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» LymeNet Flash » Questions and Discussion » Medical Questions » after watching under your skin

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Author Topic: after watching under your skin
Cadames62008
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So yesterday I went to the viewing of under your skin. It totally touched me. Im new to lyme mself dx in july, after being sick for 2 years.

it was so informative to me and made the understand why I'm seeing a llmd and not infectious disease. And totally angered me about the panelists who write the ilas (sp) guidines.

I mean seriously how do they get away with it and have for years and years. It doesnt make sense to me. How we as Americans have to go through this.

I didnt understand but now i do understand the contraversy to lyme. I understand but it makes no sense to me. I feel those panelists who are trying to kill us slowly should be sued by us lol yeah right.

idk had to share my feeling about the viewing, and the anger i felt towards those people and all the people ther have killed and hurt.

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Christina

Posts: 102 | From Lacey Washington | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Dawnee
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So.... what if ALLLLL of us DID file a lawsuit against the IDSA?
Of course... we couldn't WIN or anything, but it would bring major publicity for those who know nothing of our plight.

Can a suit not be brought against them???

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Cadames62008
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Thats how i feel....i don't wanna win anything other than not having to hide to get heathcare...and get treated and stop how we are treated and get the guidlines changed...


so what if we all did i mean can we file a class action lawsuit against those panelists that write the guidlines...

in my anger i said it cause it seems they should pay but I totally woul love to see if we can really....and it would totally bring the needed attention

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Christina

Posts: 102 | From Lacey Washington | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
jmoosie
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I'm not a contentious person - I'd normally never think of suing someone. But this interests me because of something that happened in my early treatment.

I was dx 8/07 - had a bulls eye, probably bit 7/4/07 camping in Kent, CT (tick heaven). I started having neuro problems almost immediately, along with all the physical. My LLMD thinks I've actually had lyme for a few years (had lots of exposure, and some 3 wk courses of doxy that made me feel better over the years), and that this tick bite just put it over the top.

But I didn't know to see a LLMD in Aug 07. I started with my GP, another GP, spinal tap, and then ID doctor. This smug son-of-a-b told me I could have 3 weeks of IV rocephin, and I'd be all better. When I was still not improved, he adamantly refused to believe that the lyme was still active, and refused to provide more treatment. When I said I'd like to see someone else who might give me some more abx, he got angry, and said I did so at extreme peril, risking my life! He went on, very smug, very confident, to say that I would read a lot of lies out there, and the supposed "lyme literate" doctors were a bunch of quacks, and to not waste my money or endanger my health.

Keep in mind, at this point my brain was really shot with the lyme, and I wanted to / had to believe in someone. So, I say, why don't I feel better? You have post-lyme syndrome. How do we treat it? We don't. You just go home now, and wait. How long? You'll just have to wait 3 to 18 months (!) to get better, but there's nothing to treat, as it's only your own immune system overreacting.

So, based on this idiot's say-so, I did absolutely nothing (except follow another idiot's path and start looking for other causes, even though I had the bulls eye). All non-LLMD paths lead to a psychiatrist, dontcha know.

So, because of this guy, the chronic lyme had a nice chance to settle in, get nice and comfy in my brain. Because of this guy I had no treatment, so my LTD stopped paying, as I wasn't doing anything.

I never felt so wonderful as when I started back on abx with my LLMD, and had the most gawd-awful herxes. So vindicating! I knew it wasn't all in my head! I knew that lyme had to still be alive!

I suspect if that ID doc hadn't been so slanderous of the LLMDs, I would have gone to one much, much sooner, and I might even be back to work now. As it is, I've been out of work for over a year now.

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http://lymechronicles.blogspot.com

Posts: 21 | From CT | Registered: Aug 2008  |  IP: Logged | Report this post to a Moderator
Cadames62008
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exactly i also had the bullseye rash went to the er when I had it...but my gp says i dont have lyme...my ent says i do and cardiologist lol and of course my llmd says i do

but what gets me i had the rash and comtinued to get sicker over a period of 2 years and basially had to do reseach myself and discover what was wrong with me and then fight to get treatment...

and who knows for how long...i was given a shot of steriods who knows what perm damage was done to me...by the steroids and dr's not wanting or willing to see the obvious....

and because there lab says im neg and there elisa which is a "highly sensitive test" lmfao is neg i can't have lyme....

but then why would i have herxs and are startig to get somewhat better.....

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Christina

Posts: 102 | From Lacey Washington | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
lymielauren28
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Sooo...Let's sue! I'm in!

Lauren

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"The only way out is through"

Posts: 1434 | From mississippi | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
merrygirl
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I am in too!

Melissa

Posts: 3905 | From USA | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
luluMN
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Count me in too!
Posts: 232 | From MN | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Angelica
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Cadames my story is so much like yours. I had a bulls eye rash and was given steroids also by my provider at the time Kaiser.

I went to numerous MDs including idiot over paid shrinks and had to diagnose myself after years with help from a friend. She spoke with her LLMD about me and encouraged me to do Igenex testing. My friend and I had very different symptoms so it was not an easy puzzle to solve.

It took me years of suffering and receiving bad testing to finally figure out that I was not crazy but my doctors were. If only they had not given me bad testing when I had good insurance. Now I have to pay for almost all my treatment lab and meds out of pocket.

The insurance companies certainly lucked out on the fact I was given poor lyme testing and my MD could not read the borderline tests results of my Elisa nor knew that Lyme disease was a clinical diagnosis. I think it was more then luck.

Thank you IDSA and the CDC for letting me go undiagnosed for years. May you fry in a special hell for crooked politicians.

Maybe it is time for a class action suit. Lets not forget about all the dentists that have filled us with mercury fillings either.

[ 05. October 2008, 05:11 PM: Message edited by: Angelica ]

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tdtid
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Actually I know a few months ago, someone had sent me something regarding a Class Action Law Suit on just this thing.

They were working out the legistics of how to fund it, but I know that there are some out there trying to find a way to do this.

I just haven't heard anything more recent about it, so not sure if they gave up and realized it wasn't going to happen or if it's still being looked at.

In any case, it does seem discouraging that this could even be going on in our country. If I werne't living with it myself personally, I would think it was a made up Science Fiction movie going on or something. [Frown]

Cathy

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"To Dream The Impossible Dream" Man of La Mancha

Posts: 2638 | From New Hampshire | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
tickssuck
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So weird I'm reading this...my dad and I, both with Lyme and co's, were just having this very converation last night...that's just what my 80 year old dad said...can't we band together and sue 'em?


I have never considered a lawsuit in my life....but them putting so many people's lives at risk - it's criminal. TS

Posts: 566 | From West Coast | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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to all,

read on left side, LEGAL RESOURCES; ALL LYME CASES WON!!! ************************************

it's been discussed/cussed in activism a great deal.

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onthemend
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This is my husband's point exactly. It's okay for a physician not to know how to 'cure' a disease or for it to be in the early stages of research. What is NOT okay is for Drs. to adamantly say "It is NOT Lyme and could not be because of your test results" when that is simply not the case.

How much money, time and chances for better health are wasted because we listen when initially told it is NOT LD or related infections.

Just say you don't know, & support the next doctor willing to help the patient find out what's really wrong. Instead of slandering him/her.

I have never thought about a law suit, but I will now. & I will look at the links mentioned above.

otm

Posts: 314 | From east coast | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Read this... and be sure to see the link bettyg gave us:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=020713

Feel free to speak your mind!!!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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