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Veteran Member

Date Joined Apr 2009
Total Posts : 1013
   Posted 5/16/2009 11:00 PM (GMT -7)   
Call me crazy its ok..lol but  the more I sit contemplating as to what to do, I have come up with a decision and a plan. I think its a good idea that we band together in a protest in front  of the White House. make them understand  who we are and the invisable feeling we have  from the medical field.( stand out there with our t-shirts, sings, and for those with IVs polls in hand ).
Lymes Disease needs to put in the governments face and put along with a face. The condition and its affects must be addressed and a resolution to relieve these symptoms in the people they affect.
1 of my thoughts is I can go the the local stores in my arera and see if they would be willing to sponsor me for this adventured, as I havent been able to work in 3 yrs. ( who knows  it could be worth a try).
LymeUnknown you stated (Before I got ill, I was a breed specific legislation fighter (dogs). Did a lot of research. Lead 3 protest marches, spoke before hearings, and wrote about a thousand letters. I speak it wherever whenever I can. If those who are fighting can keep up w/ the fear mongers and bigots, one day we will catch up because our mouths are so big and because we are right. ) maybe you if willing can help put this into action. I would be willing to give all my engery to this cause.
All I am asking for is that everyone is allowed treat by Dr's for this disease.and not only treatment but compassion.

still looking for answers

Post Edited (RottenDog) : 5/17/2009 12:18:42 AM (GMT-6)

Veteran Member

Date Joined Sep 2007
Total Posts : 2017
   Posted 5/17/2009 5:49 AM (GMT -7)   
Most of us are too sick to travel... too tired to write letters.... hooked up to IV's and have to go to a clinic everyday for a dose of rocephin, or completely out of $ and can't do anything "extra". And, a lot of us have already traveled, written letters, protested, etc.

It's hard to band together as one and show a sign of community, determination, and force to have guidelines by the IDSA and CDC rewritten. But I applaud your willingness to post.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 5/17/2009 11:45 AM (GMT -7)   
RD, I am certainly willing to fight, but I don't have anything to fight just yet. I have not yet been turned down or away. I am willing to fight for others, but I need to learn a lot more. The key in my fights for dogs is having enough knowledge to intelligently rebut lies and propaganda.

Plus, I have no funds. None. Just my BCBS and a pile of debt. So I'm not really free to travel, esp having 2 dogs who have no one but me.

My PCP, who has not really been of much help to me, DID acknowledge the possibility of chronic lyme -- he just doesn't want to or know how to treat it. And he's not able to diagnose it beyond the Quest test. (at least he ordered the right one!) And he did give me a formal referral to a LLMD.

What remains to be seen is if this LLMD is capable of a diagnosis and if my insurance will reimburse me for the visit. If I am lucky enough to get a diagnosis, but my ins won't pay -- well, therin begins my fight. I am a municipal court clerk, so I'm sure I could get a little free advice to start with.

RD, if it comes to it, I would do my best to join a national type protest and fight, but I do not have the means to organize it. I don't know everyone else's status, but I've seen enough on here to believe there's a lot of folks who should be consulting attorneys. I believe this fight should start against insurance cos and Drs who ignore test results. I believe that there is AMPLE information out there to substantiate negligence and a fight against them. That is my opinion and I acknowledge that I am very new to this.

Veteran Member

Date Joined Apr 2009
Total Posts : 1013
   Posted 5/17/2009 8:40 PM (GMT -7)   
yes i unserdtand, i to do not have money nor means but i am also willing to put this in the faces of whoever to get it changed. i have a posiyive lymes test, its not worth the papper is printed on. even the health dept here didnt understand why the ID, didnt treat me why waiting on the MS test, 1 wouldnt hamper the other. as for my PCP who first tested me, he said i have lymes but he knows nothing about it, and sent my to the ID.witch a lota of good thats done me.. my point i'm trying to make is, if this was another disease we could get treatment, well lymes is a disease and we need to be able to have treatment without being made to fill infirer.

so if this means i have to knok on doors then so be it. as of right now i am still able to make calls talk and drive, i just cant walk to much. but my mind is still clear for now. and i hope i can get treated b4 i lose that, its about all i have left. as for the money no i dont have that either. likei said b4 i havent worked in almost 3 yrs now. i am on a county program for ins, i have to do to who they say go to, well just my luck there isnt a LLMD in this part of Tx. and closes 1 is over 100 miles away and not in my program list. so i guess this means i'm out in the cold.. well thats not good enough for me. everyone no matter who should be allowed treatment by someone who knows what there doing. in my book that means all Dr. should go back to school. if they dont know what lymes is then they need to learn. even if its the simple guidlines.i do not fill thats asking to much. couse my life weighs in the blance here as i am sure is happen to many others. i know i am not alone here.

sorry if i keep going on about this but i am scared if i dont do anything then i will subcome to this disease and not have a fighting chane to beat it. i just want my chane to win. and the prize is my life as i chose to live it.

wishing everyone well soon
still looking for answers

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