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» LymeNet Flash » Questions and Discussion » Medical Questions » Did I Miss the Memo......

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Author Topic: Did I Miss the Memo......
Kayda
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Hi,

Just wondering if I missed the interoffice memo sent to every single medical dr. in the country that Lyme disease doesn't exist and if a patient comes to you for help, you are supposed to tell them Lyme is a myth and send them to a psychiatrist!

When I think back on all the drs. who TOTALLY misdiagnosed, mistreated me and then read about similar experiences here well, it seems to me there must have been a memo I missed somewhere along the way.

Even my very nice PCP who speaks out about alot of healthcare issues (he's from the old school) visibly shuddered and took a step back when the word Lyme was mentioned!

It's all so strange, isn't it?

Kayda

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LisaS
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i know, I picture them all sitting in a meeting with someone lecturing them on not to treat us. I just want one Dr to stand up and say, but WHY?

Why cant we treat them!!! I wonder if there is a memo? Couldnt someone get there hands on it?

What is this silent understanding between Drs? Didnt they all sign the same oath? I dont get

it. And I get tired of explaining to non-lymees the controversy in being treated. Why I wont go

to the ER when I feel like i cant breathe. Nobody can understand! It just makes us look further crazy!

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luvs2ride
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This is a very good question.

Just before I opened this thread I was mentally asking my doctor "What makes you so sure it isn't Lyme? How can you be sure with such poor tests?"

On the same note though, I do suspect (and have for a long time) that lyme is not my issue. Just as I don't see how the doctors can definitively rule it out, I also don't believe you guys and lyme doctors can definitively rule it in in absence of a positive blood test.

So, I think we all need to be objective in our assessment of our illness and acknowledge/explore other possible causes that either are THE cause or are contributing to the illnesses we have.

For me, I am sure of two things that tests have born out. I have serious heavy metal toxicity and systemic yeast infections.

I am not sure I have lyme.

Luvs

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When the Power of Love overcomes the Love of Power, there will be Peace.

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Geneal
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I remember sitting in three differnt "duck" offices asking the doctors if what I had could be Lyme.

Standard response of "You don't have that.", "We don't have that here.", "No, it couldn't be that."

It may me mad, mad, mad. I even lost it once and asked the duck how do you know.

Do you have x-ray vision and can see inside me and tell?

I even said it is my health insurance, I pay for the coverage, this doesn't come out of your pocket why not just run the test??!!!!

All I wanted these ducks to do was run the blood work on me for Lyme.

I think that Lyme is a "foreign" disease for many of these MD's. Something they can't "control".

They don't know, or care to know about it.

I think some of it is ego, some is lack of concern and some is just plain ignorance.

Even when I had a dx of Lyme and had to go back to see the Pulmonologist (who thought I had everything from pulmonary hypertension to CHF)

his response to me telling him that I have Lyme and a symptom of this disease is air-hunger or shortness of breath

was a very quick dismissal with rec's for a cardio-stress test.

Since my dx., I have sent letters to all the doctors who wouldn't run a WB on me and to the ER who clearly missed all the signs/symptoms of Lyme.

It was simple, concise and basically listed all symptoms of Lyme disease as well as documentation of it in our area.

It may not make a difference, but it did make me feel better.

Hang in there. Getting dx for me was one of the most stressful times of my life.

Those ducks almost had me convinced that I was losing my mind.

However, I listened to my body. Googled symptoms. Finally went to a walk-in clinic and convinced the doctor to pull a WB.


I am sending healing thoughts and prayers your way. Hope you find the answers you need to get well soon.

Geneal

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yourtroubl
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I guess you were out sick that day.

Because its true. I have experienced so much the last 3-4 weeks so much just because I have been diagnosed with Lyme. Experienced everything but treatment.

My Rheumy jumped, my neurologist told me it was too controversial for him to be involved in and no ID doc says he just does not think I have it even thought my Western Blot says so and Mayo will not retest Western Blot because Elisa is negative.

I am moving over to the Fibromyalgia Board to die I suppose.

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Geneal
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Dear Yourtroubl,

I am very worried about you. I've been there, but without any test to support my symptoms.

I thought, no, I knew I was dying and was afraid that my two young children would wake up in the morning and find their mother dead in bed.

Please hang in there. Make finding a LLMD today your priority.

Please don't leave this board. You are not alone.

There are many, many others here who have gone through what you are going through.

Please let us give you support and send you prayers for guidance and healing through this very difficult time.

As my LLMD said to me, "I will never give up on you, if you don't give up on me."

I am not giving up on you!!!

Geneal

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tory2457
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I agree with all that everyone's said to you Yourtrouble:

Please don't leave this board, or should I say don't stop searching for answers!

I am beginning to think the way to get around all the confusion in testing is this....

How are we supposed to test Positive when our antibodies are so clumped together that they don't recognize the bacteria?

Perhaps we as sick people should say to the ducks out there
"OF Course I tested NEGATIVE"
Give me 6 weeks of antibiotics; then test me!

Sounds too simple, but maybe it really is.

Continue to read Yourtrouble...connect the dots, try a course of ABX and see if you herx?!

I found personally, after having a MS diagnosis and a lot of Fibro symptoms over the years....that I harbor this nasty bug...I have been herxing consistently since being on ABX. And, BTW I was in "remission" when I started on my road to recovery..
I too had a NEGATIVE Western Blot..but with positive bands and IND bands.

Lyme is a clinical diagnosis....just like MS, and I can guess like Fibro is?...

Don't throw in the towel, just yet....

My best to you,
tory

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johnlyme1
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I ran into the same crap. But I did get one up on them. When I went back to a couple for follow up, after I had all of my testing done, I also had a myco test that showed a value of 1400 done by quest.

All of my infections went balistic after a bought of pneuomia. I never was the same. Not one of those ducks ever thought of seeing if the myco infection was at least out of my system.

When they saw the high level of myco on the test, the only response was, "that's interesting, that would explain some of your breathing difficulty, are you being treated?."

After one year of having pneuomia and still having breathing issues, would not one of those ducks think to see if there was still an infection in the system.

I think I would rather go to a vodo priest than ever go to a duck ever again.

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Truthfinder
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Truly, the most astounding riddle to me is that the Infectious Disease ``specialists'' are the LAST ones to know diddley-squat about the fastest growing INFECTIOUS DISEASE in the country.

Tracy

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time just take a few moments to say a prayer wherever you are.

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Lymetoo
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quote:
Originally posted by Truthfinder:
Truly, the most astounding riddle to me is that the Infectious Disease ``specialists'' are the LAST ones to know diddley-squat about the fastest growing INFECTIOUS DISEASE in the country.

That says it all, doesn't it!? [cussing] And they think they are SO SMART!!! [rant]

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

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Truthfinder
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I believe what you just said, Cave.

But as you pointed out, it is only at the "top levels" of the IDSA where the truth is known.

The regular rank and file of ID docs actually BELIEVE this stuff passed down to them from the upper eschelons. I don't think most of the docs know any better, do you?

Tracy

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time just take a few moments to say a prayer wherever you are.

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5dana8
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Originally posted by Truthfinder:" The regular rank and file of ID docs actually BELIEVE this stuff passed down to them from the upper eschelons. I don't think most of the docs know any better, do you?"

Tracy "
-------------------------------------------------

I agree-they don't know any better BUT...They don't want to know better....to put their reputations & egos on the line-God forbid. My GP doesn't want to treat lyme or know anything about it. Has told me so several times-other than maybe 2 weeks of doxy tops in extreme cases.

Pathedic [shake]

--------------------
5dana8

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Truthfinder
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Good point, Dana.

Tracy

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time just take a few moments to say a prayer wherever you are.

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LisaS
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Okay, so what if we dont all have Lyme. We all have 'something'. We all are experiencing the same symptoms, be it Lyme or not.

So what is it that we have? Maybe we have some disease that noone has discovered yet.

Nonetheless, it seems we improve on this treatment put together for Lyme. So who cares

what the 'label' we put on it is. We are all sick and being neglected by the medical profession.

Thats the bottom line.

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Nebula2005
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I think I did get one memo--

To my patient:

You're not as smart as you think you are. Where did you go to medical school? Stay off the internet.

I will NEVER disagree with another doctor's diagnosis unless it's Lyme Disease. You've made treating you impossible because you've already elliminated everything I suggest.

What did this other doctor say? And this one? Why didn't they know how to treat you? Pay me. Go away.

Oh, but don't give up hope. Medicine works miracles.

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Nebula2005
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I have looked and looked and looked and looked trying to find another explanation for my symptoms. Like this one--

My facial nerves constantly twitch from the inside of my nose to the back of my ears. It hurts. I've never had Bell's Palsy or ANY muscle weakness or paralysis. Therefore, I don't fit the duck's closed Lyme Facial Nerve Symptom box.

But it's not anything else, either.

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Carol in PA
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Actually, some doctors did get a memo like that.

A while back, I was reading some info about insurance companies, and found that some companies will tell a group of physicians that if they do not diagnose and treat Lyme Disease, that they will each receive a hefty bonus for the year.

It can range as high as ten to thirty thousand.

This puts alot of pressure on a doc.
If they diagnose and treat a case of Lyme, all the other docs in the group will also lose that bonus.

If this is true, it would explain some of the contortions doctors go through to deny Lyme in a patient.

Carol

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Lymetoo
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quote:
Originally posted by Carol in PA:
Actually, some doctors did get a memo like that.

A while back, I was reading some info about insurance companies, and found that some companies will tell a group of physicians that if they do not diagnose and treat Lyme Disease, that they will each receive a hefty bonus for the year.

It can range as high as ten to thirty thousand.

Probably TRUE!! I do know that HMO's lose money [in bonuses] every time they send someone to a specialist.

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

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johnlyme1
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Carol - would'nt that be unethical........LOL
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yourtroubl
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I can tell you that I was quite shocked when the neurologist told me that Lyme was too contoversial for him to treat.

Does make you wonder..

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sixgoofykids
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quote:
Originally posted by yourtroubl:
I can tell you that I was quite shocked when the neurologist told me that Lyme was too contoversial for him to treat.

Does make you wonder..

At least he was honest. Sounds like he believes Lyme is real, but just won't treat it. He's the best doc you've seen so far! LOL

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tory2457
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Perhaps what Carol in PA stated about bonus' is what this is all about?

It's been said that docs see Lyme docs for their own lyme treatment, but won't treat for lyme in their own offices??

hmmm....

Another reason we must be our own advocates!

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Lymetoo
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quote:
Originally posted by tory2457:
Perhaps what Carol in PA stated about bonus' is what this is all about?

But not all doctors work for an HMO. If they're independent it shouldn't matter.

It's true....Lyme is too controversial for drs to treat!

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

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Kayda
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Will the drs. who treat Lyme patients be ostracized by their peers?

I read a book about an MD who found out he was going to need open heart surgery. Since he was a heart surgeon and saw the failed outcomes of many of his patients, he decided there was no way he was going to go the surgical route. He turned to chelation instead. His wife divorced him because she couldn't take the pressure of being ostracized by their peers.

But, he had the last laugh. He did very well with chelation & never had to undergo the knife. He wrote a book about it and from what I understand started treating his patients much differently than before.

The decision over the Lyme Wars may ultimately end up in court similar to what happened with chiropractic care in the '80's.

Kayda

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Truthfinder
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Crimony! If what Carol says is true, it is not only unethical, it has to be illegal.

How can a doctor charge his patients for making a diagnosis based on the totality of symptoms, and then also be paid by the insurance companies NOT to make certain diagnoses?

Doesn't that have to violate some established laws?

Sounds clearly like bribery on the part of the insurance companies.

Where is our news media in this county? Where are the talking heads and new commentators? Where are our legislators? Why aren't they asking the tough questions and looking out for us folks out here?

Do we have to do everything ourselves anymore, including our own diagnoses?

Tracy

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Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time just take a few moments to say a prayer wherever you are.

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Lymetoo
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You're right, Tracy. Where is everyone? Why are we left out in the cold?

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

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cantgiveupyet
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I was told by a LLMD that one insurance company dictated which lab he used and he could NOT use another one, if he wanted to continue to be in network with them :-( He told me , with my insurance there was no way he would be able to treat me.

I also think a lot of ducs arent looking for chronic lyme symptoms like most of us have by the time we land in a dr office. I remember my duc saying but CNS involvement is late stage lyme, you couldnt have that.

Ive noticed when seeing a new dr that if I dont mention Lyme, im treated MUCH better. Very sad but true.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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bejoy
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I got the clear impression from an infectious disease physician that he wanted to treat me, but couldn't without a very very clear ELISA and WB. (I have almost every symptom, including multiple tick bites.) He suggested I go to a rheumy.

He was compassionate and gave me his email address and private cell phone number to discuss my situation. When I emailed with more evidence of my diagnosis, he didn't return my messages.

What kind of pressure could cause a kind and experienced physician to behave that way?

My husband asked for help from a neighbor friend/physician, fresh out of school, who taught microbiology. The neighbor sat me down and told me that I don't look like a Lyme patient, don't have Lyme, that it is a fad diagnosis, that research shows the only treatment is three months abx, and that it doesn't work.

He warned me that it would be wise to stop seeking a diagnosis for a condition that has no cure. I felt like I had been raped. What kind of pressure is causing this to be taught in med schools?

Carol, I would like to get more information about that bonus award from insurance companies.

Have any of you heard about insurance "bad faith?" There may just be room for a major class action law suit against HMO's who are putting this out.

I don't know much about the law in this arena, but I do know that with a bad faith award, insurance companies have to pay so much money out that it hurts them.

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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HEATHERKISS
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............... the memo also says,"if the patient has taken more than 2 months worth of antibiotics they are CURED." [rant]
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5dana8
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Post by Carol In Pa:

"Actually, some doctors did get a memo like that.

A while back, I was reading some info about insurance companies, and found that some companies will tell a group of physicians that if they do not diagnose and treat Lyme Disease, that they will each receive a hefty bonus for the year.

It can range as high as ten to thirty thousand.

This puts alot of pressure on a doc.
If they diagnose and treat a case of Lyme, all the other docs in the group will also lose that bonus.

If this is true, it would explain some of the contortions doctors go through to deny Lyme in a patient."

Carol
-------------------------------------------------


How do the doctors sleep at night? [shake]

--------------------
5dana8

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Carol in PA
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quote:
Originally posted by 5dana8:
Isn't that illegal?

Oh my, I'm sure the insurance companies would never do anything illegal.

[Roll Eyes]


I didn't save a link for that info. I read it a couple years ago. I haven't tried googling to find it again.

But it's on the web somewhere.

BTW, since you can't believe everything you read on the web, please don't make any rash decisions based on this.


Carol

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Doomer
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I had to write a check today for $215.00 to the ID doc that did nothing for me but say that I have had an extensive workup, nothing was wrong with me but that I needed to eliviate the stress in my life.

On the check I wrote in the remarks area that I have Lyme disease and thanks for nothing.

I also had several other specialists tell me how smart this ID doc was and so respected. Yuck.

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Geneal
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Loved the comment about the "fad" diagnosis.

That is almost funny.

Most people I know don't even know what Lyme is.

Okay, I'll admit it......I knew it was a tick born disease, but not much else until I had it.

Personally, if I were going for a Fad dx, I would have taken the Post Traumatic Stress Syndrome thing and run with it.

Now thats a VERY respectable diagnosis.

I suppose the medical community thought AIDs was a fad diagnosis too.

Thanks for making my evening with that comment.

Geneal

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Kayda
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But there are tons of illnesses that have no cure!

People get diagnosed with all sorts: diabetes, fibro, lupus, etc....

As far as insurance companies paying drs. If my dr. gives too many referrals to specialists for one patient, the insurance company will contact him or the office manager (the one who watches these things) & tell him he must cut back or face getting dropped from the network and blacklisted--never to be able to join again.

We must win the Lyme war and protect our drs.

I've noticed that since I told medical professionals that I'm treated much worse than before. Even the unexplained pain had respect in the medical community.

It's upside down. Something really needs to change.

I vote for sending out a new memo. We'll start with the teaching hospitals & medical schools. Declare it is true! Treatment is abx until the patient is well! All labs will be covered! Insurance companies must pony up! If MDs do not treat Lyme, then they will be prosecuted!

Kayda

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bettyg
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quite the conversation going on here.

carol, i remember you mentioning this before HERE on the board.

perhaps you could do a search for it since YOU mentioned it using your membership no. to locate it in MEDICAL, text body, and make sure you EDITED MY PROFILE so it goes back to the LONGEST period of time vs. 30 day default.

disgusting beyond words! HOG WASH! [cussing]

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Carol in PA
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quote:
Originally posted by bettyg:

carol, i remember you mentioning this before HERE on the board.
Perhaps you could do a search for it

Betty, I was not able to list a source on my previous post about this.

I googled and found this:

=========

We have all heard the stories of doctors who treated Lyme patients that were told by their peers and / or HMO to cut costs and to not accept Lyme patients.

HMOs have often used team bonus incentives to CURB THE ALTRUISTIC DOCTORS FROM TAKING PATIENTS THAT ARE COSTLY.

For example in a clinic with 200 doctors: If the doctors get rid of the one doctor in the clinic who is "overdiagnosing and overtreating" his Lyme patients then the group bonus would go from say nothing back to $30,000.

What kind of pressure do you think the Lyme treating physician would be under from his 199 peers?

It would take real character for a doctor to admit that he has told thousands of patients, based on inaccurate tests and the denial of contrary evidence, that they aren't sick despite the patient's repeated insistence that they are in fact still sick.

http://www.centuryinter.net/tjs11/bug/blot1.htm

==========

Carol

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Cobweb
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I don't get it-how can an insurance company make out better paying for the gazillion specialists I was sent to, and all their gazillion sophisticated tests I was subject too with the result being no definitive diagnosis resulting in years more of follow up visits to treat symptoms of unknown etiology when one visit to an LLMD put it all together and comes up with a single focus treatment plan that covers all the bases?

Should I enter that in the Guiness World book of Records for run on sentence? In other words- Why is paying for seven different specialists more cost effective than paying one LLMD?

Cobwebby

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Kayda
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Cobweb,

I actually followed your sentence! :-) I've wondered that, too.

It's like they actually would rather treat you for a misdiagnosis of MS, Lupus, fibro, cancer or anything except Lyme.

I think we are getting discriminated against! Where is that disabilities act when you need one!

Kayda

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humanbeing
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It is just too hard. Too hard to figure out the bug, too hard to fight the insurance co, too hard to make us well quickly.

I honestly believe that lyme is too complex for most people to understand. (Look how hard we have to study just to scratch the surface.)

What doc has the TIME to study the bug and all it's variant forms? Especially when it is easier to go with the mainstream viewpoint that we are all nuts.

--------------------
We are spiritual beings on a human journey...

www.ruggierogallery.com

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5dana8
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hi cobwebb

I think specialist appointments may be cheaper for the insurance company's to pay for than treatments.

My 6 months IV easily topped $60,000. Not including the 2 1/2 years of orals. This was with a discount too.

IE: One bottle of mepron costs us $850. Yikes.

It's an expsensive disease to treat long term....so I can see how the insurence company's would rather pay for the run around at specialists.

--------------------
5dana8

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bubbear
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Sad that the X-files went off the air....The Conspiricy theories associated with Plum Island The Goverment, CDC, Insurence companies etc. etc. would make a great story...Oh wait..they only did FICTION...LOL Hell I was crazy LLONG before LYME.

--------------------
Hugz, Tugz and Health to you!
Greg/bubbear
http://centralfloridaresearch.com
Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino

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