quote:

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Originally posted by luvema:
She said she only believes in lyme tests that are through the CDC, and i tested negative through cdc, but positive with igenex.

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The CDC does not do Lyme testing.
 

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Posted by luvema (Member # 26650) on :
 
Thanks Lax Mom and everyone else.

For some reason it puts me down when people tell me maybe it's something else. It always makes me feel, what if it is something else, after all; I am the one who found out that my symptoms can be caused to lyme, and I always think what If I was wrong.

It just breaks my heart how difficult this is, and how medical professionals are so ignorant about it.
 

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Posted by lax mom (Member # 38743) on :
 
Thank goodness you were the one who found it!

Your LLMD would NOT risk his/her license, in today's polical environment, by putting you on IV antibiotics if he/she didn't believe wholeheartedly that you have Lyme. Take comfort in that.

I, for one, am so relieved to come on here today and read that you finally got IV antibiotics!
 

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Posted by beaches (Member # 38251) on :
 
Ema, Boxermom is 100% correct.

This woman had NO right at all to question you or ask about your diagnosis.

She is your service provider and she is getting paid to do that job and that job only.

Her job does not entail interrogating you, and she had NO RIGHT to do so. Situations like these are what makes us advocate for ourselves, and eventually others.

This nurse was very clearly out of line. You need to pick up the phone and tell your infusion company you are not pleased with how this nurse, whose job is to administer your medication, inappropriately inserted herself into medical decisions made by your physicians, which is clearly none of her business.

I am so glad to hear you are on IV, but saddened that you had this encounter.

Please learn to advocate for yourself in these situations. Young people like you need to learn how to do this. I know it's so very hard to do that when you aren't feeling well. And it's hard when your family is "iffy" on things. If you need more help, old ladies like me will chime in.

Good luck and feel better soon!
 

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Posted by luvema (Member # 26650) on :
 
Yeah you guys are right.

The insurance agreed to cover 28 days, I am not sure if it'll cover any further.

Just took my first round of medication, it made me so dizzy and it made my eyes feel very weird like they started moving on their own for a bit....
 

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Posted by beaches (Member # 38251) on :
 
No surprise that ins agreed to cover just 28 days. That's typical.

Be sure to drink a lots and lots of water with freshly squeezed lemon to help.

Keep posting for more help Ema.
 

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Posted by Catgirl (Member # 31149) on :
 
Don't second guess yourself. She worked for an ID doc for 40 years. They are clueless about lyme. I got lyme 50 years ago in CA. It was a milder version than it is today though.

Lyme is all over the planet. We are just the lucky few who have figured it out. At least we can work on our lyme and co infections. We all had to open our minds to get to this point. Hopefully, more will follow. It's the toxins, heavy metals and EMFs that are speeding up the process, which is why we all feel the way we do.

Remember, ILADS docs are cutting edge in this field. Ignore the clueless naysayers. They can't help it (closed minded).

Hang in there!
 

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Posted by Rumigirl (Member # 15091) on :
 
As everyone else has said, it is so WRONG for her to have done that!! She was "practicing medicine without a license to do so!!"' Not to

mention without your permission, your doc's permission, or your family's permission! That kind of behavior can land someone in the

clinker---not that you are looking to sue. Just to point out that it is illegal, beyond unprofessional and ignorant.

Time to wear teflon (figuratively). You can request a different nurse for next time, and tell the infusion company what you object to, and what will or will not be tolerated.

Wow, sadly, this is making you grow up fast.

She and her cohorts will be all too willing to think it's fine for people to suffer and die from all the neurological conditions that

so many have with palliative meds only (meds that only cover up the symptoms, and just barely do that.

That won't be you, however!! Be a lion, and don't listen to the donkey braying!
 

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Posted by Judie (Member # 38323) on :
 
"She is there to provide a service. She has NO RIGHT to question your diagnosis!!"

I agree. If there's a complaint number for the hospital/clinic, I'd report her.

Some people who have been in the medical industry for several years become too relaxed about what they say and can really cross the line. She needs an authority figure to set her straight on what's appropriate and what is not.

Believe me, if she's making you feel bad, she's making others feel bad too. The more complaints, the more likely action will be taken.
 

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Posted by faithful777 (Member # 22872) on :
 
Boy would that made me see red!!! I would politely tell her to keep her opinions to herself.

She is not a doctor and has no business giving you the third degree when she is there to help you with your IV only.

You can tell the nursing service that you don't want her coming out again. They will send someone else next time.
 

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Posted by hopingandpraying (Member # 9256) on :
 
How ignorant and rude for such comments! I'd definitely request another nurse.

I would also tell her she needs to educate herself about Lyme Disease by viewing "Under Our Skin" for free on www.hulu.com and reading Pamela Weintraub's book, "Cure Unknown".

That would set her straight, hopefully (but don't hold your breath!!).
 

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Posted by lax mom (Member # 38743) on :
 
ema: BTW, my husband's insurance company covered 4 months of IV. 4 mos was all he needed and he was a very bad case (prior steroids and all).

They never denied him. They only approved it one month at a time. So, don't fret yet.
 

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Posted by Rumigirl (Member # 15091) on :
 
But also look into your options if they do deny more than 1 month, so you can spring into action in that case.
 

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Posted by OtterJ (Member # 30701) on :
 
I agree with BoxerMom, this is not the nurse's place! I have had asthma since I was a baby and since they couldn't see asthma in a microscope,

I had years and years of disbelief from profesionals, so, your nurse's snarky attitude is supposed to help you? I don't think so.

I tested CDC positive through Stonybrook University's lab. Later, from a snarky infectious disease doc, he retested me with the "new, improved super ELISA".

It of course was negative after 6 years. So, you can be tested and re-tested, but people are going to believe what they want to believe.

Luvema, you have lyme. Unfortunately, you have to deal with bad medical professionals that question that diagnosis. Let this pass and focus on treatment. Save your fight for getting more insurance coverage. I know you will get better, it just takes time.

[ 06-04-2013, 04:25 PM: Message edited by: Robin123 ]
 

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Posted by Robin123 (Member # 9197) on :
 
First of all, as others have said here, she violated boundaries. She is not your doctor. She is probably upsetting others as well. I am pming you.

Second, we have documentation of Lyme all over the state and the CA Dept of Public Health knows that too. Even they could tell her that, if she were to contact them.

Relevant Touched by Lyme blog days:
www.lymedisease.org/news/touchedbylyme/66.html, as already referenced above here. Even that one is outdated - probably all counties have infected ticks.

I'm in San Francisco, which is shown as a yellow color, meaning ticks found. Vermillion means infected-ticks found. We have Lyme cases here and yet we're not shown as vermillion.

Also:
www.lymedisease.org/news/touchedbylyme/43.html and /23.html - telling about CA Lyme cases.

So you need to be prepared for the two sides of this narrative - ours that looks at the science and the clinical impacts of Lyme and co's, and the other side which is trying to keep a lid on the epidemic.

One of the ways they squelched reporting happened at the Dearborn, MI gathering in 1995 when they changed the CDC definition of positive to a test showing at least five positive antibody bands.

Well, when I came in positive, I had four bands, so I was IGeneX positive and CDC negative, which very much confused my primary doc as he asked me how I could be both positive and negative at the same time. Sorta like being pregnant and not pregnant at the same time. It's absurd! So my case is still not counted.

Just need you to understand it's politics and not scientific nor social truth at this point, that what they say is the opposite of what's happening.

When dealing with politics like this, I like to consider who the other party MIGHT listen to. I think that's important - it's like thinking about the step they MIGHT take in the direction of getting educated.

I think they're fairly far away from being able to hear LLMDs at this point, but they might handle a middle ground solution,

which is to ask them to talk with the CA Dept of Public Health to discuss the state's reality of Lyme disease and co-infections,

since the CA DPH are also in the business of tracking it and dealing with it, although they do not record all the cases we have.
 

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Posted by Keebler (Member # 12673) on :
 
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It's important that you realize many will doubt you. You have to stay strong because you are living with the truth about lyme.

They don't have all the details and it's really none of their business, anyway. Have a few links for them, printed out on a page.

[saying this to save energy as it's so exhausting] If you are not up to it, do not engage their discussion if they are not educated in this matter but gently guide them to where they can learn the truth -- it's not your job.

Even if they are interested and you are willing, it's very taxing . . . be nice . . . share details on where they can learn more.

You must focus on taking care of yourself so monitor your energy output.

Your LLMD also needs to know that this nurse is not well enough educated for your needs. Ask for one who is. This need not be a hostile request and I think even the uneducated nurse would admit she would not want a professional treating her who knew nothing about her case.

Just very matter of fact, letting the nurse know that her questions are very common, understandable and highlight the lack of education of medical staff, everywhere.

As she learns more, she will be better equiped to then care for patients with lyme. That time just may not be right now. Or it may be if she is open to learning - still, it would be best if you have someone who is up to speed. The learning curve is very steep.
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[ 06-05-2013, 01:52 PM: Message edited by: Keebler ]
 

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Posted by Dogsandcats (Member # 28544) on :
 
Like the others said - you have to recognize when people are "official there is no Lyme diagnostic doctors" - no matter who they are...and ignore them quickly.

I got to the point where I would just change the subject quickly. Sometimes I would smile and stare at them.....

Sorry your family heard -

Hugs
 

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Posted by Eight Legs Bad (Member # 13680) on :
 
At the risk of making myself unpopular, I'd like to say a word or two in defence of the ignorant nurse.

A nurse **does** have the right to question a diagnosis, just as a doctor, or any health professional does, if they observe something or are aware of something that makes them reasonably think the diagnosis is wrong. Indeed in some cases, a nurse would not only have the right, but professionally speaking, the obligation.

Imagine if, for example, the situation was reversed: a doctor following Eugene Shapiro's perverse diktat on chronic Lyme diagnoses your child with a psychosomatic disorder. During routine observations, the nurse notices various signs which cannot possibly be psychosomatic.She therefore calls the doctor and informs him, calling into question his diagnosis.

That is what a nurse behaving professionally should do,and the doctor,likewise, should be prepared to carry out further investigations and reconsider his diagnosis,all in the best interests of the patient.

What I would suggest is that you approach her in a non-confrontational way,and simply supply her with evidence - ideally from the peer-reviewed literature.

For example,the paper from Humair 2001 which found that birds spread Lyme ticks round the world. And any California related info you may have.

Most ordinary nurses and doctors are trying to do a good job - the problem lies with bodies like NIH,CDC, PHE here in the UK etc - the public health bodies who are disseminating totally flawed information to the health professions.

If I had met you 15 years ago as a nurse, I might have said the same wrong things to you. Today I know the truth about Lyme - but most health professionals simply don't.

Elena
 

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Posted by Keebler (Member # 12673) on :
 
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Elana makes some excellent points. The tone, the manner in how this is handles is very important.

We can't put all the entire IDSA "attitude" onto each new person we meet who has just not had the chance to learn about lyme. In our shock we can roll so many bad experiences and a world of disappointment onto the back of one person who just happens to be representing that comglomerate of lyme ignorance - and maybe through no fault of their own.

Be sure to take a breathe . . . and then point her to the sources where she can learn more.

I still think it's not the patient's responsibitily to educate and offer ALL detail you can, as may be tempting but too exhausting -- still, you can sure turn on light and give her some great links and connect her with a Lyme Disease.org

You still have a right to have a nurse who is LL right now, up to speed. That is reasonable, if possible.
-
 

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Posted by Sammi (Member # 110) on :
 
I agree that if a nurse sees something concerning, the doctor should be notified. A nurse who asks a person if their diagnosis is real, regardless of the diagnosis, is very unprofessional in my opinion. I wonder if her degree is real.
 

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Posted by Keebler (Member # 12673) on :
 
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Yes, Sammi sums that up better. My brain just leaped over that part of it . . . .

The good points I was talking about was how we approach the matter - the tone we take may be able to open door or slam it shut.

I have that "if only I could SAY this better, EXPLAIN it more clearly, they'd see truth and all would be right with the world" tendency.

I sure know if a nurse asked me that "real" question (as have various doctor and family), I would feel she already slammed that door right on my face -- but also that she had no clue how to be a proper nurse for my case.
-
 

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Posted by luvema (Member # 26650) on :
 
I agree with elena at some points.

As a future nurse I would do the same thing if i were concerned about a diagnosis, but with this nurse, she didnt even talk to me or say hello. The first thing she said when she walked into the door are you sure your lyme disease is real.

Then she asked where I got it, when i said here she over reacted. Then she said most people just diagnoise themselves with lyme when they have something else.

Then she asked what was my religion. I didn't understand how that was relevant.

Anyway, I apperciated her help, and I am not blamimg her for something she didn't know. We are all humans and none of us know everything.
 

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Posted by BoxerMom (Member # 25251) on :
 
Yes, but many of us actually know how to BEHAVE!

There are polite ways to convey concern. You would not be upset if she had behaved professionally and respectfully toward you.

That is the problem.
 

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Posted by Keebler (Member # 12673) on :
 
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"she asked what was my religion"

That is NOT professional, relevant or proper. That can be such a loaded question for many reasons if your religious stance is not the same as hers.

I once had a medical professional tell me I was not praying the right way. A care giver told me that I was being punished by god - and another medical person told me I was not getting better because I failed to take responsibility for something terrible I must have done in a past life.

None of this is anyone's business. My personal beliefs should not be on the table for anyone to question.

I think she needs to be reported on several counts. If she is this way to you, how is she to others?
-
 

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Posted by Keebler (Member # 12673) on :
 
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With all the things she said and her manner, it seems that an educated discussion about lyme is not likely.

I hope you never have to see her again. There are other nurses they can send. Hopefully, your LLMD will have some names for you from the agency or group.

Still, it would be nice to at least get to her a few good links and hope she may read them.

I can't help but wonder how she acquired such a terrible approach. Still, there is no excuse for that behavior and how it clobbers the patient when they are at a low point.

Stay strong.
-
 

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Posted by Judie (Member # 38323) on :
 
Ema, didn't you recently have a CDC positive Lyme test?

"Then she said most people just diagnoise themselves with lyme when they have something else. "

LOL. That's the EXACT same line that an immunologist said to me. He said something like most people with Lyme don't know it and the one's that think they have it don't.

He then REFUSED to do a Lyme test on me when I asked. I tested CDC positive with another doc later on.

Show the nurse your test results and it will hopefully make her shut up. I carry my test results to EVERY new encounter I have with the healthcare industry at this point (I mean everyone, even gyno appointments).

This stops people in their tracks and they don't question me again.
 

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Posted by luvema (Member # 26650) on :
 
Those were the only issues I had with her. She came back last night and didn't talk that way, and everything was fine. Oh well.

My last lyme test was inconclusive

I don't know what inconclusive mean.
 

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Posted by Keebler (Member # 12673) on :
 
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Inconclusive is the CDC's way to ignore the facts. A "IND" shows activity but not as strong on the results.

There are many reasons why the test may be reading it weak but, make no mistake, it has nothing to do with how ill the patient can be. The tests have their limits. That is "sees" it at all is proof.

Do not discuss the tests with the nurse. You have the diagnosis - taken in great care over time with an educated doctor.

Please read the Western Blot explanation here:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

- Also can explain why some tests can show "IND"
-
 

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Posted by luvema (Member # 26650) on :
 
Thank you so much Keebler.

According to the nurse, it's easy to get a false positive and hard to get a false negative. Is that true? How easy is it to get a false positive?
 

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Posted by Judie (Member # 38323) on :
 
"According to the nurse, it's easy to get a false positive and hard to get a false negative. Is that true? How easy is it to get a false positive?"

She's wrong, it's the opposite. She's ignorant. Find another nurse.
 

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Posted by Sammi (Member # 110) on :
 
I agree with Judie.

I think the nurse needs to concentrate on her job and keep her comments to herself.
 

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Posted by Keebler (Member # 12673) on :
 
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Get a different nurse. It's important for SO many reasons.

As Judie, explains, she is dead wrong and ignorant about your medical condition. IMO, she should be released from your case. You need someone who is LL so they know what they are doing.

It's clear that if a problem arises, this nurse may not have the specific knowledge required.
-
 

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Posted by Rumigirl (Member # 15091) on :
 
Even if you don't get a LL nurse, you can at least get one who does her job without rude, unprofessional comments and questions.

Asking about your religion?? Unreal!!

All the other stuff she said---also unreal. Totally wrong. Even if she was better the second time, if I were you, I'd get another nurse pronto. That's one of the worst stories I've heard in a long time attitude-wise.

BTW, Keebler, I've been asked/told the same blasted, horrible questions and comments about having caused whatever by supposed horrible actions in a past life, etc. Or that it was all

psychological (we've all gotten that one, I think). Unreal. Just wait until these same people get a taste of their own medicine someday.
 

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Posted by girl (Member # 18022) on :
 
Next time you see her you should ask her: "Are you sure you're really a nurse?"
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by girl:
Next time you see her you should ask her: "Are you sure you're really a nurse?"

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Posted by Keebler (Member # 12673) on :
 
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As she questions the diagnosis and need for treatment, if she does come back - or really with any IV, be sure to SEE the actual Rx vial, see it drawn out, mixed or whatever has to be done so you know all the steps are taken.

Make note of any LOT NUMBERS and keep in your file. This should be done with all IVs - the Rx and solution bags.

Over the past few months, there have been some issues with these so it's important to keep your records (for a couple months, at least) of the batch or lot numbers and the pharmacy, all identifying details. And this would have nothing to do with a particular nurse but the supply source. Just in case.

I'm not sure of the exact phrase to use so that the nurse would not take offense to this - other than you've read that it's just a really good practice for everyone.

It's always a good idea to inspect the vial label (or any Rx bottle and pills inside) and match them to the online photos at the MANUFACTURER's website.

There are counterfeits that can fool even pharmacists. It's just a good practice to always check everything new that we get.
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[ 06-06-2013, 03:50 PM: Message edited by: Keebler ]
 

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Posted by Crawgir1 (Member # 40229) on :
 
They say that LD isn't in South Carolina either, yet I know people that have DOGS that have it, I see deer every day, and deer ticks!
 

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Posted by randibear (Member # 11290) on :
 
to be blunt, she's an ass....
 

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Posted by beaches (Member # 38251) on :
 
Ema, do yourself a favor and request another nurse.

Now that she has stepped over yet another boundary, who knows what she will come up with next.

And you do not need the stress of wondering about that.

The next time anyone asks you a very personal question, the best response is to smile and say "why do you ask?" And if they offer some lame explanation like "just curious" you can say "that's irrelevent to the matter at hand."

Or you could just tilt your head to the side and have a puzzled look on your face and walk away (this takes years of practice).

Judie, I do not believe that ANYONE other than personal physicians have a right to examine the my medical records or those of my family.

We don't owe anyone an explanation. And we have the right to maintain the privacy of our medical records.

PS Randi summed things up pretty well!
 

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Posted by daphnesmom1 (Member # 39433) on :
 
luvema, it's very important for you, like all of us with Lyme to surround ourselves with supportive people who are willing to accept us as we are. That includes medical "professionals" (and I use that word loosely here).

I have moved on to other GP's because they simply don't think that Chronic Lyme exists. I have changed Gyno's and Gastro's for the same reason. I refuse to feel like I have to defend myself and my illness, because I don't.

And neither do you. It's not good for the stress this disease already inflicts upon us. You have enough going on right now, and don't need to defend yourself to an IV nurse or anyone else.

I would see how it goes. If she comes back and still has the same attitude, I would make the call and rid myself of her. It's not worth the pressure you are already feeling to have her around.
 

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Posted by luvema (Member # 26650) on :
 
Thank you guys.

Well good I wouldnt have to see her much anyway.

I picked up how to mix the medications and I already do that on my own. Now, i'll just have to learn to do the dressing change.
 

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Posted by Keebler (Member # 12673) on :
 
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Ema,

You're becoming a pro! Glad to hear you are in charge of your own Rx mixing. Hope the rest of all this goes as swimmingly as possible.

Take care.
-
 

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Posted by luvema (Member # 26650) on :
 
Thank you keebler.
You're amazing, you helped me so much!
 

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Posted by Rumigirl (Member # 15091) on :
 
I don't think that you can do the dressing change yourself, because you need 2 hands! Assuming that you have a PICC line on your arm. But a family member can be taught how to do it. It's not that hard.

Enough already with this blasted nurse! Onward & upward. I still cannot believe the things she said and asked of you. Appalling.

I've more than had my share of horrific nurses---but not all of them, of course.
 

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Posted by koo (Member # 30462) on :
 
I can't sift through all these responses but I am assuming this is through a home health infusion service?

I used to be a marketer for a company that provided infusion services among other things. It is an extremely competitive business and they are fighting for your business. And depending on the ABX, it is very profitable (not vancomycin though).

You have two options - one is to change companies..the other is to call the DIRECTOR of the company you are using, not the nurse's supervisor. The director, CEO, whatever they call it at this particular company, is more concerned about the fact they have a patient on board.

If they have a director of marketing or business development, I would make sure to talk to that person as well. There is nothing they hate more than the possibility of losing business to poor customer service.
 

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Posted by Keebler (Member # 12673) on :
 
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con�done

1. Accept and allow (behavior that is considered morally wrong or offensive) to continue.

2. Approve or sanction (something), esp. with reluctance.

--------

Adding my own note: silence & inaction condones behavior and perpetuates it (if not with you, with others).

The issue is not solved by being silent and hoping this current smoother wave will continue. If may for you, but it won't for others unless the issue is brought to light in a professional manner with the right supervisors.

Now, you may not have to do this, the doctor's office manager may be able to make the right call, with just one well phrased explanation for this issue to be corrected - and not repeated for you at another time or for anyone else.

"Corrected" really is about education. The LLMD's office manager may be the best person to offer "education" so that the nurse can learn more. This is not about scolding but about offering an educational opportunity.

I totally understand if you don't want to confront her (I hate confrontation and my body just crumbles when faced with that - partly due to adrenal dysfunction and nervous system issues form lyme)

We all so often just hope certain issues will go okay. But you've seen her "colors" -- I don't know how I could ever trust such a person, really.

Still, I do understand if you want to just keep this as quiet as posssible. But, for your own safety, I think it may be best to tell your doctor's office manager and have them make a call for you - for a different nurse who, you can be sure of and trust.
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[ 06-07-2013, 04:01 PM: Message edited by: Keebler ]
 

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Posted by Keebler (Member # 12673) on :
 
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I realize that you may not know what I mean by: "you have seen her "colors" . . . "

I tried to find a definition but can't, no matter how I phrase the search. Not sure if I can explain it.

This may be a regional colloquial term but to see one's "colors" means that you've gotten a glimpse of true character, thoughts, stance, attitude - who they really are about a particular issue.

Always pay attention when such a window has opened, even if just for a moment. Crucial detail may be revealed.

Trust can be strengthened, shaken or shattered when we get a glimpse of a person's true "colors" - regardless whether a personal, academic or professional relationship. Pay attention to what you see, hear, observe. It does matter.
-
 

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Posted by poppy (Member # 5355) on :
 
Your doctor can write an order that requires that you/family member or qualified friend be taught how to do infusing and dressing change. Then you will not need the expense and aggravation of someone else coming to do it.

Not everyone feels comfortable doing medical things, so choose your dressing change person carefully.

But then you will have to take on getting the drugs and supplies that you need, and dealing with insurance. Suggest that you get in touch with support groups, and join the CA yahoo lyme group to get help doing this.
 

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