Perhaps this should go in the support area and many of you seasoned Lymies probably already know this:
Get a copy of the results of all tests ordered on you AND get a copy of the original lab req the doctor fills out.
My sx started in 2005. I first thought Lyme, but also asked my ID on my first visit to test me for Toxoplasmosis. It's a differential dx and I had all the sx. When they called me they said all tests were negative. so I thought O.k, and didnt ask about each one individually. time went on and I was dx with various other things over the months. went to see ID again in 2006 said I know its something infectious I am still sick...they repeated all the tests again and I though Oh great everything is going to be negative again. But I got a call a week later "no wonder you have been sick all year...come in right away you have toxo" I did and the ID sat and began writing scripts. I said, " but it was negative last year"...and they didnt repsond...I was reflecting I guess but happy I had found the culprit. took the meds for 2 weeks, thought I was going to die, my sister had to drive me into the next appt. this time I pointedly asked ID specifically, "What was the result of my test when I asked you to draw it last year" After much paper shuffling and eyes in chart they said, " well I ordered it but the lab forgot to draw it. I was in shock, my sister said, " you mean to tell me that she has been this ill for a year because the lab forgot to draw it". I let it drop...that was in Aug. fast forward to today: so I am still trying to follow up on this toxo since 3 of my toxo IGG/IGM have been positive for the last 5 months...I called the lab directly and asked to see if it was drawn in 2005. Due to Hippa they didn't want to release any info to me and said to go back to my ID...which I explained said lab didnt draw it so couldn't. Well after 20 minutes of heated discussion with a sr level employee I found out THE DOCTOR NEVER ORDERD IT!!! The lab personel said she had a copy of the req in her hand from doc and never ordered. I can't beleive the blatant lie...I can understand mistakes...but this, NEVER. FUMING
Posted by HEATHERKISS (Member # 6789) on :
That sucks! I'm so sorry. Unbeleivable! Stupid Duck. ****ty lab.
I'll bet they both are lieing!
Posted by cantgiveupyet (Member # 8165) on :
something similar happend to me, but it was for food allergy testing. I was told sure we can check that, then it wasnt ordered at all :-(
The dr i go to now dont draw blood in office, so i always make a copy of the req and get copy of results to make sure that everything was ran.
Im so ,so sorry that you had to go thru all of this and be sick for a year. Im just glad that you had it run again and found out this time around
Posted by lymedad (Member # 8074) on :
I got a better one for you.
My daughter's "Infectious Disease Specialist" drew blood, sent it to our local lab, the test came back positive for Lyme (Western Blot).
He saw the results, made the comment that it has to be a false positive because Lyme is not endemic in this part of the country, further stated that the local lab wasn't very good at this type of testing.
He made no further effort to test her for Lyme.
Sent her to his buddy, the Rheumatologist, where they both agreed it had to be Fibromyalgia.
That was in July of 2002. Fast forward to October 2005, as a last ditch effort we took her to a bonafide LLMD, he drew blood had it tested at IGenex.
The results were the same, positive for Lyme, Bartonella, Babesia. You want to talk about fuming !!! I'm past fuming, I've gone all the way to pi**ed off. (Oh come on, at least let me use the word pi**ed off).
I've decided if I ever see the so-called infectious disease quack on the sidewalks of Ventura California, I'll probably run over him.
It won't make my daughter well, but I'll sure feel better.
Okay, I'm done now.
Posted by Tincup (Member # 5829) on :
The crimes of Lyme.
I am so sorry this happened.
And you too dad. It is horrific.
PS I'll pay for the gas.
Posted by Michelle M (Member # 7200) on :
So sorry, Kumba.
I hope you've had the cathartic experience of throwing him in the alligator pit/duck pond.
I authored a coupla smoking hot letters to my misdiagnosing, arrogant neurologist. Then I filed them instead. My LLMD is 75 miles away. I thought, "One day I might need something from this idjit." Instead, I subtly mocked him by sending him all my positive lyme and babesia tests and cancelling my "MS" follow ups.
Later in fact I DID need him, when I ran out of my monthly allotment of Relpax (his office was very cool about giving out tons of samples).
Get copies of all tests.
Even if he HAD tested and treated you a year ago, he would have stopped, and you would have still been sick from lyme. It's just a shame he couldn't tell the truth.
I'll be glad when you have a good doctor!
Michelle
Posted by Cheryll (Member # 10063) on :
The docs can be so deceptive. I read recently where a lymie was told sh/he was negative, when sh/he asked to see the results, they had blacked out the bands that were positive. It didn't work... you could still see the lab results.
I have also heard of people being told they were negative and when they firmly requested the papers, there were significant positive bands.
I think they do that because of the hassles they get... not being reimbursed, pressure from us poor suffering lyme victims, etc. All because of the dratted guidelines set up by the IDSA.
Glad they are being investigated.... hope they get hung by the ba**s. My greatest fear is that they will get a slap on the wrist and continue on as usual. Our best hope is the Ct AG knows someone who has or had lyme, so he feels he has to do something and is personally invested.
Posted by kumba (Member # 7733) on :
Thanks all, Lymedad, I was wondering what happened but didnt want to ask. That is egregious. I would defineitly be looking into a malpractice suit.
You might be right Michelle. I don't know if I definetly have lyme yet...as the sx of Toxo and lyme are very similar...could be a coinfection. but immunocompetent people can also get very sick form toxo long term, althuogh rarer, and I certainly didnt get adequate treatment. But to cover all bases I did send serum to Igenex for western blot, do have an appt with LLMD in Jan, started amoxy and probenicid just in case it is Lyme. Not doing anything for the toxo though...held off on the ART as advised form people here until under care of a LLMD.
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