Simply Venting

Here you can socialize and have fun with other board members, and talk about all sorts of topics that are not related to Lyme disease.
Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Simply Venting

Post by Cobwebby » Thu 21 Mar 2013 17:52

Simply venting so I just don't start screaming and tearing my hair out.
In September a co worker stated that she had been diagnosed with Lyme Disease by her primary care doctor. She was given a typical dose of doxy (not the high dose often prescribed by Lyme Doctors in the know) for two weeks with another week added at her request.

We don't work in the same building so I do not see her on a regular basis. A month ago I saw her and asked how she was doing. She answered that she was doing poorly, fatigued , with swollen , aching joints and she was going to go to a lyme disease specialist. I should have inquired further, but simply answered "oh good".

Yesterday when we saw each other she said "Guess What! I didn't have lyme disease after all." "What do you mean?" I asked." I went to an ID doctor. He looked at my test results and said it was a false positive." MY brain started misfiring with all sorts of frustration. I really did want to start screaming.

I have to turn it over. She's suffering classic on-going lyme disease symptoms, supported by a positive test,and yet, yet, she is now in the hands of an ID doctor that's saying no-it can't be lyme disease.

And I was so happy and relieved for her in the beginning knowing she had a positive test. :(
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

TicksSuck
Posts: 100
Joined: Thu 31 May 2012 20:25

Re: Simply Venting

Post by TicksSuck » Thu 21 Mar 2013 19:04

Hi Cobwebby,

I think that in your story, the ID doc simply used this "false-positive" argument to get rid of the patient knowing full well that the test was most-probably a true positive. He has read from numerous publications that even though a complete cure is achieved with a short course of doxycycline, symptoms will linger on for a while before disappearing on their own. So, to simplify the explanations to the patient and to avoid the risks of dealing with a chronic Lyme wannabe, he simply lied.

I had a similar experience. In my case, I was diagnosed with vitamin-D deficiency.

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Simply Venting

Post by RitaA » Thu 21 Mar 2013 20:53

Cobwebby,

This is the right place for you to vent. It's especially frustrating when it happens to a loved one, but even seeing a perfect stranger suffer needlessly can be difficult.

Soon after my diagnosis and learning a bit more about the controversy surrounding Lyme disease and (especially the testing), my husband very innocently asked: "So what you're telling me is that when a person tests negative, it's considered a reliable test, but even when a person tests positive, most doctors will say it's a false positive?" That seemed like a pretty good summary -- and especially after I heard numerous firsthand nightmare stories from fellow Canadians.

I hope you're doing okay.

Rita A

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: Simply Venting

Post by Lorima » Sat 23 Mar 2013 2:44

Cobwebby,

I don't think of this as just venting. The stories are important - in fact, I regard them as primary data.

Thanks for writing.
"I have to understand the world, you see."
Richard Feynman

migs
Posts: 89
Joined: Mon 28 Sep 2009 23:00

Re: Simply Venting

Post by migs » Sat 23 Mar 2013 4:29

Unfortunate...more unfortunate is that it's not a rare slip through the cracks or just a bad ID doc.

:bonk:

Camp Other
Posts: 996
Joined: Wed 2 Mar 2011 4:32
Contact:

Re: Simply Venting

Post by Camp Other » Sat 23 Mar 2013 6:14

migs wrote:Unfortunate...more unfortunate is that it's not a rare slip through the cracks or just a bad ID doc.

:bonk:
Why do you say that? What do you think happened in this situation?

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: Simply Venting

Post by Cobwebby » Sun 24 Mar 2013 4:48

Camp Other wrote:
migs wrote:Unfortunate...more unfortunate is that it's not a rare slip through the cracks or just a bad ID doc.

:bonk:
Why do you say that? What do you think happened in this situation?
I can't really speak for migs, but I know my reaction was that her experience is still too common. I thought some progress had been made-I didn't realize ID docs were still quick to deny positive tests .
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: Simply Venting

Post by Lorima » Sun 24 Mar 2013 16:28

Cobwebby,

Yes, I also think this is common, certainly around Boston where I live. It's the "anything-but-Lyme" syndrome, writ especially large here because Steere is at MGH (satirically called MBH, Man's Best Hospital, in the hilarious novel House of God. I know from personal experience that if anyone near Boston thinks they have Lyme, and persists in questioning it after their doctor says they don't, they are automatically referred to Steere. I found this out by calling a bunch of doctors, and asking patients, who they were sent to, by the likes of the ALDF, in the first few days after I caught on that there is a political problem with LD diagnosis and treatment. All roads led to Steere, the world expert, and our local LD "guru", as my husband's (ex-)PCP actually said.

I presume the "false positive" diagnosis from the ID doc came about, for one of two reasons: either because the patient in some way didn't match the distorted mainstream portrait of the disease - doctors really aren't supposed to test unless there is a "pretest probability" of over 0.2, and if their symptoms don't match the IDSA's picture, that probability is thought to be less that 0.2, and hence testing is likely to yield "false positives". Or, as TicksSuck suggested, as a kind of short-hand to communicate to the patient that she should forget about Lyme, since she has been treated and therefore is guaranteed to now be Bb-free.
"I have to understand the world, you see."
Richard Feynman

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: Simply Venting

Post by Martian » Sun 24 Mar 2013 17:29

Cobwebby wrote:Yesterday when we saw each other she said "Guess What! I didn't have lyme disease after all." "What do you mean?" I asked." I went to an ID doctor. He looked at my test results and said it was a false positive."
Do you know what kind of tests were performed and do you know details of the test results?

Without knowing what tests were performed and knowing details of the test results, and without knowing about any other reasons for the MD to come to that conclusion, it is not possible to make a proper judgement on this.

For example if an ELISA was positive, but a blot-test didn't have any positive significant bands, I can understand that an MD would consider that a false positive, which it would indeed be indicating.

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: Simply Venting

Post by Cobwebby » Sun 24 Mar 2013 20:17

Martian wrote:
Cobwebby wrote:Yesterday when we saw each other she said "Guess What! I didn't have lyme disease after all." "What do you mean?" I asked." I went to an ID doctor. He looked at my test results and said it was a false positive."
Do you know what kind of tests were performed and do you know details of the test results?

Without knowing what tests were performed and knowing details of the test results, and without knowing about any other reasons for the MD to come to that conclusion, it is not possible to make a proper judgement on this.

For example if an ELISA was positive, but a blot-test didn't have any positive significant bands, I can understand that an MD would consider that a false positive, which it would indeed be indicating.
I did not ask for the specifics of her bloodwork testing. I do know at least one doctor-her first primary, told her she was positive for lyme disease. I do not know what the numbers were for ID to come to the conclusion it was false.

However, with the patient showing continued clinical symptoms of lyme disease, for an ID to proclaim she never had lyme in the first place is a bit hasty.

Next time I see her I will take more time to learn particulars-when I can handle the frustration.

Are there experiences posted anywhere when patients were false positive , and eventually found out what the correct diagnosis was?

I mean should I be sad or glad for co-worker?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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