From what she told me, this family member has been tested for Lyme several times and her family thought at one point he/she might have Lyme. [You know the story on testing....etc....so pathetic.]

So now he/she has been put on heavy doses of steroids and has been told he/she would have to take them for up to a year.

If this is Lyme, this person could be permanently damaged, or worse.

He/she is now having major problems with irritability and apparently some rages. I'm just so distressed that yet another person is being thrown to the dogs, suffering because of ignorance or whatever on the part of Mayo.

Don't they care at all about people? Someone posted here awhile back that Mayo "doesn't do Lyme." This makes me sad and angry all at the same time!

------------------
oops!
Lymetutu

So sorry this is happening!

They should be booted out of the country for what they are doing.. or NOT doing for folks with tick borne diseases. NO.. they should be booted to the furthest planet away from us.. and then some.

I have worked with soooooooooo many folks with Lyme that they misdiagnosed.. it ain't even funny.

And one VERY interesting note.

NEVER have I EVER seen a person who was tested through them that EVER had a positive test.

Now what's up with that?

I mean even a baboon could develop a test that would accidently get it right SOMETIMES!

Yes.. they are IN with the out to lunch bunch of idiots who believes ONE dose of doxy cures Lyme.. and if the test ain't positive you ain't got it.. and folks who have chronic fatique, muscle or joint pains should NOT be tested or treated for Lyme.

What a bunch of sorry slymes.

If we can help make a difference here.. let us know.

Grrrrrrrrrrrrrrr.....

And by the way.. I am not a doctor.. and this is my opinion.

------------------
If you get the choice to sit it out or dance...

Thanks, Tinny! I'm hoping this person will get back to me on this so I can help.

I have been thinking about that a lot today. I keep thinking about WHY? Why, why, why doesn't doctors, CDC, government acknowledge and treat lyme. I think because we are all live guinea pigs. It would be very difficult to "drop" this disease in another country, e.g. N. Korea or Africa or India or the Middle East and then be able to "study" the long term effects and then "tweak" the bacteria/virus/and anything else you would like to add to this germfare to obtain a super "bug." We are so easily duped about so many things.

You don't think your own country (and that include Canada, and Britain) wouldn't do this to its own citizens? There are many scientists, people in government, people in high places who don't give two hoots about anybody except themselves. To many scientists, all that counts is the "science."

Some day the truth will come out, I only hope I am still alive. I doubt that it ever will.

quote:

---

Originally posted by Corinne E:
I have been thinking about that a lot today. I keep thinking about WHY? Why, why, why doesn't doctors, CDC, government acknowledge and treat lyme.

---

It's not any of these "institutions" that are at fault.

It's the drug companies. Follow the money.

Think about it like this.

If it was generally accepted that in fact infectious diseases is the cause of most other diseases (MS, ALZ, CFS, etc and perhaps even cancer), what would happen to all the drug companies?

Well, they'd go bankrupt right? Infectious diseases are generally curable in a relatively short time.

IOW, there's no need for all those other, often lifelong, drugs they sell for treating symptoms. And that's where they make their money!!!

And from there it simply trickles downwards (through lobbying) to the government, CDC, Mayo and then onto scientists and doctors.

Cause if you're a doctor or scientist and you're not politically correct, you can say bye bye to your carreer and to any grants.

It's that simply, IMHO.

Just look at all the LLMDs. They are essentially shuned by the medical community. They stick their heads out for us. Lucky we certainly are that some doctors have a spine!!!

Michael

My theory...it's the insurance companies who wield their mighty sword! They DON't want to pay for long term treatment.
Furthermore, they enlist doctors who deny the existence of chronic lyme and coinfections to testify on their behalf when challenged in the courts by people who have been denied tx. Some of these docs rack in the $$$$ testifying at upwards of $700 per hour for their so-called
expertise. There is a word to describe these docs...but it's x-rated!

What do you think?

quote:

---

Originally posted by nan:
Michael...Your argument is food for thought.
But...if the drug companies are out for money...you would think they might embrace chronic lyme which requires long term abx.
Wouldn't there be money in that for them?

---

Well, most Lymies don't get treated for life, right. Maybe 2-3years. Sometimes more.

But once you're cured, you're cured.

From this perspective, an infectious disease is a poor revenue generator.

You can't say that about MS, Parkinson, CFS, ALZ, cancer, AIDS, etc and all the little symptoms people develop over the years due to permanently lingering infectious diseases in their bodies.

These diseases offer lifelong reliable revenue to the drug companies.

quote:

---

Originally posted by nan:
My theory...it's the insurance companies who wield their mighty sword! They DON't want to pay for long term treatment.

---

I've heard that so often. And I don't buy it.

The insurance companies don't have much trouble paying out for MS, Parkinsons, ALZ, AIDS, Cancer, etc treatments, as long as it is endorsed by in-the-network MDs.

And that's a heck of a lot more costly than a few years of abx for Lyme, Mycoplasma, Babs, whatever.

Btw, I've had to insurance companies now. Aetna and HealtNet. So far both have been paying out without a single comment. They even covered IgeneX, MDL and SPECT. All tests ordered by out-of-network LLMDs.

quote:

---

Originally posted by nan:
Furthermore, they enlist doctors who deny the existence of chronic lyme and coinfections to testify on their behalf when challenged in the courts by people who have been denied tx. Some of these docs rack in the $$$$ testifying at upwards of $700 per hour for their so-called expertise. There is a word to describe these docs...but it's x-rated!

---

Yes, this is all true. But I think there's more to it than that.

The insurance companies probably evaluate each doctor, or medical group, on an individual basis.

Thus, if an LLMD is considered he'll automatically be rejected because the cost-per-patient is very high for the LLMD.

This is not true for mainstream doctors who have a mix of patients, most of whom are non-costly. Thus, the average cost-per-patient will be low for mainstream MDs.

Suppose there was such a thing as an Parkinsons MD (PMD) who only treated Parkinsons patient. He would also have high cost-per-patient. Thus, he'd probably be rejected too.

So IMHO it's not the Lyme, it's the cost-per-patient that weighs in.

And finally, don't underestimate the power of the drug companies on which medical "topics" get researched.

The drug companies get a huge share of the governmentally distributed medical research grants. And they ain't looking for cures.

Otherwise 501(c)3 institutions such as LDA, National Cancer Foundation, Alzheimers Disease Foundation, etc, wouldn't have to exist. Cause only these institutions support true research into cures.

The long arm of the drug companies also extend into university medical programs and other medical research facilities. Cause these research outfits get their grants from the government, or sometimes even from the drug companies themselves.

Do you think these outfits would even consider proposing a research topic to find a cure for Lyme?

No! It's just politically incorrect.

Suppose you did propose to research Lyme, and you got rejected. The next time around you put your name on a research proposal, no matter what the topic is, your name is already on the black list.

In fact, the research outfit you work for is by association on the black list.

And IMHO, this is why medical researches by default box themselves into this "Lyme is just an excuse and long-term abx is dangerous" box.

It's simply a defense mechanism they have to live by to deal with their conscience in an effective manner.

You could say that many of these world renowned medical researchers, including those at Mayo and Yale, live in denial.

I wouldn't be surprices if these people don't even read the Lyme related articles from group B (i.e., our side). Cause it's better being ignorant and categorically deny the truth, than having to consider, over and over again, the real truth about Lyme.

It's the medical communitys version of the police's "blue code of silence".

OK. I've said enough for a year long debate.

Shoot folks.

"Moreover, the downstream costs of medical care delivered on the basis
of
just one false-positive Lyme test can be as much as $15,000."

Gee, we wouldn't want to cost the insurance company too much money, now would we? Wonder how they figured that? If the person didn't respond to the treatment, then it couldn't cost very much.

For decades, every doctor, researcher, hopital, government health agency.... "knew" that gastric ulcers were caused by stress. (Weak)People who did not handles stress well were succeptible to ulcers. So, people lived on milk, went into psychoanalysis, got half their stomachs removed, and died, to mention only a few outcomes.

Then a young Australian physician proposed that ulcers were CAUSED by bacteria. He was ridiculed, harrassed, and investigated for giving patients antibiotics "inappropritely." The fact that they were cured was irrelevant. He was practicing outside the protocol.

Interetingly, the ducks knew that people with ulcers had the specific bacterium (helicobacter pillori sp?) in their stomachs but "knew" that was because they were more succesptible to bacterial colonization due to having worn out their stomach linings by not handling stress correctly.

That was nearly twenty years ago and he has been amply proven to have been correct. Yet, there are STILL ducks who won't prescribe antibiotic for gastric ulcers to people who really could be CAN be cured in three weeks.

The way we are treated is terrible but it may not be entirely personal.

By the way, Cave, I told my story to a UCSF urologist. Initally, he exclaimed "So it took you twelve years to get diagnosed an treated?" Then he said, "Well, that seems to be how long it usually takes." He was really interested in my protocol and how it has been working. Cool guy.

"Medical care delivered on the basis of one false-positive test . . . as much as $15,000."

You may not like what I am about to say. I am NOT defending Mayo's terrible lack of customer no service when lyme is invovled. I think that part IS terribly wrong and against the hypo.(cant spell it) oath.

The thing I did want to say is for some things, they are absolutely tops and so well respected. When I first came here and started reading of their lyme treatment I thought somebody at random had a bad experience. But now I have accepted as fact they are that way. If one of my kids or grandkids had something they were really good at I would not hesitate to take them their.

I remeber when I was young, my mother had a severe thyroid problem. cant remember what exactly. But she did go there and they did fix her up pronto. I always thought it was quite serious and life threatening at the time. Remeber how young I was at the time so everything was a bigger deal and they didnt do all the things non chalant like they do now. Travel was even a real trip there then compared to now. I could almost do that trip now in my sleep but back then it was all two lane of winding roads and stop lights and signs. (yes they did invent the stop light previous to this, My kids think I am older than dirt and the wheel wasnt invented then)

It is a shame considering most people who go to Mayo have some disease that has not been able to be diagnosed anywhere else.

These people go to Mayo as their last resort in hopes of finding knowledge that no other Dr. has. It is suppose to a venue where all of your answer will be found.

I even stayed with some friends while there in MN. My friend's husband works at Mayo and they still can't find out what was wrong with her.

She had been going to them for 15 years. She believes they are gods. She has deteriorated so badly she can't even shower or get dressed on her own anymore.

I really think she has Lyme. She had a bulls eye rash she said right before she started getting sick.

Anyway she asked them to test her and they said it couldn't be Lyme. She has seizures, encephalitis, degenerative arthritis, on and on.

So you can imagine how much faith I had in Mayo once I leaarned all this about my hosts.

I have a friend who brought his father there because he was sick. Mayo said he was depressed and sent him home. His father went into a coma with brain cancer shortly after. THey could have at least done a brain scan.

I have no respect for Mayo..

Some of these places get so big they forget why they became dr's to begin with..

daniella

Think of how many thousands of people with Lyme have gone there very ill and returned home as ill [or worse, if they gave them steroids] as when they left. It really is shameful.

This is taken directly from the Mayo homepage:

Mayo Clinic is a charitable, not-for-profit organization.

Its mission is to provide the best care to every patient every day through integrated clinical practice, education and research.

It is governed by a 31-member Board of Trustees composed of public members and Mayo physicians and administrators.

So apparantly, they do research, education and focus more on treating more difficult diseases (Lyme not included apparantly.)

Here's where they get their research funds from:

In 2003 they had a total research budget of $351M of which $166M came from the government (mainly NIH). $29M came from commercial sources and and $23M from other external sources. $133M came from Mayo "funds".

Why are you so shocked that they belong to Camp A?

Because they do research and education?

Michael

I told her, "You aren't going to believe what my doctor thinks--he thinks I have Lyme disease."

My friend said, "My best friend had LD."

"Really!" I said, "Would you give me her phone number so I can call her? I'd like to find out who her doctor is and what kind of medicine she is taking."

"I would," my friend said, "but she died last week."

"I am so sorry," I siad "did she have a car wreck?"

"No, " my friend said, "She was being treated at the Mayo clinic and she died of Lymes disease."

I will have to ask my friend who diagnosed her--weather Mayo diagnosed or they found out through an autopsy.

I think a lot of people have made excellent points - about following the money trail which includes both drug companies and insurance companies.

What I'd like to propose ... and please don't try to take away my American flag, my apple pie, or my Chevy...but what hasn't seemed to be addressed in this thread is the US government's role in Lyme disease education...or shall I say, "lack" of a role.

The CDC (a governmental agency) admits at its own website that a Lyme diagnosis should be a CLINICAL diagnosis.

That being true, why are they not doing more to educate the citizens, the docs, the insurance companies, and the drug companies?

I know we're busy sending a lot of money overseas (and please note I'm resisting addditional political commentary here and am REALLY trying to stay focused...)

BUT it seems that IF IGeneX's big whig: Dr. Nick Harris is correct when he asserts that Lyme Disease is America's 2nd leading epidemic - that MORE info should be dissemenated all the way around...and MORE @#$% money for research!!!

My opinion - is that our government doesn't want to admit we have another epidemic on our hands - especially not one that can be "caught" so easily & innocently. Not an epidemic that may cause some citizens to panic and become hysterical at every insect bite...ESPECIALLY since there is no definitive cure for Lyme.

I'm not trying to sound like some conspiracy theorists or anything. I think Lee Harvey Oswald killed JFK, and I think Elvis, is indeed, dead - may they both rest in peace.

I love America - I just don't trust we're always given ALL of the TRUTH - ALL of the time by our elected officials or the bureaucracies they oversee. (I'm quite sure I spelled 'bureaucracies' incorrectly - but as a "lymie" - I reserve the right to do so.)

I just wish that we could some how collectively harness all the energy we produce when we do throw our sporadic Lyme "rages" and channel it to spread the word about Lyme - to help fund research - and to collectively envision a cure.

OK. I'm done for now.

DR Wiseass is now stepping down off soap-box.

Frankly, this site (including me) is comprised of many of the "worst cases scenarios" of the diagnosis and treatment of Lyme. Personally, I was told by a Mayo physician that I couldn't have Lyme because "it was the wrong time of year" However to say that all their tests come back positive is absolutely wrong and irresponsible.

Also to generically label the thousands of doctors and medical staff at Mayo as insensitive, uncaring, and ignorant is unfair and well, insensitive, uncaring, and ignorant.

[This message has been edited by SteveInMinnesota (edited 21 February 2005).]

She posted a notice that we should stop contacting her and that her daughter had been tested for lyme...AND...she was taking her to the Mayo Clinic!

I'd like to think she's reading this right now. She was greatly offended at my remark that the doctors she had taken her daughter to must all live under rocks.

I feel like we are all in a similar situation, e.g. what the government and medical association did first with syphilis, just left people to die. Only this time it will be on a much grander scale. If the cdc and government have a choice between people and money, guess what wins out every time. And this is not a rant against GWB, all governments do it.

I do love your sense of humour.

quote:

---

Originally posted by cmichaelo:
Yes, this is all true. But I think there's more to it than that.

The insurance companies probably evaluate each doctor, or medical group, on an individual basis.

Thus, if an LLMD is considered he'll automatically be rejected because the cost-per-patient is very high for the LLMD.

This is not true for mainstream doctors who have a mix of patients, most of whom are non-costly. Thus, the average cost-per-patient will be low for mainstream MDs.

Suppose there was such a thing as an Parkinsons MD (PMD) who only treated Parkinsons patient. He would also have high cost-per-patient. Thus, he'd probably be rejected too.

So IMHO it's not the Lyme, it's the cost-per-patient that weighs in.

And finally, don't underestimate the power of the drug companies on which medical "topics" get researched.

The drug companies get a huge share of the governmentally distributed medical research grants. And they ain't looking for cures.

Otherwise 501(c)3 institutions such as LDA, National Cancer Foundation, Alzheimers Disease Foundation, etc, wouldn't have to exist. Cause only these institutions support true research into cures.

The long arm of the drug companies also extend into university medical programs and other medical research facilities. Cause these research outfits get their grants from the government, or sometimes even from the drug companies themselves.

Do you think these outfits would even consider proposing a research topic to find a cure for Lyme?

No! It's just politically incorrect.

Suppose you did propose to research Lyme, and you got rejected. The next time around you put your name on a research proposal, no matter what the topic is, your name is already on the black list.

In fact, the research outfit you work for is by association on the black list.

And IMHO, this is why medical researches by default box themselves into this "Lyme is just an excuse and long-term abx is dangerous" box.

It's simply a defense mechanism they have to live by to deal with their conscience in an effective manner.

You could say that many of these world renowned medical researchers, including those at Mayo and Yale, live in denial.

I wouldn't be surprices if these people don't even read the Lyme related articles from group B (i.e., our side). Cause it's better being ignorant and categorically deny the truth, than having to consider, over and over again, the real truth about Lyme.

It's the medical communitys version of the police's "blue code of silence".

OK. I've said enough for a year long debate.

Shoot folks.

Michael

---

Unfortunately Mayo is a mainstream medical institution that rarely, if ever, ventures very far off the beaten path. That's why I travel 60 miles to see a doctor when there are 100s of them within 60 feet.

Just Don, the short answer to your question is "no". I would not risk my job here as second assistant bed pan washer in order to raise this issue with the Clinic.

I have some general philosophical problems defending the Camp B position with anyone.

(Sorry for this long rant, but I need to give an example).

Let's say I majored in Math in college, then went to 4 years of graduate school, then a residency in it and then had a job doing differential equations for a living. Then let's say someone comes up to me with little or no math training and says "Sorry, much about what you believe about arithmatic is wrong because it doesn't work for me or some other people I know." Right or wrong, it's a tough sell.

That's basically how it is at Mayo Clinic. Until someone with some serious medical credibility steps up and introduces some documented study showing that Camp B is right, it will never happen here.

So little about medicine seems to be black and white. No one seems to be positive about anything. I think we each just grab our version of reality and go with it.

Lyme Disease : A Plea To Doctors
by Marjorie Tietjen
[email protected]
June 17, 2004

Lyme Disease is the fastest spreading vector borne disease in the country. The question must then be asked as to why this most serious degenerative neurological disease is essentially being downplayed, ignored and fraudulently misrepresented?

Doctors across the country are dismissing and turning away thousands of seriously ill patients. Many doctors even refuse to consider the possibility that those previously diagnosed with such diseases as ALS, M.S, Chronic Fatigue Syndrome, BiPolar Depression, Fibromyalgia, Alzheimer's, etc, may actually be infected with Borrelia Burgdorferi ( Bb... the causative agent of lyme disease ) and other coinfections. This microbe may be the main cause of various autoimmune diseases and other vague conditions or in some cases it may be a co-factor. Certain labs which look for the L form of Bb are finding this pathogen present in much of the chronic illness population.

Respected researchers , such as Lida Mattman ( author of "Stealth Pathogens" ), are finding it more and more difficult to find blood free of Bb for control purposes. Bb has not only been found in ticks but also in human tears, breast milk, semen, mosquitoes, cow's milk, fleas, mites....even well water and african dust. This attests to the extreme hardiness of the lyme spirochete.

Almost every patient we come into contact with is reporting that doctors are reacting very strangely when presented with the idea that the patient may be ill with Chronic Lyme Disease. Doctors are taught that there really isn't such an entity as Chronic Lyme Disease ( meaning chronic active infection ). This is a blatantly false teaching and I will list a couple of links later in this article which will prove that Lyme can be a persistant infection. The theory that Yale University puts forth to the medical community....and it is only a theory without proof to back it up....states that after three to four weeks of antibiotics a person is automatically cured. They contend that if on the 31st day , the day after treatment is stopped, then the patient no longer has an active infection but that it has suddenly turned into a disease of an autoimmune nature. This theory is absurd.. Testing is so unreliable that there is no way to p rove the lyme spirochete has been totally eradicated. If the same symptoms persist...so should the treatment.

The mere mention of this disease to most doctors seems to trigger anger, fear, sarcasm, condescending attitudes, denial and often even explosive behavior. Patients often leave the doctor's office in tears, feeling they have been emotionally attacked. This of course only compounds the stress of this legitmate illness and often weakens the patient further. Many doctors tell the patient they are depressed and that they need antidepressants which will solve all their problems. Many of us are beginning to think that it's the doctors who need something to calm them down. I'm really not trying to be sarcastic and I don't want to come across as if I'm attacking the doctors. We realize they are also victims of the system. It must be very frustrating for doctors to be taught one thing and then have patients come in demanding something totally opposite to what the doctors have been told is Truth.

Are doctors frightened of something that the public is not aware of or is this abnormal behavior and resulting non treatment due to ignorance? Is there an intentional lack of education concerning this issue? It certainly seems so and I will tell you why it seems so.

Most testing for Lyme Disease is very inaccurate and therefore can not be used reliably in the diagnosis or "ruling out" of Lyme Disease. The Centers For Disease Control states that their very restrictive diagnostic criteria should only be used for surveillance purposes and not for diagnosis. However, my chief complaint is that no one is encouraged not to use this criteria. There is no promotion whatsoever of this stance of the CDC. As a result, a very large percentage of the population is left undiagnosed, misdiagnosed and untreated.

The Centers For Disease Control also states that Lyme Disease is a clinical diagnosis. This means that doctors should use their own judgement after considering the patient's symptoms and history. Laboratory testing should only be used as an adjunct.

Doctors need to educate themselves as to the extensive list of symptoms which are associated with Lyme Disease and it's coinfections. Once familiar with the general symptom complex it is very simple, even for lay people, to predict and conclude who is probably stricken with Lyme Disease. Reports from young doctors confirm the suspicion that not much is taught concerning Lyme Disease, in medical school. It's an unfortunate situation that doctors and patients alike have to seek their information from sources other than the mainstream. Patients are in the midst of this unprecedented controversy and are realizing that perhaps this lack of education is intentional. The studies and doctor's personal experiences are out there, which show unrefutably that Lyme Disease can be a chronic active relapsing infection. The medical authorities refuse to acknowledge this and continue to thwart proper diagnosis and treatment by refusing to educate doctors as to the facts concerning this disease.

The Lyme Disease pandemic is such an extreme problem in Connecticut that a special Hearing was held in February of 2004. The purpose of this Hearing was to bring to light the fact that Lyme Disease can be chronic and that Lyme Disease can and does sometimes remain an active an relapsing infection. The microbe which causes Lyme Disease is pleomorphic ( changes form) and as a result is very adept at evading detection. There may, at times, be autoimmune factors present but this does not exclude the fact that an active infection can be present along with autoimmune markers.

The Centers For Disease Control had to be sternly persuaded to attend the Connecticut Hearing. Attorney General Blumenthal strongly advised the CDC to send out special warnings or notices to doctors, labs and health departments, for the purpose of promoting and encouraging the enforcement of their statement that the CDC criteria should not be used for diagnosis. I recently contacted the CDC to ask what progress had been made in this area. I was referred to an article in a magazine put out by the CDC which supposedly states very clearly that doctors should not use the CDC criteria for diagnosing lyme using the Western Blot. According to them , this is their big effort to educate. The CDC official agreed to send me the link to this article...however I never recieved it. I then e-mailed the CDC ,for more specifics, and have yet to recieve a reply.

The extent of misdiagnosis and morbidity concerning Lyme Disease is staggering. Despite the undistributed statement regarding their diagnostic criteria, most doctors and labs are basing their conclusions on these very restrictive guidelines or parameters. In addition testing for antibodies in tertiary late stage Lyme Disease is almost futile due to many factors which interfere with the antibody response. A more reliable test...such as the Bowen Test, isolates the actual L form of the Lyme microbe.

Why isn't there an extensive campaign on the part of the CDC to educate in this most crucial matter? It makes no sense that this agency is not doing so. This can lead one to the conclusion that perhaps the use of such restrictive testing criteria, keeps the extent of this pandemic under wraps, to the benefit of pharmaceutical companies and other corporations.

In the past we have held medical conferences for doctors, lab technicians and nurses, in the local hospitals. Invitations to all doctors were given to the hospitals to pass out to their physicians. In all cases doctors were conspicuously absent. Our speakers were very well known and respected doctors who specialize in Lyme Disease. They offered very valuable information to the lab technicians, nurses and patients who did attend. Evidently the medical doctors were just not interested, they were pressured into not attending or they were never given the invitations.

Doctors, many times, express the idea that they don't have enough time or energy to investigate into the many diseases currently afflicting our world. This is certainly understandable but perhaps the root cause of many diseases involves only several microbes which present themselves differently in each individual. This appears to be the case with Lyme Disease...the second "Great Imitator" next to syphilis....another spirochetal disease.

It is our hope that more of those in the medical profession will take it upon themselves to investigate both sides of this issue. It is vitally important to keep the mind open to the experiences, research and protocols of those lyme literate doctors who are working in the trenches with the realities of Lyme disease. Experience is always the best educator. And most important of all....good doctors always really listen to and believe in their patients. Effective physicians tell how they have learned more from their patients than from anywhere else. After all, the patients are the ones experiencing the disease first hand. It is interesting to note that many lyme literate doctors have experienced Lyme Disease themselves and therefore understand the enormity and complexities of the disease. Most of us are not "just depressed" nor are we hypochondriacs. Lyme Disease can affect every body system and as a result the number of symptoms which can be experienced, is overwhelming. The fact that many patients are glibly told their symptoms are due to depression, is doing them a great injustice. Lyme Disease can cause depression, anxiety and many many other neurological manifestations....but the point is...these patients need antibiotics....just as syphilis patients need antibiotics...to eradicate the source of their problems. Antidepressants just cover up the symptoms which allows the infection to simmer and progress below the surface.

I blame the medical system which appears to be educating doctors towards their own selfish purposes. The insurance companies and pharmaceutical companies play a very large role in the medical system and in the education of doctors. We all know that corporations don't have a conscience and don't care about the individual. They care about profits and that's what motivates them. We know that drug companies profit greatly by promoting many symptomatic treatments for one disease rather than a single curative treatment. Doctors are also divided up into so many subspecialties that it makes it very difficult for one doctor to ever see the patient as a whole person and to be able to discern the connectedness of the many symptoms which present in Lyme Disease.

For example.....a single patient may be separately diagnosed with carpal tunnel syndrome, fibromyalgia, heart palpitations, irritable bowel, seizure disorder, TMJ, foot pain, conjunctivitis, acid reflux....and also be separately treated for each and every condition, with either surgery or symptomatic treatments. This approach is extremely inefficient, costly and very dangerous. Many times the basic underlying cause of all these symptoms or so called diseases, is found to be due to one organism such as babesia, borrelia burgdorferi, different strains of mycoplasma or even a combination of these microbes. Why isn't testing for these organisms routine when someone presents with a chronic illness....especially when the patient is from an endemic area?

Are as guilty as those doing the nasty deeds.

Each one, reach one.

------------------
If you get the choice to sit it out or dance...

I had not been able to work and was able to fill part of my day, and at the same time tried to get some answers to my failing health by working at Mayo part-time in three different volunteer positions.

When I came down with Meningitis (due to undiagnosed lyme disease) I saw every specialist at the Mayo Clinic Hospital. I thought the infectious disease dept. was all over my case. They released me with a big fat bottle of methadone for pain and a standing appointment with a psychiatrist (because as you may be familiar, Lyme patients are a bit "unstable").

Some of us may be labeled more unstable because after a very extensive and ``thorough'' clinically review by their specialists, a less-than-concerned receptionist canceled a special lab test because they overbooked that day; they did not call to give me notice of the cancellation, after I had traveled over an hour to the test, had fasted all evening to the next afternoon for this test; and had my husband change his work schedule to accommodate watching the children while I went for the test.

When I was overwhelmed enough by this kind of lack of consideration, combined with the level of condescending tone, I was able to speak up to this top specialist. I obviously spoke to him in a way that he had never been spoken to before because, he grabbed me by the elbow and dragged me into his office to try to scold me and my case and medical care were dropped that same day.

Then to add insult to injury, after double billing me for multiple tests, I was able to get reimbursement from my insurance company, who sent the check to the Mayo Clinic by mistake and I still haven't received this reimbursement -- they pretend not to receive my phone calls anymore.

I lost respect for the doctor, the institution and the philosophy that they have eloquently painted across the walls of the building.

I know that there are lots of very caring doctors and nurses, etc. at this institution, however, I have been left out in the cold by them on many occasions and I was considered one of them because of my volunteer work for over a year.

There's no doubt that they have helped many ill people - but this is what we should be clear about- they are staying away from Lyme patients. The top endocrinologist couldn't even begin to imagine why I felt so sick, but he clearly gave me a good bill of health and sent me on my way with another grab bag of hormonal supplements. Clearly, we were not getting to the root of the problem, but we were medicating it enough so that it wouldn't be noticed until the next big medical crisis comes along.

We are lost souls to Mayo and their fraternal friends at other teaching hospitals and universities because they are holding hands with the CDC and NIH. Until the CDC and NIH stand up and grow up - progress will be VERY SLOW for us.

Nan, thanks for pointing out the insight of Marjorie Tietjen's perspective.

quote:

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Originally posted by SteveInMinnesota:
> Those who stand silently on the sidelines
> and watch as people are hurt... yet do
> nothing to help the situation..
> Are as guilty as those doing the nasty
> deeds.

If that was a cheap shot at me Tincup, you are WAY out of line. You have absolutely no idea of my situation or actions and to stick a pretentious holier-than-thou comment like that in here is uncalled for.

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There are three reasons why I wouldn't stand up for camp B here at Mayo. In increasing significance:

1. It would cost me my job, and my ability to support my family and to afford the treatment I need to get better.

2. It would do absolutely no good. From an insiders perspective, they only listen to medical journals and government agencies. Patients don't know anything.

3. Personally, I don't know if anyone knows the "truth". I only believe about 1/2 of what I read here which is pretty close to what I believe from the other side of the river.

quote:

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Originally posted by SteveInMinnesota:
Because 'Just Don' had just asked me if I would be willing to make an issue of Lyme Disease here at Mayo Clinic and with my personal Dr friends. My response was that I would not be willing to risk my job to do so. Almost immediately after that you posted your comment saying that those that stand on the sideline are just as guilty. Seemed pretty direct to me.

There are three reasons why I wouldn't stand up for camp B here at Mayo. In increasing significance:

1. It would cost me my job, and my ability to support my family and to afford the treatment I need to get better.

2. It would do absolutely no good. From an insiders perspective, they only listen to medical journals and government agencies. Patients don't know anything.

3. Personally, I don't know if anyone knows the "truth". I only believe about 1/2 of what I read here which is pretty close to what I believe from the other side of the river.

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I'd like to have a link directly to that. It's AWESOME!

quote:

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Originally posted by Lymetoo:
nan......would you please re-post that article in Medical and put the name of the article in your subject line?

I'd like to have a link directly to that. It's AWESOME!

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THis thread about Mayo makes me want to vomit.

Just so happens that while you guys were having this discussion in February, I was actually at Mayo for 2 wks with encephalitis caused by LYME!!! Of course, it was misdiagnosed by MAYO. If it weren't for my persistence and ability to see a LLMD, I might have died!!

I know someone who works there and I wish I could send her this thread. I called my neurologist there back after I was diagnosed with Lyme and he had the balls to say to me, " I didn't see you for possible Lyme disease. I only saw you for unusual headaches and seizures. Well, at least you'll be better now."

PUKE, PUKE, PUKE!!!

quote:

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Originally posted by bigmamma:
Thanks, Lymetoo, for posting this link.

THis thread about Mayo makes me want to vomit.

Just so happens that while you guys were having this discussion in February, I was actually at Mayo for 2 wks with encephalitis caused by LYME!!! Of course, it was misdiagnosed by MAYO. If it weren't for my persistence and ability to see a LLMD, I might have died!!

I know someone who works there and I wish I could send her this thread. I called my neurologist there back after I was diagnosed with Lyme and he had the balls to say to me, " I didn't see you for possible Lyme disease. I only saw you for unusual headaches and seizures. Well, at least you'll be better now."

PUKE, PUKE, PUKE!!!

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And if you consider that Mayo is getting a heck of a lot of money from NIH, NIH pretty much calls the shots on diseases like Lyme. Until they get it right or cease to have the financial clout they have now, this will not change.

Another factor, I think, is that Mayo may be self insured, like Johns Hopkins. In other words, malpractice lawsuit judgements would be paid by the institution itself, not some third party insurer. So, if they change their tune on Lyme, look at the potential financial consequences!

quote:

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Originally posted by lou:
I think Steve hit the nail on the head when he said Mayo listens to medical journals and the gov't health agencies, that patients don't know anything.

And if you consider that Mayo is getting a heck of a lot of money from NIH, NIH pretty much calls the shots on diseases like Lyme. Until they get it right or cease to have the financial clout they have now, this will not change.

Another factor, I think, is that Mayo may be self insured, like Johns Hopkins. In other words, malpractice lawsuit judgements would be paid by the institution itself, not some third party insurer. So, if they change their tune on Lyme, look at the potential financial consequences!

It is interested to compare their view on patients with that of Dr. Osler, famous doc at Johns Hopkins back in the early days. He said if you listen to patients carefully, they will tell you the diagnosis. Not in so many words, of course, but in the symptoms they describe. Some of us have actually told the doc the diagnosis in so many words and been ignored too.

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I'm sorry, but I don't give a rats a#$ about how much money they have, where their $ comes from, or their marble bathroom stalls. The medical journals have been discussing the neurological symptoms of Lyme for years. I am disgusted that patients are sent there with classic symptoms for lyme and are NOT diagnosed. I am not talking about the controversy over treatment protocols, but simply the lack of diagnosis. There is absolutely no excuse for this! Even the CDC says it is a clinical diagnosis. Mayo docs, IMHO, are just missing it, which unfortunately leads to unnecessary progression of the disease and further misery. Ignoring the science is doing a great disservice to many.

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Posted by imanurse April 18, 2005:
My advice to physicians is, "Listen to the patient long enough and they will tell you the diagnosis."

Any time a patient is describing fatigue, neuro related symptoms, pain, or using the word "weird or bizarre", THINK Lyme!! In my experience, nurses and doctors are not doing thoroug enough neuro examinations and are missing a lot.

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