posted
I was (mis)diagnosed with MS a year ago, and spent that year on an MS drug. Before that dx, my dr ran tests to rule out other diseases.
My lyme test showed two positive bands, one IGg and one IGm. They were both the "41". I questioned him and he said "oh, probably just a false positive."
I had myself retested through Igenex, and am CDC positive with three coinfections. Am currently on IV abx.
When I showed my Igenex labs he stammered, hemmed and hawed and just kept repeating "this isn't lyme, this isn't lyme." But he couldn't tell me what would cause the positive results. He just kept saying "your LP was neg for lyme, so this isn't Lyme."
I obviously don't see him anymore, am currently with a LLMD. I am not necessarily interested in money, but am concerned about his arrogance and don't want him to blow anyone else off.
Any thoughts/advice appreciated.
Posts: 374 | From United States | Registered: Nov 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I really don't think you'd get far if you tried...
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
You could try, however, I'm sure you wouldn't win.
If you had S/S for MS, then...well, the doctor can argue that. Plus, you had a neg Lyme Lumbar punc (which we ALL know are inaccurate, but the medical community believes that it is accurate, and your doc can find medical boards backing him up) AND the CDC says test-wise that you aren't positive UNLESS you are both IgM AND IgG Positive on the bands that they say you need to be Positive on.
And Igenex isn't a 'national' lab, meaning they may not accept your test results.
I know how it feels to be misdiagnosed. I was told in 1996 that I had mono. 6 years later, a doc tested me for EBV and I don't have it, he said I never had mono.
It sucks I know, my late teens and entire 20's has been spent with Lyme.
I am planning to write a letter to my doc who told me I had mono (politely) and encourage her to test patients through Igenex. My brother went to this same doc a few months ago when he had MS symptoms. When tests came back neg (Neg Elisa), he was told he had anxiety or depression.
Some things never change.
Anyhow, like I said, you could try and if you have the extra money to spend, then go for it. Many doctors are very arrogant (like Lawyers), it seems to be a pre-requiste to enter law/med school. I know, I'm an RN.
Good luck to you, and keep us posted if you succed. I would just hate for you to get caught up in a losing battle while you are trying to regain your health. Stress is a nasty immune-downer.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Most, if not ALL of us know what it's like to be misdiagnosed many, many, many times before getting correctly diagnosed or figuring out ourselves/or through a friend what is wrong with us, etc.
But like Ocean said, you won't get very far at all.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I don't think a lawsuit would make it very far (as others have said), but you could make a complaint to your state medical board.
It won't make things "right," but maybe it will shake up the arrogant duck when other patients come in with Lyme.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
If you could sue and win, then there would be precedence for a massive class action suit against the whole medical community. Can't see that happening.
Posts: 51 | From Reno, NV | Registered: Dec 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
you might want to be careful of this. my own insurance company sent me a letter saying they were putting me on a high risk group after being diagnosed.
sometimes it's like pandora's box.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
BTW, IGENEX is a Medicare/Medicaid approved lab, that is also certified in those states requiring an additional license. This lab is as legit as ANY OTHER LAB. Tell that to Dr. Arrogant.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
He was following the IDSA guidelines. Unfortunately they are the currently accepted guidelines for lyme disease.
None of us have a leg to stand on as far as the law is concerned when it comes to misdiagnosis if the doctor is following IDSA guidelines no matter how inaccurate they are.
If you have lab tests that show you are postive for co-infections, you could complain that he didn't test for the co-infections. I think there is one co-infection that is mentioned by the IDSA guidelines but I can't remember which one at the moment.
I think it would be helpful to write this doctor a letter once you are improving and explain the controversy and facts regarding lyme.
Ocean wrote: And Igenex isn't a 'national' lab, meaning they may not accept your test results.
Not sure what you mean Ocean. IgeneX is an accredited lab. The CDC accepts their tests for surveillance purposes just like other labs.
Some doctors think that have too many positive test results but the fact is that they test for 2 strains instead of one unlike other labs.
quote:Originally posted by AnnaL: I don't think a lawsuit would make it very far (as others have said), but you could make a complaint to your state medical board.
agreed
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I tried to file a lawsuit against Unum insurance. They have trained professionals working around the clock to fight people like you and I. They sent me threatening letters, including letters I myself had written by e-mail or posted online talking about my illness.
They twisted it and distorted it out of context and said "You may wish to reconsider your decision and we request that your lawyer discontinue contact with our office."
Not only threats, but the support of IDSA guidelines and an array of other things will be obstacles to your recovery and your finances.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You asked: "Can I/should I file law suit for misdiagnosis?"
As others have said, you do not stand a chance.
That said, I did read of one woman who did - and won - somewhere in New England probably over 8 years ago. She may have had a bulls eye rash, though.
(If anyone is familiar with that case, it'd be interesting to find her atty. I wish I had saved that to my file. First, although the IGENEX tests were positive, were they CDC positive ? Did you have a rash (one may be required by CDC)?
Even if so, the IDSA still says lyme is no big deal. You would need an excellent attorney and, even if you win, any award may not cover all the court costs.
Add to that the stress involved and it would like ruin your chance for recovery. We need all the stability we can get and stress is especially hard, considering that the endocrine system is hit hard with lyme.
And - no light matter to consider - even just filing a case - you might NEVER be able to find another doctor again (outside of your LLMD). You file would be marked for life.
None of this is fair but the best thing is to focus on what you can do for your health right now.
----
All that said, I can very much appreciate your having said: "I am not necessarily interested in money, but am concerned about his arrogance and don't want him to blow anyone else off."
If you have the strength and this would not at all take you down . . .
Perhaps, if you go to the local MS support group and share your personal story -it would serve some purpose. That might be stressful . . . and you could have a friend go for you.
If - or when - you show much progress you might have a local reporter do a feature on your journey.
But I'd do this through your local lyme support group to be sure you'd get a reporter who was LL and would keep the scope of the article narrow - to your progress and not open it up to be bombarded by the IDSA as they usually do with any media coverage.
As much as it is socially responsible to warn others, it will have less chance to boomerang if done as much "under the radar" as possible. For now.
If you do share with the MS support groups, or in an article, it's great to have links for key articles and books for their "side-bar" links.
posted
All excellent advice, and alas, what I expected to hear. Yes, my test was CDC positive, but obviously not the first one, just the second one I ran on my own.
Thank you all for the input. Later, I will use my story for good, without creating any health issues for myself. Thanks again.
Posts: 374 | From United States | Registered: Nov 2008
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-------------------- Sassy Posts: 12 | From TX | Registered: Oct 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Dudes!! Don't shoot the messenger! I'm not saying I don't trust Igenex. It's just that they were investigated in NY a few years ago, LOTS of doctors think it is a 'quack lab', ect. If you get a Neurosurgeon in a court room who graduated from Yale, who are they going to believe?
Unfortunately, I think we all know. My insurance didn't pay a dime for Igenex, but it would have for Quest.
They are an 'independent' lab is what I was trying to say. The doctor can't merely make a little X on his/her sheet next to the CBC and E-lytes.
Ya'll understand??? I'm merely parroting what I have read about the Igenex controversy. If you show up with a Quest lab showing one measly band and then a bunch on Igenex and a Neurosurgeon badmouthing Igenex, everything that comes out of your mouth will be an exaggeration according to that judge who probably knows nothing about Lyme.
Believe me, I'm trying to get my brother tested with Igenex and his doctors have never heard of it. It's frustrating to say the least, esp when the dumb Elisa comes up neg.
Anywho, I really need to get my tired butt to bed.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I agree Igenix has a horrible reputation outside this Lyme community. Not trusted a bit. This is NOT my thoughts, just what I hear.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bettyg
Unregistered
posted
quote:Originally posted by METALLlC BLUE:
They sent me threatening letters, including letters I myself had written by e-mail or posted online talking about my illness. ******************************* *******************************
They twisted it and distorted it out of context and said "You may wish to reconsider your decision and we request that your lawyer discontinue contact with our office."
mike brought up an excellent point, everything you say HER or elsewhere online can be found, printed, and USED against you, so be careful what you say or DELETE the ones you should not have mentioned now.
i other valued member of this board is OFF for this reason only on something really dirty they pulled on her and her child who goes to school.
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Thanks again.
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