posted
Even though i am new to this site i am not new unfortunately to this disease. I have been sick for over 5 yrs.
My idea is this. We should lobby to congress to get primary DOCTORS TO BE ABLE TO TREAT LYME.
Why is it that only llds can treat it and others cant? This does not make any sense to me at all. The only difference is that these llds have studied about lyme and how to treat it.
This is EPIDEMIC IN THIS COUNTRY. We are not treated fairly by any means. LLDS have created a monopoly..ok some not all this is true...but most llds want you to hand over a bunch of $$ and then some people arent even better!!!
Please give me some feeback on this and i cannot fight this thing alone. I will need ure support and we can fight for primary docs to treat people with lyme and/or to treat people that have the symptoms of lyme .
Posts: 92 | From bethel, ny | Registered: Jan 2009
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posted
what im saying is that PRIMARY DOCS should be required by law to treat people with lyme disease. This would be affordable to all people then.
This isnt fair that the LLDS Aare laughing all the way to the bank while e are suffering!
IT S REALLY A SIN how some llds want you to fork over an obsurd amount of $$ when there is really no guarantee.
what im trying to say is that ANY ONE can go to med school, become a regular doctor , study lyme and say they are an lld!
LLds are not surgeons!!
they are no differnt than a reg primary doctor...they have just studied moe about lyme etc.
so please please i beg of you please lets do this now!!i do not no where to start but please lets all join together on this one.ill be anxiously awaiting your response!!!!!
im sorry if i reiterated...but i no that we can do this...PLEASE BACK ME UP THATS ALL I ASK!TY
Posts: 92 | From bethel, ny | Registered: Jan 2009
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posted
Look, I am willing to do almost anything to get Lyme folks to get treatment. However, I think with the testing we have available, the doctors are still going to say, you don't have Lyme.
I had my blood work done at Igenex, I am CDC positive for IGM and one band short of being CDC positive for IGG. The Infectious Doctor did a test, that said I was negetive for both!!!
I mean not only do we have to fight to get better testing, but we also have to fight to get long term antibiotics approved as a treatment...none of this is simple!!
I wish it were. I would love to not have to drive 17 hours to get treatment from and LLMD, but that is what I have to do.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
R u jewish? me 2...no none of this is simpleand thats what i dont undersand...why ? it shoud be..this is the ony disease that we have to fight to get treated?can u name me another disesase..i cant think of one...
U R 1000 PERCENT RIGHT... about the docs saying we do not have lyme..
im sorry u had to waster ure time with an infectious disease doc.
i went to three.they will never say u have it or an RA ..
this is turning into a monopoly for the docs that do treat it dont u think?
well thats what i want to lobbby to congress for ..
There are people that have gotten better with tx .case in point..how can the ducks(non lld) argue with that?
If somthing isnt done soon i will prolly end up on the 4th flor of some hospital Posts: 92 | From bethel, ny | Registered: Jan 2009
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posted
It would be lovely if primary docs would treat for Lyme. Unfortunately, at the moment, they follow the IDSA guidelines and the crummy tests--so the primary docs just say "no lyme." end of story.
I share your frustration about how difficult it is to get to a LLMD--with high out of pocket payments and usually long-distance travel as well. But believe me, it's not the LL docs who are the problem here. The LLMDs are bucking long odds--and risking a lot--to try to help us.
Posts: 991 | From California | Registered: Feb 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo no mo no mo...
Nice to see you are interested in activism.
You said.. "My idea is this. We should lobby to congress to get primary DOCTORS TO BE ABLE TO TREAT LYME."
Just so you know.. they CAN treat it. They just won't.
Few barely know what a tick is to start with (many foreign docs from other countries- many have never seen a tick).
Few bother to read past the score card on their golf carts. I've been told by ducks they DON'T WANT to learn past school (some haven't been in school for years)... because they are "too busy".
Others have an insurance based practice and are specifically TOLD not to treat it or risk $$ in their pockets.
Some know there is a problem... but have been threatened if they treat they would lose their ability to work out of hospitals, certain practices, etc.
Some don't want to risk their licenses because the IDSA claims to have THE standard of care... and if they don't follow those INSANE rules.. they could.
Some put their pocket book before the welfare of patients....
And some are just plain old ordinary stupid.
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You said.. LLDS have created a monopoly..ok some not all this is true...but most llds want you to hand over a bunch of $$ and then some people arent even better!!!"
LLMD's, because of the current IDSA situation, medical boards and insurance idiots.. CAN't take insurance.
They also have to be prepared to pay lawyers... some actually have to have them on retainer just to keep their door open to the public so they can treat Lyme.
They spend MUCH more time with their patients.. not the 7 minutes allowed by insurance companies.. so their fees are higher.
Blah blah blah.
There is no monopoly. I don't know ONE LLMD that wouldn't LOVE to have it so all patients can be treated at their regular doctors and be treated properly.
Most would LOVE to have a regular practice that is not filled with complex, highly confusing and desperately ill patients like us.
Again, there is no monopoly.
If you'd like to change this situation or help others do so... please take time to review the history and get a true feel for the problems out there.
BTW- you might want to jump in to help with the CT bill for now. Should be an interesting lesson... and we could use the help.
AND.. don't stop trying! As you can see... this whole situation sucks. We need ideas and help!
posted
Thanks for our response.. I am not doing well these days and maybe i did not use the term well "monopoly.." ..
I am just so frustrated with this illness. I am grasping at straws here.
My idea is this. I realize that ducks will not treat for lyme etc. but we can lobby to congress for them to be required by law to test for lyme and rx. etc and do the extra studying.
I think this is the only way to settele this epidemic. this way people can get the treatment they need etc and now with the economy the way it is ..
how many more people are going to suffer without treatment? ok just my two cents.i want to make a difference and if i cant get better i can help others to put an end to their suffering.
so u think that this is all about insurance companies?still there should be definitive test to test for lyme, be treated and be done with it like most diseases.
this is the only disease out there that people have to fight to get well which doesnt make sense to me.
then have a doctor look u straight in the eye and say"you dont look like ure in pain" ( do u no how many ducks have said that to me?)
..
i was on the phone with a woman from the health food store last nite and she said in bruhners book that lym is sexually transmitted? i dint think so..hmmmm.any thoughts on that one?
Posts: 92 | From bethel, ny | Registered: Jan 2009
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posted
Hello again. Hi, Tincup!! Nice to hear from you!!
We are all upset with the lack of treatment for lyme people. (Really non treatment). I think each lymie does what they can, when they can. It is good to have forums like this sharing information about the current lyme bills being passed. I also wrote a letter to all of my representatives. I just found out about my lyme 4 months ago. I do my best to tell everyone I know about lyme and the issues we face. I have met a lot of people I think have Lyme and I try to educate them. Most think I am crazy. Those are the things I can do.
And, I can truly empathize with the injustices going on. I spent tons of money and time trying to find out what was wrong with me. Chronic Fatigue and Depression were the answers I was given, which to me was nothing. I wanted hard core results. No doctor ever mentioned the possibility of Lyme. I had never heard of Lyme. So, that is my goal, to tell people as much as I can about it. That way if they feel poor, they might consider the possiblity that they have lyme a lot earlier than I got to think about it being a possibility.
I think that fixing the Lyme problem is so big that not just one change will be enough. We have a lot to change.
1st - Drug companies don't want people to get better. If we suffer, they make more money off of us in the long run.
2nd - Nowadays, only a few doctors are doctors because they want to "help" us. They are in it for the money. So, they don't want us to get better. Shoot, we are destined to have heart trouble, arthritis, diabetes, and nuero problems. If we get better off of antiboitics, the doctors loose long term wealth.
3rd - Insurance companies try to get out of paying anything they don't have to pay. Spending a little more now, to get us better is beyond them. They can't see that it could possibly save them millions in the long run. They don't care. They try to save $5 today, vs. $800 down the road. Point in case, they won't pay for birth control pills, but if a woman gets pregnant they have to pay for the OBGyn doctor, the labor and delivery, and then there are the moneies spent on the child after birth!! To me it is a no brainer.
4th - I could keep going on, and on about the problems associated with what all it would take to "fix Lyme". The food industry doesn't want us to get better because they make the most money off of food that is completely horrible for us. Chips, soda, fast food.....
So, with all of the above mentioned, that is where the money in our system lies. With the pharmacuetical companies, insurance, and the food industry.
The sad part is with all of the socialized medicine coming, I only see the problem getting worse, not better. Is it fair that I have insurance and have to drive 17 hours away to get treatment for a disease hardly no one believes in, NO! Is it fair I have to pay out of pocket, NO! But, I am just glad that I have that option. The folks over in the UK don't even have those options.
But, I will fight all the obstacles in my way to fight Lyme. I will help all the people I can to get diagnosed, informed, and then better. I will continue to look for my own ways to "make things happen".
My hat is off to many folks who are on this board helping us start our recovery to getting better. Because they were there to help me, I am down in Florida (NOT Lyme Area) trying to help others.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
Thanks so much for your response. first of all....i read every word that u wrote and it seems to me that this is a conspiracy!
I am not the paranoid type but the government is resp for all of this no?
If we wanted to make this a strong country as far as obesity goes, i feel that all fruit ,veggies, and meats should be free to everyone.
I know that im living in lala land about that one but when i ate right (ant that is expensive to do!) i felt so much better!
When i was eating healthy and i slipped for a day or so and ate out at a fast food and had even one french fry i felt sick.
Posts: 92 | From bethel, ny | Registered: Jan 2009
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posted
So where do we statt? where in fla are u....i no of a lyme doc in naples...or around there. Im from ny and i think i have been sick with this for a long long time but i dint no.
there are deer all over here and in my backyard.
my dog died of lyme..he was 15 but i think he would have lived alot longer.he was a chow chow..
Posts: 92 | From bethel, ny | Registered: Jan 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
No mo... ho ho ho... Love your name to play with... HA!
And Need Lots.. you cute thing you!
I would be VERY upset if you both weren't out there thinking and trying. Thank you so much for that!!!
It is beyond me why some people just go for their own end goal and disappear, never trying to change this sucky situation for others after they get help. So your efforts and concern are appreciated by me and so many others.
Please understand this. I LOVE seeing ideas and what folks want to do. I love it!
The ONLY reason I comment on the ideas is to HELP individuals in their actions to not spin their wheels and so they can benefit by knowing what has been tried and what has or has not worked in the past.
If I had a nickel for every time I tried and got no where.. or watched others do the same... I'd be a billionaire by now.
I wish I had someone years ago to give me a heads up on what would work and what wouldn't and why. Many of us individually tried many things.. duplicating efforts, unknowingly, that have failed and some that have been successful.
For example... When I started out...
I had NO political knowledge. I had NO medical knowledge of Lyme. I had NOTHING but a big fat problem and no one to help.
Because I have stumbled through just about everything I could come up with for over 20 years on this situation... I know when a brick wall will be hit... NOW... because I've hit them all and also since learned why they are there.
Imagine 18 years ago not knowing the IDSA even existed much less had patents and research billions invested in this situation.. and THAT was why I was not getting the right help no matter what I did. For years I just thought all doctors were stupid!!!
Now I know some are stupid, but the ones holding the ropes and keeping us down are just plain evil. They DO know better.
Imagine 1,000 more patients also going through learning the hard way what was going on.. on their own.. in their own states and their own home towns... with little to NO help from anyone.
We all worked ourselves to death trying to help our families and ourselves and our neighbors just to stay alive... and had NO science behind us... and only a handful of doctors thinking about this situation, who we didn't even know existed.
Today it is different.. thank God- and I mean that... or many of us would be dead by now. Unfortunately, many have died because of this horrible situation.
This is a new area for ALL of us. There are no rule books to read and no one with needed experience dealing with this who have come up with this same situation before, and who are willing to guide us.
We are on our own. BUT..
Today we have a large network of folks who care. You both are one of them now and I am so happy that you are trying to make a difference. Bless your hearts.
I can NEVER tell you or anyone what will work to change our circumstances. Neither can anyone else. So all ideas are welcome. IF I see you getting ready to head down a path that will be a slow road to hoe (because we've been there) or a brick wall (cause we've hit it)... I hope you won't mind me sharing that with you.
It IS after all, to save YOU time, effort, energy and money. It is NOT to deny you the right to do as you please as some would suggest.
A few unpleasant people like to say we aren't going the "right route" when trying to help our own situation .. but there is no "right route"... or easy fix.. or we would have fixed it already.
And of course the nay sayers are totally non-productive themselves and are just sitting on their cans waiting to see what we try next so they can start their bash fest. They appear to have no heart and no true willingness to help anyone, including themselves.
You'll notice they kick volunteers in the head at every opportunity and you may be in their line of fire at times (so do be prepared).. but NEVER have they accomplished anything themselves. They live to be hateful and negative and wallow in it. And they contribute nothing.
Sooooooooooo...
What we can do is all try to work together with those who have been through this ordeal in the years past and those who bring a lot to the "thought table".
For example, I knew NOTHING about politics.
Had I just tried to fumble my way through on my own... I'd have quit or would still be saying.. well, how do you put in a bill .. and what is the difference if it is a Republican leader or not? etc...
Thankfully we have folks who know politics now that are helping us. We have highly trained medical people to consult with and researchers too. We even have legal folks who got Lyme and who volunteer to help us all.
There are advocates, patients, veterinarians, military people, researchers, organizations, scientists, politicians, moms and dads, media people, teens, business owners, etc.. who all have a stake in this situation. They all volunteer or choose to help us win this battle so we can eventually all go to a local doctor and get help. That is our goal.
So please keep thinking and do what you can. It warms MY heart to see folks that care. I know we have hope when you and others make an effort to learn and step up to the plate to help.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And Need... did I see somewhere .. an email or post.. where you asked where I was in FL? So sorry.. I have had several hundred emails in the past few days.. and am getting burned out and lost.
If I didn't respond.. please let me know. Just knock on my head if that happens and I will take note. I need reminders much of the time.
posted
wow THANKS FOR THE LONG RESPONSE!!! and ty for thanking me for caring..lol...
.i know there is a lyme doctor in fla but i forgot where he is.
How long have you been sick?
The worse part for me is this brain fog.
iF IT WASNT FOR THAT I THINK THAT I WOULDNT BE SO SO SICK..THE BRAIN IS VERY POWERFUL..
please read my post in general support under lyme vs working a job...i have some ideas.
but this whole thing comes down to the almighty dollar..
well now that we have a new prez , maybe we could get somewher to lobby to congress or the senate for chronic pain patients to get better treatment or more $$ from the goverment for the expenses we have to pay to travel, etc.
I lost everyhing to this disease..im telling you.I try to be in denial because if docs are saying i do not have it then where do i turn..get back
Posts: 92 | From bethel, ny | Registered: Jan 2009
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Yes, I wanted to know where in Florida you were. Maybe you could PM me about your doctor and the things you have tried healthwise that have worked.
I did hear there was a doctor in Naples, but I did not know anyone who had been to him with good results. I talk to Sandy who heads the LifeLyme group in Tallahassee, Florida and she goes way up north for treatment.
I am in such a bad way, that I would rather drive to a doctor who I know believes and is willing to help me, vs. another one who takes 3 more months of my life to tell me that I don't have Lyme..... ugh!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
NEEDS PLEASE TELL ME YOUR STORY? i was in a bad accident at first thats how it all started for me!!!
Posts: 92 | From bethel, ny | Registered: Jan 2009
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Since I am always happy to talk about myself, I will go ahead, just in case you want to know about me!!
I am 36 years old. I have known since I was in second grade that something wasn't right. I had trouble in school that year, I started popping my knuckles because my joints hurt, and I still had issues wetting the bed.
Along with that, I got car sick and began having headaches that wouldn't go away. I am sure everyone thought that because I wasn't doing well in school, and my mom and dad had split up, that I was just having internal issues of sorts.
I was also sleep walking and talking. Plus, I did not want to obey at all. I was defiant.
I think my family would have loved to give me away if they could!!
Somehow I picked my grades up because it was very important to me. I wanted to make good grades.
It got very obvious when I was in junior high school that I was more tired than the normal person. I actually failed my junior year because I missed too many days. I had A's and B's. But, I was at home sleeping. I also got a lot of sinus infections/bronchitis, and ear infections.
It seemed like I was sick all the time.
I never really went to the doctor until I was 19 and I married a military man. The nuero said I had migraines, you guess? No medicine ever worked. I would hide in a dark room, no light, no smell, no sound, until I began throwing up. After that, I would feel better. But, sometimes it would take me 3 days to get to the throwing up stage.
So, when I went to the doctors at that time, I always said my main concern was migraines. Period.
I was working waiting tables at night, and I could handle that because I could sleep in late and work late. That schedule seemed to work ok for me. I also pushed myself to exercise 4 times a week.
When I got a real job, 8-5 in an office I got worse because I could not wake up in the morning. I got fired from 3 jobs because I couldn't make it to work. And, I needed the money and I put my family in dire straits more than once because I didn't have an income.
No one believed me. Doctors said I was depressed. My mom and husband said that, "that is the way you are, get used to it" and I remember crying and saying, I will not, this is not normal!!
I got my tonsils out because I thought they were always infected and it would make me feel better. I got my tubes tied so I didn't have to take birth control anymore because I thought the hormones were bothering my system. I would love to have another child, but I am so tired that I don't feel like I can take care of my husband and daughter like I should.
I went to the FFC in Atlanta (6 hours away) because all any doctor here could tell me that I had chronic fatigue and fibromyalgia. That was very expensive, and out of pocket. After 6 months, I said, look I can't afford it, you need to try something else because I still feell aweful.
They ran the Lyme WB, plus the full bacterial panel and viral panel. I cried when I found out that I have Lyme and Ehrlichia, simply because I felt vindicated. I am actually glad I have Lyme and have something to fight!!! I also have high titers of Cyclomeglovirus and HHV-6.
In November, I started Doxy and Amoxy. It made me so sick. I now have a LLMD appointment in March. I am so excited to go. Do you know if I get 70% better, I think I could walk on the moon?!!!
My biggest problem - Fatigue. Next, joint pain, headaches, and muscle spasms. I think my thyroid and adrenals are fuctioning at very low levels as well, but my blood work doesn't show anything is wrong! Imagine that!!
But, I am learning as much as I can. If anyone can beat this, it will be me!!
Have a great day, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
wow im so sorry u had to go through all of that...i am praying for u to get better ..u went through so much.
When i was 20 i came down with a very high temp that docs couldnt figure out what i had. i had to be hospitalized and they dint know.
I can remember that when i was young i had a great child hood. Then when i was 11 i was rx with ulcerative colitis.
i was hosp many times for it and had to miss school etc.
Before i was married , i thim when i was 23 or 24 ,i dint feel right. I was always tired but i attibuted that to the colotis doc gave me 10mg librium 3x a day to calm me down so i wouldnt get stressed and bleed!
anyway after my son was born in 83 i was never the same. cf all the time etc. then i would have bouts of insomnia etc. and i was always derpessed and tired.
WEll wheu live with it for so long u tend to think that is the normal way to be.
When i met my sons best friends mom..when he was like 3 or 4 she was always in the gym , or working out and running and i remember i used to do that too but i couldnt n e more.
And she was always hapy etc. So to combat the depression i started working out...alot.and even became a personal trainer.
but it was always a struggle to get to the gym but oncei did i felt better.i cant write n e more too much pain got to take break ttul
Posts: 92 | From bethel, ny | Registered: Jan 2009
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posted
wanted to say real quick.i honestly do not know how much mroe time i have on this planet .thats how sick i am.
my son is now 25 and he is waking up with bad headaces. before i um go..i need to know he will be ok..im urging him to get ttested but he hates to go to docs.i dont want him to end up like me. Posts: 92 | From bethel, ny | Registered: Jan 2009
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posted
i think we better go to private messages coz this is supposed to be activism..oy guvalt!!!
Posts: 92 | From bethel, ny | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
There is a bill in congress (D.C.) now - it's been waiting on someone's desk for a long time.
posted
I believe the insuranse also don't want to treat lymes long term because eventually the government will have to pick up the tab for all the chronic, improperly diagnosed condtions. I'm new to this-the whole situation is crazy. I'd like to put all these people that don't believe chronic lyme exist in a room with infected ticks and not let them have treatment for a long time. This might change their minds. This sounds really mean, but i don't think they will understand until they or a family member gets really sick with it.
Posts: 30 | From pennsylvania | Registered: Jan 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi TazG,
In all the seriousness of our situations, I had to laugh, picturing in my mind, a whole bunch of IDSA Docs and insurance co. executives in a room filled with millions of infected ticks!
You are right though, if alot of those people or a close family member suddenly had chronic lyme, some things might start to change.
I guess that raises a question in my mind...
Does anyone know of any insurance co. executives who have family members with lyme?
I am guessing that Dr's who may have encountered the need for proper lyme treatment for themselves or family members are now on the side of the ILADS.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
well back to activism.please lets all get involved somehow!! new year!!
new prez!! maybe we will get somewhere now with the big O..u never no...please go to general suppost and go to lyme vs working a job...
somehow the conversation got into activism over there...maybe its my add!! from lyme...
ok im just at a loss coz i do not know waht to do when ducks say im neg and i cant even move!!!
Posts: 92 | From bethel, ny | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Nomolyme -
Have you contacted the LDA's activism people to lend your hand?
They would know what has happened to the bill before Congress and when the next scheduled meeting may be.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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