I am really mad about the lyme movement,that is why i agree with the post that was on here awhile back,,that we should THREATEN,to give blood like aids patients did,NOT give.
I lost 1 friend 3 years ago to lyme disease,and right now a close friend of my daughters who is 15 years old,is in the intensive care unit on a ventilator.I cant stand the site of it much lomger,and you know how hard it is for people in the middle of the United States to get diagnosed,matter of a fact,anywhere.
I am almost sick to my stomach,as there is nothing more i can do for this girl.Citruslyme came to my house,due to her being from Canada,and not haveing insurance,the lyme doctor wouldn't prescribe an IV,becuase just the weekly blood work,and nurse fee's to check it was 400 dollars a week,not counting the medicine itself..
I'm tired of people that cant be helped due to stupid guidlines.But the problem also rests on everyone seems to have to find the one silver bullet.
I was ill for 15 years,i have been on artminisinin,biaxin,french green clay,and macca.I have gotten rid of neuro symptoms that would never go away,and that would make the strongest of men think of doing the suicide thing.
Another friend of mine,his wife works at a personal care home.She told me of a 43 year old lady that was in there for ten years because of lyme disease.I went to see her about 20 times over the summer.They had to re-break her knees as they wouldn't go down,while she was laying on her back.
All these dam doctors know around here is what the CDC says.And that is the IDSA guidlines.When it comes to treating tick borne diseases they are gunshy.
We cant let this keep happening to people.We need more coinfection testing.After all lyme disease is actually,any disease,a tick gets while hitch-hiking on mice,rats,etc.Some of these diseases,are not known to man.S
o i agree with a past post,the name lyme disease needs changed.Tick borne disease,or something of the nature,and different treatment routes be taken.I
feel people need treated for the severe pain that comes with this illness.We need to become closer friends.Talk to one another more often.If you need help ask.There are a bunch of great people here.
I feel the IDSA knows more than what they are telling us and its time they have come clean.Wouldnt it be nice to admit people with tick infections are really ill.So friends ,family,etc,know what it is to have this il;lness.
There 1 month treatment and your better,doesn't look good at all for a person that is very ill.We diserve to be ill,with a disease,that has a name.
There IDSA theory,that people are cured,and need to look at other routes is bullshi&.Many have gone all the other routes before ending up to late at a LLMD's office.
The IDSA needs to go the other routes,and figure out what is wrong with us.How can so many with tick bites,have so much in common.I am getting ready for bed,and as i do every night,
I pray for us lymies,i have been bedfast for 3 years, i have nearly died a few times.Been hospitalized for weeks more than i can count.I pray one day the nightmare will end.I pray for all the ill people in the world.
When you become sick,it makes you realize,how many sick people there are.We are in a war right now,the government could care less if 75 people or so a year die from lyme disease.And the number is probably far higher than that.
The United States,isn't a country anymore,it is a corporation.
We need to do something that will make this government really listen.Not sure if the blood route is the way to go or not,but its the bes thought,and most scary one i've heard of.
It may just work.A friend of mine works in the office of a senator,she has talked to him,about me and lyme.
He knows very little about it.I had her talk to him about the lyme bills.He told her probably nothing will change much in your friends lifetime.
How can a someone who knows nothing about lyme disease make such a quote?And how can someone know so little about lyme if there talking about bills at senate hearings,etc.Sorry about this being so long but,something needs to be done.
posted
Hi -- A lot of people share your frustration and have been working on this for a long time, and will continue to do so.
Along with the efforts we all join in through various calls here for activism, I encourage you to do what you can, as well, like make phone calls, write, whatever you're able to do. I am constantly posting and handing out info I have typed up so that people can go online and study website info.
Can you edit your post so it reads a couple lines at a time, with a space break in between? This is for the people here who have trouble reading. Thx.
Posts: 13117 | From San Francisco | Registered: May 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I'd like to be able to read your post 8man, but no way can I read that big block of text!
Sorry.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, many of us have become desparately ill due to tick borne diseases, and share your anger and indignation.
The medical care system in the united states is broken, yet as the wealthiest nation in the world, we could afford to pay for everyone's treatment and do more TBD research if there was a political will for it.
So I agree with Robin, and urge you and all of us to do what we can -- write letters, make phone calls, if possible.
Because we are going to have to help ourselves. It seems that people who have been untouched by TBD are so often unaware and ignorant of how devastating it can be.
Yes, I think the possibility of lyme transmission through the blood supply is a huge story that should get more attention.
Posts: 2557 | From home | Registered: Aug 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I understand and empathize with the frustration,futility,pain and suffering of all lyme patients and families.
Threatening to sabbotage the blood supply is NOT a good idea...
We have'nt reached that stage yet...
How about a community getting together some churches and companies and makeing a patch Adams Kinda free lymie clinic....
I'm looking into it down here in safety harbor and already have ONE llmd(trainee) who said he would donate some hours...
NOW all I need is the rest!
In the meantime...SPRINGTIME ON THE WHITEHOUSE STEPS WOULD BE NICE>>>>>
zman Let's put it this way....I'm gonna be there in JUNE....how bout youse!??
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I understand and empathize with the frustration,futility,pain and suffering of all lyme patients and families.
Threatening to sabbotage the blood supply is NOT a good idea...
We have'nt reached that stage yet...
How about a community getting together some churches and companies and makeing a patch Adams Kinda free lymie clinic....
I'm looking into it down here in safety harbor and already have ONE llmd(trainee) who said he would donate some hours...
NOW all I need is the rest!
In the meantime...SPRINGTIME ON THE WHITEHOUSE STEPS WOULD BE NICE>>>>>
zman Let's put it this way....I'm gonna be there in JUNE....how bout youse!??
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks very much for breaking up your post, 8man - much appreciated.
And what you said is right, of course - dead right, unfortunately.
It is shameless the way we are all being manipulated in this country. I just hope we wake up in time to do something about it.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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