LymeNet Flash: New poll on Change.gov tell Obama about Lyme

This is topic New poll on Change.gov tell Obama about Lyme in forum Activism at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/8/1474

Posted by Ed B (Member # 12111) on :

Hello All,

I watch the political blogs quite a lot. Obama's first open

question closed last week. There is a new area to post ideas

called Citizen'sBriefing Book. It will be open only a few more

days.Here is the link:

http://citizensbriefingbook.change.gov/

Even if you already had a log in you may need a new username.

You can search on a topic like before.

There is only one "Lyme" topic. We really need to load this up.

Let people know to go to this site. It is not as smooth as the last

one, but gets the job done.

Good luck! Thanks.

ED

[ 14. January 2009, 01:27 PM: Message edited by: Ed B ]

Posted by bettyg (Member # 6147) on :

sign in is DOWN right now; i tried!

good find; THANKS ED for keeping on top of this for ALL OF US LYME/CO-INFECTION patients! [group hug]

Posted by bettyg (Member # 6147) on :

ed,

eric has a STICKY POST FEATURED at top of activism now, so just add any NEW THINGS there ok! thanks.

VOTE ON EVERY LYME PROPOSAL; points go up 10 points PER MEMBER; YOU CAN VOTE ONCE ONLY.
***********************************************

Posted by slappy2779 (Member # 12193) on :

I posted a new topic on the site uner "Chronic Lyme Disease Taken Seriously" here's what I wrote, please vote:

I was diagnosed with Lyme Disease 15 years ago in the state of NJ. The doctor who finally diagnosed me said I had it for at least two years. Meaning, I have chronic Lyme.

I've since moved to upstate N.Y. Two years ago, I started to have a serious relapse, I went to Strong Memorial Hospital, where they drew my blood, and gave me some antibiodic pills. A week later, while getting ready to go to work, I fell straight to the ground. My wife took me to the hospital where they lost my previous bloodwork. I told them I had a history of Lyme Disease and felt I was having a relapse.

The doctors ignored me, and redrew my blood for more bloodwork. I explained to them how they'll get a false negative since I've been on antibiodics for a week already. I showed them all the info on the disease, even referred them to a book my aunt wrote on the subject which is held highly by the acedemic community on info for Lyme. They continued to treat me like a hypochondriac, not even bothering to get my medical info from the hospital I was in for a month.

At the time I was in the hospital, if I had gotten the I.V. antibiodics I needed, I would not be confined to a wheelchair as I am now. The C.D.C. guidlines for treating Lyme is based on symptoms and whether or not the patient has had, or was in an area with a known infestation of Lyme. Again, they ignored me.

Even after I finally got a retest of my bloodwork, which showed I had positive anitbodies for Lyme, my doctor just told me it means I built an immunity. Again, ignored me when I explained to him you can't build an immunity to Lyme, hence the reason you can get reinfected, and even if that were true, then I would be a medical miracle whose blood could provide a cure.

I have been fighting to get treated, so I can get better. As it stands now, I am in a wheelchair, my left arm has started to get weak and numb from time to time, joint pain, I am fatigued, experiencing brain fog (which is really hard for me to handle since I am very smart, and used to have a mind like a steel trap, now I have trouble putting sentences together when I speak), , unable to comprehend large blocks of texts , migrains, I have literally been falling asleep at the drop of a hat (more than once almost fell out of my chair while my wife was talking to me), I had to quit school (I was going to school for pastoral ministry, am currently trying to finish up online, but struggling with money to pay for it now, and having trouble comprehending), and been experienceing mood swings.

My life has gone downhill the past three years, and the only thing that is keeping me from getting some semblence back is the proper treatment. I still may never be able to walk again, (the longer I stay this way, the lower my chances get) since I didn't get the treatment I needed when I needed it, but at least I can get my energy and brain function back.

This is all because the medical system is ruled by money and not the patient. There are people suffering worse than me, children, but because insurance companies refuse to acknowldege it doctors don't diagnose it. Those who do get ostrasized, black balled, and persecuted. For nothing more than trying to make peoples health better, and having the courage to stand up and say, "No, I don't care what the bean counters say, this person is sick, and this treatment is making them better."

Some doctors say long term antibiodics can possibly be detrimental to your health, yet we treat cancer with chemo, which is basically a poison. Why? Because the benefits outweigh the cost. Same thing with lyme. So what I'm asking is for the government to basically step in and fix this problem before it gets worse, and God forbid someone, or some child, dies and it gets out how it could have been prevented.

Posted by eric555 (Member # 18343) on :

Hi Ed and Betty and Everyone Else,

Ok, cool...

I voted on All Lyme related topics and made some comments as well,

and ofcourse added some of my own New Topics there for...

Spinal Injuries of the Spine

and

Free Equal Health Care For All

Please Vote on these too...

Thank you.

Best regards,
Eric

[Smile]

Posted by liesandmorelies (Member # 15323) on :

Just went there and started voting. I will go back and ad comments too.

This is good. But, we gotta get everyone over there. This is a great oppurtunity.

Thanks,
Elizabeth