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» LymeNet Flash » Questions and Discussion » Medical Questions » Obtained old test records/past doctors. Tested for Lyme 2000 / + NEVER TOLD!!

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Author Topic: Obtained old test records/past doctors. Tested for Lyme 2000 / + NEVER TOLD!!
DebAz
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I am a bit upset.. I decided to get records and test records from some past doctors since I became ill. I had some but wanted to review all and I asked for records from an old Pain doctor of mine whom I did not like much..

But. when I reviewed the record she had me tested for EBV and LYME and Both were POSITIVE

I knew I had EBV before seeing her as positive a few times as that was the first thing my Primary found when I go so ill.

But this doctor NEVER told me about the LYME testing showing up as IGM Positive. IT is just a LABCORP test but it says and recommends further testing and.... well..

I think that was a big mistake on her part and I could have gotten treatment back 8 years ago???

That could have made a bit difference?? Don't you think??


Anyway.. This lady brings up some bad feelings and now this??

Yikes

DO you guys think she should have followed up or at least reported this to me? And because she was just a pain doc I did not even know she was running those tests or I would have asked??

The tests she ran were just normal stuff or pain med levels and such..

Anyway

THANKS for listening..

Deb

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david1097
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Hard to say, everyone says the test are not very good and should not be used to rule in or out lyme. They could argue that you did not have the other symptoms of lyme so it was ruled out.

If you have proven lyme now (cdc positive two tier) then you might want to consider a malpractice suit based on the obvioulsy missed diagnosis. If there is any room for uncertainty in the current diagnosis then I would tread carefully as your case will be put under a microscope if legal action is started.

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Keebler
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Your doctor may have consulted the CDC and, even with positive labs, the CDC has additional burdens to a positive dx.

I do think you need someone to determine what happened. It still comes down to most doctors thinking this is no big deal, sadly.

I'd ask your local support group if they know of an attorney whom you could consult - not that it would go anywhere for the CDC and IDSA still say lyme is no big deal - but I'd like to see you get an advocate and legal guidance.

I'd love to be able to sit down with legal counsel and ask the doctor "why?" - I'd really want to know "why?" you were just being dropped.

Best case scenario is that the doctor may wake up, see the error and learn much more, becoming an expert.

I'm sure you feel like you lost 8 years of your life due to this doctor, though. So, that's very tough.

In '97, I had positives from Igenex for lyme, babesia and an ehrlichia. Tests were ordered by my ND, though as my MD refused the correct tests. And when the correct tests were presented to the MD, she totally dismissed it.


So, the bottom line is bad doctors are just bad news. Move along as best you can to get well but alerting your local support group to that doctor, at the least.

As far a real legal action, you'd not have much to stand on since the IDSA position is so weak and they deny chronic lyme. Unless you have an excellent attorney and the means to pursue this.

At least, it would be good to have an attorney at least write a letter so that that doctor may know to take this more seriously for those who come along now.


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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
DebAz
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Hi THanks for the replies.

I did have many symptoms and she was being seen as the person to help with the severe pain part of things. She has past reports that showed from other doctors the various infections etc.

I think she must have suspected more.. so she ordered the test.. But why not tell me or go further?

And yes I have a CDC positive and reported case now.

And well. I am sad because well I think any legal action is not going to do me any good.

And on top of it I had left her for other reasons I did report to the Medical Board. Weird. The only time I have ever had to do this. She was prescribing tons of things that were obviously not needed and all I saw were salesman in her office taking her to lunch. As well she tried to do diagnosing of psychiatric conditions and did not tell me that either until I addressed it upon her adding more more meds that did not make sense.

Her only answer was that she saw me crying one day in the office. Hmmm I was upset at her and told her to tell me or refer me if she was feeling such things.

Instead she just wrote up a diagnosis of bi polar in my chart??
Upon complaining and writing her she deleted this diagnosis which I have never had and still do not have.

I have two adopted children who DO have this and I am well versed in the subject of mental illness and diagnosis criteria and as well medication and such.

So anyway.. Its the same person and I found some other patients I ran accross during times of Physical Therapy back then who said that happened to them to and they were told they had Bi Polar disorder because they had green eyes.. No joke.
And I have green eyes.. SO who knows.. Its all just weird to me.

I do not think she should be treating anyone.. but. I also have no energy to do much about it.

After all that I now come across the test and >. gosh I just felt upset by it all.

But I guess Move on is the best thing??

Then again I think of other patients that might suffer due to this sort of thing and things.. under one doctor? It is a bit scary to me...

I will have to really think this over..

D

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DebAz
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I am not sure if I should even be posting this info or not??
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karatelady
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Deb,

You could rate that doctor on this website:
RateMDs.com

I too went to a doctor for 6 years who assured me I didn't need to be tested for any viruses or bacteria.

Sandy

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DebAz
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Thank you.> I appreciate that very much.

I noticed they say that what you write you will be legally responsible for.? But you do not have to log in or tell your name or anything?

I am a little leary but did put in my report.

Deb

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sparkle7
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What a sad story. I saw many doctors who didn't even think to test for Lyme & I lived in a highly endemic area. I wished I could have sued.

Early treatment is key with Lyme. So many of us have had to suffer needlessly since we were not diagnosed & treated early...

It's very difficult with Lyme. There are alot of reasons for this maltreatment but I don't want to get into a big dissertation about it.

We have to fight on so many levels for descent treatment. It's very energy & time consuming.

There are alot of doctors I wish I could sue. I decided to spend the time researching ways to get better - instead.

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bettyg
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deb and all,

that is why it is IMPORTANT TO GET ALL COPIES OF ALL MEDICAL REPORTS, XRAYS, LABS, ETC. FROM EACH DR.

sign the RELEASE OF INFORMATION form required; my clinic charges me $15/yr. for my records, but it's worth it to me.

when i fought for ssdi, disability insurance, for having left work and it took 5 yrs.; so many of my reports were INACCURATE, and i couldn't get them corrected by that late date!! [toilet]


deb, on left side are legal abstracts of people winning.

if you file, yes, delete this post, and don't talk about it on public board; other side can track everything!

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JKMMC09
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Deb, The same thing happened with my daughter. We found a pos. Lyme test in her records from years ago.

I think you should consult a lawyer. I've thought about it....

Also, when I initially was searching for info. about this when it happened to my daughter, I think I remember seeing a post on the EmpireState Lyme site about this, I think the woman who runs the organization had this happen to her. Maybe you can contact her for advise.

http://www.empirestatelymediseaseassociation.org/

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Keebler
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Deb,

This story is so old here:

Patient is sick, very sick. Patient gets no help from doctor. Patient cries due to severe pain and illness. Patient is dx as bi-polar and put on heavy drugs. Patient gets worse.

So sad to hear that you also had that experience. It is classic with lyme patients - even those with positive labs. Horrific but very common. I was one of those, too. Crying is the kiss of death. And, gee, who wouldn't be a bit depressed or sad at such a devastating illness, anyway?

And, the IDSA is steering very hard trying to show that all patients who "think" they have chronic lyme are depressed and nothing more. So, it is actually getting much worse and their recent articles are clear in their intent.


Here's a pat on the back to you and all patients who've had to crawl back up off the floor with very little help. And here's to all the good doctors who have studied and who are doing good things for patients in this very puzzling field.


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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
DebAz
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WOW..

Those are intense stories.

Ironically. I filed for SSDI and all by myself. And after many extensive tests from various other doctors .. (i did not know of her tests like I said I did not think to even look at hers.. ".. Well
I gathered enough from having such severe CFS and FMS and other co infections such as Valley Fever and EBV and Severe Pain that was documented. And a few other infections that were not as severe but existing.

I put together a full binder. I had it all sorted with and index and my own story in my own writing. it was very organized and very pretty and easy to read. I even made references by numbering the tests results and putting in foot notes so they did not have to dig around.

I was approved my first time applying.

now when i get reviewed I keep just adding to the diagnosis because they do keep adding up.

At that time I did not have Lyme or Bart or Babs or anything.

Now I do.. in addition

Well as we know.. FMS and CFS are are those things...

But as well i have back issues and are chronic and debilitating.

I have heard so many SSDI horror stories and I am happy and proud I was able to be approved first time applying.

I did put in many hours to my application and I think that sometimes the presentation is 1/2 the battle.

Thats what I always taught my kids and when they did a project that is what got the A instead of the B. They always did one more thing to make it LOOK better.. and STAND out.

Just my perspective.

And well.. THANKS for the stories.

Sounds like I am not alone..

My bigger issue is that I could have been starting abx treatment so much sooner....

Deb

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Keebler
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Deb,

Good thing your presentation helped. Once I managed (over many months) to write one very good letter explaining why I needed certain help with housing. It was so good that the agency to which I had asked for helped denied me because they said I had skill and obviously would not fit their criteria for needing help if I was so skilled.


So, a professional presentation can backfire depending upon the personality of who is making decisions.

However, finding the right advocate can help, too. After being denied I went to my local congress representative - and they pressured the housing authority to move me to quieter quarters.

Without the help of one of the rep's staff, I would not be alive now as I could not have survived the noise of where I was living.


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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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