Long long story, but what it boils down to is I got bit in November 2011. The tick was positive. I started my research into this world of lyme.
My daughters (2) have always complained of headaches and joint aches, sore throats and sometimes my sons (2) complained as well. This has been going on since we moved here in 2003. I brought them to their pediatrician numerous times.
As I write this I say if I only knew.....
We were sent to cardiologists, rheumatologists, MRIs, cat scans, orthopedists, etc. The doctor even tested for lyme.
I come from NYC and knew nothing of this thing called lyme.
Anyway, I finally realized that I needed to get my kids tested and they are all positive (except 1 who is in college but will be tested next week). My husband and I have it too.
OK, so here's the question. I requested a copy of my daughter's file and she tested positive in 2006!!!
It was positive on 2 tests, one test was just band 41 and I know they don't have to tell you, IDSA guidelines and all. But there's another test that clearly states that she was positive for lyme.
Nobody told me. And back then I was dumb enough to trust the doctor and didn't even ask for a copy of blood tests.
Who knew?
If I found out in 2006, I could have possibly prevented the rest of my family from getting infected and gotten my daughter help years sooner.
We are so blessed that it hasn't attacked her organs or nervous system yet. We are also blessed that we are seeing one of the best doctors in NY.
I'm not one to sue anyone, I never have although I had plenty of potential cases. I was battling breast cancer in 2006 too and I think I met every incompetent doctor in the state of NY during that journey.
I want to know if I have any legal ramifications against this doctor. My doctor bills are piling up rapidly and maybe, just maybe this will teach one ignorant doctor that lyme is real.
Any thoughts?
Thank you for reading this and for any advice you can provide.
Posts: 47 | From usa | Registered: Nov 2011
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posted
That's pretty "damning" evidence! Why not call a lawyer to see?
In many cases it is hard to sue because of the IDSA guidelines. They could say well, any round of antibiotics she had after her positive test would have cured her. (wrong!)
You would also have to have a doctor willing to testify to the fact that Lyme is not easily cured IF she did indeed receive abx at some point soon after. BUT... this seems to be medical negligence if nothing else!!
posted
Thanks Lymetutu, I think I will. I work for a ton of them but malpractice isn't their specialty. I'm sure they could direct me where to go. I can't wait for the morning....
I only found this out on Friday night when I sat down to read the records. I'm still shaking.
Posts: 47 | From usa | Registered: Nov 2011
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Ever sue someone for a difference of 'opinion'? Wont turn out well Cause everyone has one.
you will hear"Its a false positive"
"It wasnt positive on five bands that IDSA claims necessary,,,so does CDC.
"no treatment necessary,it will resolve on its own"
"that one abx you took 5 years ago for hangnail cured it all!"
or a thousand other excuses similiar in tone and content,,,as screwy as we all know they are they have too much on their side.
It will be easier to roll thousand pound rocks up mountains than get to first base with any suit.
The costs will FAR exceed the results, channel your money and energy to get everyone well, thats what counts.
We ALL knew too little TOO LATE!!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
You said it (clearly states that she was positive for Lyme on another test) - what bands showed up? You only stated one test (band 41).
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Unless you have the constellations all aligned as below, you likely don't stand a chance with the legal system. Even then, the CDC, NIH, IDSA are all stacked against the patient.
[IDSA is explained in the "Diagnosis" thread below.]
The thing about a CDC diagnosis, it's not based on just a test. It's a multi-tiered absurdity.
IDSA doctors tend to require all the things below to line up at the same time - and after a RECENT tick bite. They discount delayed symptoms.
It's nearly impossible for all this to happen: ----------------
1. RECENT BITE, with tick having been attached more than 48 hours. (This criteria is so lacking. Lyme can be transmitted in minutes if tick is infected).
with RECENT RASH that would have to be a perfect Bulls Eye, seen by the doctor (most people never get the rash)
2. ELISA test, must be positive (but rarely is as it's a very inferior test).
Only if positive, then move on to:
3. Western Blot must be positive IgG (when an IgM is also indicative but they ignore that. They will also claim positives are "false")
4. Lumbar Puncture may be required to find lyme in CSP, cerebral spinal fluid (which is not a good test at all. Very unreliable. Worst chance at finding lyme if present than even the Elisa.)
5. Swollen Joints. (They also like to see swollen joints but lyme does not always create swollen joints, even when in intense pain.
Neurological symptoms are rarely considered, nor are those attaching other body systems.)
Diagnosing Lyme Disease (and/or whatever else it might be) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Even with all that, the offical IDSA stance is that low dose of
one to nine days (maybe up to 2 weeks or a month at the very most) of
just a single antibiotic will cure.
For anyone who has trouble beyond that, they famously state
"attributed to the aches and pains of normal daily living." (paraphrased as closely as I can recall).
Even if you "win" - the treatment that works is not being used by IDSA doctors.
They will drag you through the mud and much worse.
If you do still consider this, be sure to watch the documentary "Under Our Skin" and see how the IDSA has treated various LLMDs who have been taken to court for no reason at all.
The IDSA ruins lives in many ways. It's not right but right now the focus has to be on getting the right treatment, creating a healing environment, etc.
For anyone with all the resources to do that - and to afford to just turn this over to an ILADS-educated LL attorney who is brilliant & wise -
- who will do all the work and worry for you, for years -
- well, then I wish you all the best of luck and give my utmost admiration.
A few years ago (or maybe even ten years?), somewhere in New England, (I think, but perhaps a little south of there), someone DID win against an IDSA doctor who did not do right by them with what should have been a clear diagnosis and they went on to get much worse.
posted
I would give 'em "heck" for not telling you about a positive test!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Whatever you decide to do, very quietly, arrange with the "records staff" office person to send you copies of all tests, etc. Just for your personal file.
If you feel you have to explain, you might just say something like there may be some insurance changes and you just need records. Try not to raise any flags so that you can get all the records.
You'll have to sign a form and return it to them.
That's important to compile regardless. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow, thanks everyone for your thoughts. I have watched UOS a few times. Well I don't think the constellations are all aligned. In fact after reading all of this I wonder how those people sleep at night.
I'm sure someone who is somewhat close to one of those goons has gotten lyme. I wonder how they get treated. They treat us like criminals for getting bit by a stupid tick.
I feel like I'm in a nightmare and I can't wake up. Every day there's something new. I'm petrified.
Thank you all for your thoughts and for taking the time to answer my question.
Posts: 47 | From usa | Registered: Nov 2011
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posted
Oh Keebler, I did request a copy of the records for all 4 of my kids. They asked why and I said because I was moving. They charged me $80 and gave me a 2 page report for each kid - it was their immunization chart.
What mother doesn't have that? So I put a stop on the check and told them I wanted the whole charts. They were very rude and charged me $100.
I know I didn't get the whole chart as blood tests are missing for my boys and I just know there's lots missing.
If the doctor was in when I went there I would've given her a piece of my mind. Instead, I gave it to her snotty assistants. I was proud of myself because I'm not usually like that.
There was a message on my voicemail from the doctor when I got home. She wanted to see how everyone was doing.
I didn't return her call.
This is insane.
Posts: 47 | From usa | Registered: Nov 2011
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posted
Good for you!! I know they charge for charts, but that is insane about $80 for immunization charts!!!
Did you get copies of the Lyme tests then?? I would make sure you have copies of any tests.
From now on, any time you or members of your family get tests done, you ask for a copy of the test results. Most doctors do NOT have a problem with that.
My LLMD used to mail me the ORIGINAL test results, keeping the COPY for himself.
My current GP gives me copies of anything I want.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by plshelpme: Yes Lymetoo, I have learned to do that. How foolish to actually trust a doctor.
I wish I could have a drink :0)
-
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
What is the statute of limitations situation on this? The legal people will know. These cases are hard to win.
And maybe you can have a doctor you are seeing now, preferably a primary care doc not a lyme doc, request to have your whole file transferred as you are changing doctors. I think there is a request form you would have to sign and your current doc can fax it to the old doc.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I think you also pay less if the records are transferred to another doctor. But you would have to emphasize that you want ALL of the records transferred.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
quote:Originally posted by plshelpme: Yes Lymetoo, I have learned to do that. How foolish to actually trust a doctor.
I wish I could have a drink :0)
SURE drink all the water you want!!!!
or that funny koolaide
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Just don: ALL I drink is water!! I bought one of those Zero Water Pitchers and it comes with a meter to measure, I don't even know what, I think metals. That's another can of worms I don't want to open just yet. I didn't read the booklet.
My tap measures 54 and my refrigerator (icemaker) measures 20+. The pitcher really does measure 0.
Well tomorrow is the big day. My 2 girls and I are off to the doctor.
Lymetoo and Poppy: I sent a release for the pediatrician to send the records to Dr. H and they said sure, we need a credit card # for $100. I can't.
I didn't even inquire at work today, not after reading the word 'equivocal' after the test results and all of your responses.
I'm reading Cure Unknown now. I'm amazed.
Posts: 47 | From usa | Registered: Nov 2011
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