyme for over 20 years! So we got to talking about that, besides knitting.
The world is a big place and I feel that the more "Voices of Lyme" that are heard, the better off we are.
So don't give up on calling and writing letters. If Andy Dufresne can send a letter every day, we can too!
