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» LymeNet Flash » Questions and Discussion » General Support » So disheartening.

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Author Topic: So disheartening.
momindeep
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The county health nurse called to talk to my husband...we assume because his LLMD has to file Lyme cases into a patient's county of residence.

Soooo, the nurse says to my husband...we live in quite a endemic area and then asks him when he was to Canada or out West recently?...

My husband says he hasn't been to either recently and asked why she asked.

Her reply was...well that is where you would of gotten bit by a tick if you have Lyme Disease...are you kidding me!!!

This is wrong on so many levels it just blows my mind.

People...we are in serious trouble if this is the recent thought process. WTH?

Posts: 1511 | From Glenwood City WI | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
Tincup
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I am horrified this happened to you all. How stupid can these people be?

There is a ongoing trend to blame somewhere else (not in MY backyard) for the Lyme disease problems in certain areas. Some states actually are reporting cases in this fashion...

2016
10 cases in Florida
9 acquired out of state

Health Department employees, some are just this ignorant, but many are being forced by the CDC and IDSA idiots to do these crazy things. Many feel they would lose their jobs if they didn't obey the upper level idiots, but they do know better.

This experience would make a very good and short "Letter To The Editor" of your local paper. A chance to educate and point out what is going on.

We can fume and complain and kick and scream, but unless we take action everywhere we find this garbage, it isn't going to change.

--------------------
www.TreatTheBite.com
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www.MarylandLyme.org
www.LymeDoc.org

Posts: 20325 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Really delusional if they think there isn't any Lyme disease in Wisconsin.

[Mad]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94685 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
momindeep
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Tutu...it creeps me out.
Posts: 1511 | From Glenwood City WI | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
Blymey919
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I can't tell you how many times this has happened to me and my husband when we've been to family doctors or hospitals over the years...

Only we're in California and got asked "So you got Lyme disease when you were visiting back East?"

Hello. Lyme is everywhere.

We now just bring a paper with some condensed information about Lyme, how it can be transmitted sexually, some interesting scientific studies, and so on...

The reaction is always "OMG I had no idea!"

It just blows your mind how ignorant the medical community is to tick-borne infections. Scarey. Depressing.

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Keebler
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-
This has happened in Oregon, too if a doctor is so bold as to actually report a case of lyme.

The reporting agency has - more than once - even tried to talk / demand doctors into reversing their diagnosis because "there is just no lyme in Oregon" according to state agencies.

The Oregon Medical Board rules in this issue, though, and they are heavy handed with their hostility regarding lyme. They direct the other agencies.

They have allowed a few "official" cases to make it onto some of the reporting charts (likely claiming must have been out of state and didn't remember) but they have turned away many more.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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I am convinced it's not so much as [any state that denies] agency being is delusional but sheer dismissal with full intent. They may know it's there yet still will not allow patients to be properly assessed / treated.

It's beyond just malpractice in my eyes, it's criminal intent. They may be ignorant, though, to just how very serious this can be and they stop with what the IDSA / CDC write about it so they have not been exposed to the real education on the matter.

Still woefully incompetent and when it involves "active" non-action regarding research / study / education, that's criminal harm to others, IMO. And it's all coming from the IDSA, you can bet on that. They have strong arms in all states.

Wisconsin's state TRAVEL industry may also be involved in this myth.
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[ 03-16-2016, 03:52 PM: Message edited by: Keebler ]

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

For what it's worth, I first got ill (likely misdiagnosed) in the Milwaukee area in 1971, autumn. Parks just north of the city on the lake.

I either also had mono but clearly lyme & bartonella, now looking back. I was a college student and the health office on campus would hand out antibiotics here and there but when I reported that I was just so dizzy, the doctor said "well, aren't all blonds dizzy?" and just shuffled me along.

The term, the disease would not yet be "discovered" until around '77 where I got so very ill again in Boston, where they should have known more as my symptoms were a perfect match for lyme.

I was kicked out of doctor's office for crying and asking "then, why do I feel like s*** all the time?" -- doctor said there "will be no swearing in this office" and shut me out.
-

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

If that agency calls back - be sure that you and your husband are both aware that, sometimes, they are checking on treatment. And, sometimes, they are fishing for ammunition against doctors who treat lyme for "too long" or with "too many drugs" which in their book would be more than a single Rx, for a week or so.

Practice some kind of response in case you ever get such a call. Usually, something to the tune of [with very innocent tone as to not stir their pot]

not sure why they'd be asking as it's not the concern of anyone else other than just "yes, getting treated" and it's between him and the treating doctor in whom you have high confidence. "The doctor has it all taken care of. Thanks for being sure we followed up on that. Good bye"
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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Wow, this just stirs the pot and thoughts keep popping up.

You might get that caller's name and then talk to your state & local lyme support groups asking for

some materials to mail both that caller and also a set for their office staff. It could be that the caller is just doing their job and passing on what they've been told.

This could be a chance for some education if that is the case and the caller is open to learn. At the worst, they are IDSA puppets and will throw it in the trash. But maybe it could make an impression.

I would not include your name, though, see if the state or local lyme group would agree to use their return address with some kind of note saying

"over the past months, we understand that someone from your agency has remarked to a patient who had a case lyme reported that there are no ticks in Wisconsin that carry lyme.

Sadly, too many have come to believe that but here is some detail about some new facts that have come to light."

Your local and state lyme support leaders should be made aware of this and they may want to consider other ways to include the caller / agency in their education awareness efforts / relationship building efforts.

Your husband should be sure to call his LLMD's office and just let them be aware of this call you received as it's a head's up for them if their diagnosis is being challenged, even with a "no lyme in this state" mindset.
-

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momindeep
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Good ideas Keebler. I will think on these things. I will also talk to my husband to be vigilant in protecting his LLMD...but he is pretty aware and also a man of few words.

I cannot express how this has POed me...after ALL these years and we have this...this disingenuous situation which is rooted at best with ignorant conjecture and worst with diabolical intent. Shesh

Posts: 1511 | From Glenwood City WI | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
Keebler
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I find it ridiculous that, amid severe illness, we are called upon to be the liasons for education and do so in a way that will not ruffle any feathers

of those who are undereducated / misinformed (at the kinder end of that scale) and also figure out ways to work around the solid road block figures.

We are to be teachers, journalists, beacons of light. Ugh. It's one thing to offer support to other travelers but to have to be a voice for education and get it right - it's just such a weight to bear in addition to all the others lobbed onto patients with TBD.

Yet, where we can speak with a good voice to those who may listen, every little bit helps.
-

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Lymetoo
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Did your husband give them an earful?

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94685 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
momindeep
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Not really...he just said that the CDC refuses to acknowledge the truth about Lyme Disease. I think he was caught off guard with ignorance.

Even tho our daughter had Lyme Disease for so long...my husband wasn't totally aware of the deception going on...actually he thought I was nuts myself thinking our daughter had Lyme when so many doctors pooh poohed it.

Things did change when I took her out East and got a diagnosis there.

He never got into the politics of Lyme...after her dx he trusted me with all decisions pertaining to her as he is trusting me with his own care now.

We had discord in our marriage because of me bucking the system...but in his defense, he never said I could not keep searching for the answer nor took financial support away to do so...and that I was/am grateful for.

He is learning now...thank goodness he is a quick study.

Posts: 1511 | From Glenwood City WI | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
droid1226
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I was called by a county nurse straight up asking me "when were you in Connecticut?" because I tested positive for lyme disease. She said it was very important for them to monitor because it was extremely rare.

I told her to simply check with the CDC which she was unaware of the update of 300,000 annually. She had claimed "up to" does not mean that those are actual cases. She said I was only the 4th case she'd ever seen. Which is impossible because I know a few dozen & it's a densely populated county. Idk where the disconnect is.

To her credit she listened to my diatribe for about 15 minutes, although she sounded very skeptical.
She was unaware that there were any cases outside of CT & couldn't believe that it had hit the west coast.

A lot of our health care workers are from a different generation, both Dr's & nurses. They're institutionalized & apparently don't keep updated on new information. Also, they're the same people teaching the new generation at med schools.

Accurate testing should be the number one priority imo. That would eliminate all discussions

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Lymetoo
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Droid, that's pitiful. Your assessment of the situation is right on.

momindeep .. I'm thankful too that your husband didn't buck you too much and that your daughter is now doing well. Hopefully, you can get hubby well very soon!

--------------------
--Lymetutu--
Opinions, not medical advice!

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WPinVA
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I remember being asked if I'd been up in N. England recently back when I was diagnosed. And I lived in an area that even the CDC considers endemic.

Makes me really angry how much attention Zika is getting and it's not even here yet, and meanwhile Lyme is ignored...

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Catgirl
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It's because of idsa's crap guidelines (conflicts of interest). They are the root of the problem.

They have to get changed, and their members should not be paid for tests that they actually develop to substantiate their own single celled point of view and income.

Droid is right too, healthcare workers have been institutionalized for so long. It's hard for them to grasp (can't think outside the box).

Ego slips in there as well. No one in the medical profession likes that their patients might know more than they do (it's embarrassing for them, so their brains deny it). That and some are trained now to believe that lyme patients actually want to believe they have lyme (lol)! Again, it's their egos running them.

Keeping stuff in the public eye helps. Everything everyone does helps. I hear what you're saying though, it's old and frustrating.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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randibear
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now y'all know there ain't no lyme in texas. nope, none at all.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
MADDOG
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Well, I actually got Lyme in Kentucky not Ohio.

Mammoth cave area is so terribly infected!!!!!!

Probably also underground germ warfare lab there.

I have never found a deer tick here were I live.

But the giant farms are spraying huge bunches of chems. here.

Kill the ticks.

They will give you cancer!!!!!!!

Fly over you with a airplane and drop hazardous waste on you.

The soil is so dead, no bacteria or anything can live in there.

Then the neighbors nuke the lawn ,NO LIFE LEFT!!!

The lake now has blue green algae in it.

WELL ?

What is my point?

I have no idea.

MADDOG

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momindeep
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Overwhelming...isn't it MADDOG?
Posts: 1511 | From Glenwood City WI | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
   

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