This is topic Avoiding Quacks, Snake Oil and Miracle Cures in forum Medical Questions at LymeNet Flash.


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Posted by hcconn22 (Member # 5263) on :
 
Quacks are people who sell false cures, and they are getting more sophisticated, but here are some sure-fire ways to spot one.

I am on my Soap Box because it infuriates me to see these people-- looking to profit off poor, sick and HOPEFUL Lyme patients.

Now don't get me wrong-- I like, use, and support many alternative therapies, including prayer and positive thinking.

I recently was shown a video promotion for a service code named IRT or Immune Response Training. The promoter in the video (a self proclaimed businessman and entrepreneur) told the audience he can treat all kinds of illness including cancer, MS, Parkinson's, Fibro, car accidents, Lyme Disease etc.--

HOWEVER they really like Lyme disease patients because Lyme patients have HOPE. And when you have HOPE you're willing to try new things.

"TRANSLATED IN SNAKE OIL SCRIPT MEANS--- Lyme disease patients are DESPERATE and are willing to try anything or spend any amount of money-- to get better. And if it does not work they don't complain, or go to authorities, they just go back to being sick or trying the next miracle cure.

This modality in particular really raised 50 red flags for me---One of the top of the least list was how IRT worked-
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By calling a phone number or listening to a cd play to recorded"Tones/or Beeps" programmed just for you--- your immune system can be retrained to BEHAVE and help improve immune function--- *(thus helping your body's own defences) to cure lyme disease, MS or a host of other conditions.

He said people are not bad, but they could had a bad or mis-behaving immune system, --- and it needs training, so it can behave properly.
_________________________________________________
I found these statements outrageous and offensive.

How sick, desperate, or neuro Lyme would you have to be to believe this.......beep tones from the telephone can train your immune system, administered by from people with -0- medical, psychological, or scientific training, yet loaded with marketing know how. In fact the program it's brought to you by a MLM sales master..... who also wins free cars by selling soaps, juices and creams.

This kinds of stuff makes me about as sick to see as a stage IV herx. And Im willing to stand up and say so.

I don't like to people being taken advantage of-- with Lyme or anything else for that matter. But to target sick Lyme patients stups to a low that get's pretty close to the hot man if you know what I mean.

Anyway I hope to see IRT and it's promoters get taken to task by a higher authority.

Snake Oil
How it all started
Joseph Myers from Pugnacity, Nebraska, USA was an enterprising man. One day in the late 1880s, he was helping some native American Indians to harvest their medicine plant. They told him that they made a tonic from the plant to treat bee stings, rattlesnake bites and mad-dog bites, infected wounds and fevers. . . in fact just about any malady.

Myers started making his own tonic from the plant and added liberal measures of white man's whisky. Then he hit the trails, traveling the American West selling it as a miracle cure-for-all. He became known as the'snake oil salesman'. Since then, the term 'snake oil' has become a catch-word for a bogus treatment.

These days Myers is long since dead and the recipe for his snake oil has been lost. No one seems to have patented the title for use in a promotional campaign for a health product (surprise, surprise).

But his spirit lives on - even here in the USA in the 21st Century has its fair share of snake oil salesmen. They surface in obscure magazine or newspaper ads, late-night television shows and, increasingly, the internet, selling bogus cures to vulnerable people. The internet in particular has been a favorite of these people as they can hide behind their wild claims on a computer screen-- in fact many have a few or hundreds of web sites to hock there wares.

What do they sell?
There are quack cures for just about everything. They can take the form of drugs (pills or skin lotions), nutritional supplements, or (often bizarre) physical devices. This is not to say that all 'alternative' products are bogus, or that all conventional medicine is strongly backed by scientific evidence.
_________________________________________________
In the case of quackery, the actual product isn't as important as the message. What these promoters are selling is hope, and often an illusion or feeling of wellbeing.
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The promoter tends to be charismatic and positive, projecting an aura of confidence and health. These promoters survive and thrive because of people's ignorance of, or disillusionment with, medical science.

They're also aided by the fact that many conditions are self-limiting and improve with time anyway. So a person can take their treatment, get better and believe it's because of that treatment and then spread a positive message about it. They also benefit from the so-called placebo effect - when we take a remedy
that we expect is going to work it sometimes does. This can be because of the positive expectations we have for the remedy.

These products are often given good media coverage in infotainment programs on radio and television (and by editors and publishers of magazines and newspapers), who are looking for an entertaining story, regardless of whether there's any truth to the promoter's claims.

These days though, the fastest growing sales medium is the internet, and snake oil sales are on the increase on the internet Including discussion boards and many others. You will spot the posts by the same person making these incredible claims for a cure--- yet for some reason they continue to promote and defend their brand of snake oil--- as the miracle cure- with no real facts behind them. Don't doubt them or they will personally attack you- or your credibility.

There is a funny thing about successful medical and halth products... They work and people buy them and use them without hype and fancy buzzwords.

Who buys it?

Snake oil salesmen tend to target the same groups of vulnerable people:

* Those with an incurable condition (especially cancer and AIDS) who are often desperate for a cure and willing to try just about anything.

* Those who are suffering from a degenerative disease for which conventional medical treatment only gives partial relief - arthritis for instance.

* Health conscious people who are worried that they may fall ill from some environmental or nutritional toxin, so they're willing to try 'natural supplements' or body 'purifiers'

* People who are depressed, tired, or anxious, and willing to try something that promises to pep them up or give them energy

* People who are insecure about their body image and who feel they have nothing to lose by trying hair restoratives, erection treatments, wrinkle removers or male enlargers.

AND OF COURSE LYME DISEASE PATIENTS WHO COULD FIT INTO ALL OF THESE GROUPS


The promoters can't rely on the medical establishment to prescribe or recommend their products, so they market via mail order, a toll free number, or the internet - invariably using one or more of the following advertising techniques.

Testimonials
The promoters of these products don't have the endorsement of recognized medical institutions so
they rely on testimonials from 'ordinary people' who are often fictitious. The promoters think that because it comes from the mouth of another person, you'll think it must be true.

The language sounds scientific but isn't really
They use quasi-science to try and impress you, promising to 'detoxify' your body, 'balance' its chemistry, release its 'nerve energy', 'bring it in harmony with nature', or to correct supposed 'weaknesses' of various organs.

These terms don't mean anything, but they sound as if there is some sort of scientific process going on. (There isn't.)

They accuse conventional medical authorities of trying to suppress them Because the scientific community regards them as hucksters, they have to invent reasons to allay any suspicion you might have that the scientific community is 100 per cent right.

So they invent conspiracy theories. The promoters might claim that universities and pharmaceutical companies are trying to suppress the treatment out of professional jealousy or for fear of losing profits, for example.

And im not talking about LLMD's here. LLMD's contrary to popular myth do not make a lot of money compared to their peers. In fact if you are a physician there are 100 simple ways to make a lot more money--- with a lot less hassle and stress than being a LLMD. Also they do not sell.

It cures everything
Just like Myers' snake oil, the remedy/product is effective against a wide range of ailments (which are often unrelated to each other). So: it cures arthritis, stomach ulcers, depression and
hardening of the arteries; it tones up the muscles; it brings out toxins; it adds a oriental flavor to a stir fry ...etc, etc.

Isn't it illegal?
In the US and some states, there are laws in place to protect consumers from dodgy goods and services and these include health products. Under the FAIR Trade Practices Act, it's illegal for a business to make false and misleading statements about products and services, or to sell goods that don't fulfill the promises made about them.

i.e. Airbrone said it helps prevent the common cold-- They were sued and just paid a $25M fine

Every year the Consumer Protection Agency, which enforces these laws, investigates and prosecutes promoters of schemes. For instance, over the past two years, the agency has investigated and prosecuted clinics that advertise hair removal treatments, cures for impotence, creams that claim to reduce cellulite, and bogus treatments
for chronic fatigue syndrome.

You can also complain to your State Attorney General's Offices of Fair (which have similar consumer protection powers) and the Health Commissions in your state. Often though, these investigations come too late for the hundreds or thousands of people who've already bought the products and been duped.

So don't wait to be caught out by these shady operators, it's up to you, the consumer, to spot them.

Don't buy any health product or service unless you think there is sound scientific evidence, or personal references from people you trust that the claims of the promoters are genuine, or unless you're prepared to take the risk that you're wasting your money.

What should I do?

Rule of thumb - if it sounds too good to be true, it probably is.

If you're not sure about a particular health product or service:

Talk to your LLMD or another health professional about it

Use tips on how to evaluate information from our story

Ask your real friends and family

Contact your state's Office of Consumer Protection to see if the promoter has been investigated (you'll be doing others a favor by alerting the Agency to the existence of these promoters), or report a suspicious internet based promotion.

Let's not let the Snake Oil salesmen of the 2000's make their prey off of sick people with Lyme Disease.

Be smart and ask around-- and when a great cure or real relief is found for Lyme disease we will not find in on an obscure web site, a self promoting post on a Lyme board, a MLM sales program or an infomercial.

Be well.
 
Posted by luvs2ride (Member # 8090) on :
 
hc

Your point is well taken and correct. We must exercize "buyer-beware" in everything we consider.

I am very open to alternative methods of healing, and I study each with great interest. But I actually follow very few. I work only with medical doctors who have advanced their training into CAM medicine. These doctors are willing to utilize both allopathic and more natural medicines as I need AND MOST IMPORTANTLY as my body can tolerate and accept.

Even though I look into everything I find, I run it by my doctor as part of my investigation. If my doctor pooh-poohs it, out it goes. If my doctor has never heard of it, I sit back and start watching for results from others. I talk about it to people to learn what they may know. I watch chat forums such as this one to see if many people get positive results. Of course, if my doctor approves it, I add it to my arsenal to see if it will help me.

IRS training is one of those things I sat back and watched others try to see if they got positive results. So far, I am not seeing much positive result chat. At least, nothing better than....I think it may have helped. I'll hold my dollars on that one.

However, something else I watched for 2 yrs was EFT (emotional freedom technique) www.emofree.com

This sounds on the same line as IRS except it is using accupressure points and has been scientifically studied. I watched this off and on for 2 yrs. I downloaded the free instruction guide and practiced on my own. I did notice better sleep and sinus drainage. Then I forgot about it for a long while.

A fear of my disease returning began to plague me. It grew to the point it was disruptive to me. I started looking at EFT again and looked for certified practitioners. I wanted a pro to help me and I felt my fear had become detrimental enough to warrant spending some dollars on it.

I found a lady within 1 hr from my home but she charged less to do a telephone consult. It only took 2 1hr long sessions to completely clear my fear of my disease. I didn't even have to leave my home. That was in Oct 08 and it has never returned. I spent 100.00.

So, yes we must be cautious but not blind to alternative possibilities.

Luvs
 
Posted by oxygenbabe (Member # 5831) on :
 
That guy (IRT) has a very checkered past if you do web research. I looked into it at one time. I did confront him.
 
Posted by massman (Member # 18116) on :
 
EFT is a great tool.

What is IRS ?
 
Posted by shazdancer (Member # 1436) on :
 
Internal Revenue Service.

Sorry, couldn't resist. [Big Grin]

I think she meant to say IRT, massman.

Hcconn, great post. Luvs, as always, well said. Use your brain, check with your healthcare professional, and look for results better than, "I think it maybe helped a little bit."
 
Posted by JKMMC09 (Member # 15795) on :
 
Thanks for the head's up, HConn..Seems this IRT stuff is pretty shady...


http://lymeblog.com/modules.php?name=News&file=article&sid=1156
 
Posted by nomoremuscles (Member # 9560) on :
 
I tried these tones but all they did was make my dog salivate. Maybe I did it wrong.
 
Posted by lpkayak (Member # 5230) on :
 
good post.

i agree.

i was desperate and sick enough (neuro) to buy stuff-1,000.'s worth at one time and the whole thing really bugs me

so does some of the snake oil sellers they have at conferences

and some of the poster son here

I DO use alternative stuff and have from the beginning-it is not all the same

my biggest worry is for newbies who are very sick and confused and being preyed on
 
Posted by She R Lock (Member # 18823) on :
 
Hi,
This is my first post so not sure if I'm doing this right... Excellent info!! Thank you for posting!!
SHE R LOCK
 
Posted by MustBeaPony (Member # 11179) on :
 
Good information and excellent presentation.

Just so the current Myer's cocktail isn't confused with snake oil, here is a site for the present day concoction and uses.

Intravenous Nutrient Therapy: the "Myers' Cocktail"

I have difficulty with absorption and find this is helpful.

Hope & Health!
Robin
 
Posted by SoSublyme (Member # 15185) on :
 
hcconn,

Thanks for this very informational post. I was searching out lyme websites recently and came across "TheLymeLight". The guy that set it up just screamed "snake oil salesman" to me when I read his description of himself (he has since removed it).


He now gives out very little info about himself. I also noticed that he has removed his "IRT discussion group" from the website after two or more of his moderators quit, apparently after realizing that the entire site was a scam. I guess he is trying to fly a little low on the radar right now. You can still see some of his "shills" giving IRT testimonials on the site, but a lot of the sales are being pushed by PM.


I researched him online and found that he was involved with various MLM scams over the years and all kinds of health-related schemes. (At one point he was offering some kind of "consultant service" to victims of cancer although he has no health care background and has not had cancer himself.


As you said, hcconn, it now appears that these scammers have found the mother lode of profit in lyme patients. Many of us are desperately ill and desperate for help.


I think it is just the lowest form of humanity that would take advantage of ill people. In addition, by pushing this IRT (a totally bogus treatment), he is causing these people to delay real lyme treatment, meanwhile allowing their lyme to worsen and then leaving them financially unable to get any kind of treatment.


It's really upsetting to me that people are being taken advantage of, especially when the victims are lured in by the promise of a "support forum"....but even though this is despicable, it is probably hard to prove that anything illegal has taken place...I wish, we could though.


Sherlock,

Hi! Welcome to lymenet.


Oxygenbabe,

What happened when you confronted this guy??
 
Posted by hcconn22 (Member # 5263) on :
 
Thanks for the feedback and support. I did not know how all would react-- but i'm just seeing more and more of this stuff targeting Lyme people--- and being sick I know it's tempting to think there is a quick fix-- if I only I jump in and pay some money.

I just don't want to see any more Lyme people taken advantage of...

As a group and patients I think we have the right to ask for credentials, qualifications and research, outcomes etc etc.

We also often get a bad wrap (Lyme patients) because we do try new things-- and then get labeled as more counterculture.

Anyway the key is be patient and be smart about your treatment choices.

And yes there are some good alternative options out there-- but no miracle cures.
 
Posted by luvs2ride (Member # 8090) on :
 
Whoops! IRT not IRS.

Sorry guys. I'm doing yearend taxes for our business and have IRS on the brain.
 
Posted by SweetEmotion (Member # 18833) on :
 
Let me just say that I witnessed first hand people from The Lyme Light being drug into this whole IRT scam and it is still continuing to happen.

Anyone who makes a profit off of Lyme patients should be behind bars for selling a miracle cure when these patients should be seeking medical help, not wasting money on a scam.

They will also tell you to stop your medications. To me this is endangering people's lives and health.

If IRT was such a miracle cure, people would be beating down the door to do IRT, not seeing LLMDs. This is not the case.

It makes me sick to see this happening and something needs to be done.

I urge everyone to stay away from The Lyme Light website for your own safety. Lyme patients are not for sale and should not be profited upon.
 
Posted by lymie_in_md (Member # 14197) on :
 
We have to be careful about legislation and scams. Yes scams exist and we have to vigilant. On the other hand, if legislators get too involved then truly helpful remedies might get caught in the mix. Even remedies used by llmd's that are outside big pharma's drugstore.

I believe informing people on the internet might be more effective. And it is a shame that some might take advantage of lymies or anyone ill for that matter.
 
Posted by seekhelp (Member # 15067) on :
 
While controversial, I highly recommend anyone read Lymenet Europe posts before buyng into stuff. There are some very smart posters there who logtically research things. While many have bad approaches, their overall intensions seem directed well
 
Posted by luvs2ride (Member # 8090) on :
 
Seek,

Some of those posters used to be here. They are still very sick, some after 13 yrs of nothing but antibiotics.

I do like to read the latest scientific research, but I do not like the put down on alternative medicine.

I am 100% functional and take only a small dose of 1 antibiotic. The majority of my healing has happened through CAM medicine and I have come a long way.

I do not have to worry about toxic side effects or monitor my liver for damage. I really like it that way and don't like being put down for it.

Some of the LNE posters were very harsh on anything alternative.
 
Posted by SoSublyme (Member # 15185) on :
 
I like to read LNE too...there is great info there. From what I can see, most posters there use alternatives as well as antibiotics, but are concerned about more of the "questionable" therapies.

What is "questionable" is different for everyone, but it is helpful to read everything you can (even if it is something you don't agree with) before making decisions about your treatment.

The science and medical articles there on the best I have found.
 
Posted by seekhelp (Member # 15067) on :
 
Luvs, I agree their approach is unacceptable and borders on slander at times from some threads. I certainly don't endorse any of that. BUT, they make me think. I like to read all viewpoints. Some of the stuff makes sense they say when I step back and give it consideration.

Now why are they not better? Who knows honestly. Many here aren't either. The bottom line is I don't know anyone on here in person, can't verify one story as 100% certain, can't review everyone's financials, product ties, etc. so I always keep an open mind. I'm not implying anything, but I take things with a grain of salt.
 
Posted by massman (Member # 18116) on :
 
Thanks luvs !
 
Posted by MustBeaPony (Member # 11179) on :
 
For me - both allopathic and 'alternative' medicine are required. My goal is to be completely abx free in the future, not there yet.

Scammers are preditors and we are learning enough to refute their claims.

These are hard infections, a very hard fight and hard questioning is necessary. We certainly don't need to be hostile and harsh. Great discussion!
 
Posted by MustBeaPony (Member # 11179) on :
 
For me - both allopathic and 'alternative' medicine are required. My goal is to be completely abx free in the future, not there yet.

Scammers are preditors and we are learning enough to refute their claims.

These are hard infections, a very hard fight and hard questioning is necessary. We certainly don't need to be hostile and harsh. Great discussion!
 
Posted by Tracy9 (Member # 7521) on :
 
FYI...we have an honest alternative to the Lyme LIght site, www.lymefriends.com. And nothing is being sold! It's a great group, many of us here from Lymenet getting to know each other better over there.
 


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