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Posted by henson2 (Member # 463) on :
 
Dear Friends,

I haven't been here in a while, and am learning my way around again. I can post this in Activism if it is more appropriate.

I'm concerned that yet a new source of misinformation about Lyme has appeared.

There's a new DVD/ CD out in the lecture series presented by The Teaching Company. You may get their catalogues; they offer the "Great Courses" in video, DVD and CD format. You can listen to a college professor's lecture during your commute, or watch one on your DVD player. The audience tends to include professional people (i.e. physicians, scholars) who want to learn about other fields.

There is a new course being offered. By (among others) a physician from Yale.

It's called "Medical Myths, Lies and Half Truths." And in Lecture 13, Professor Steven Novella of Yale and Georgetown talks about Chronic Lyme Disease.

I called the company to ask how he presents it. "Only the most scientific, approved, Western medicine approach," I was told.

Full disclosure: I have not yet viewed this. It costs $139 to order the whole course. But I did tell the customer service operator that if a Yale physician is going to debunk Chronic Lyme Disease as a "myth" then the Lyme community is going to respond.

Someone of us needs to screen this. Please feel free to circulate/ share this info.

Here is the address of the company.
[email protected]

phone 1-800-832-2412
9:00 a.m. to 12 midnight eastern time Monday through Friday; and 9:00 a.m. to 5:00 p.m. eastern time Saturday and Sunday. After hours, an automated voice mail system is available.

Mail: The Great Courses, 4840 Westfields Blvd., Suite 500, Chantilly, VA 20151

Fax: 703-378-3819

Sending wellness to you all
 
Posted by Rivendell (Member # 19922) on :
 
Wow! Thanks for keeping us up-to-date.

I guess they are trying to put down "Under Our Skin".

This whole thing is sooo crazy. Just because of greed and power.
 
Posted by henson2 (Member # 463) on :
 
Hi rivendell, thanks for the reply.

I was in the hospital this weekend for an unrelated issue. The topic of Lyme came up, and the nurse said she knew all about the Lyme "controversy." Why??? I asked. Why do they not look at the peer reviewed research that is already out there? She said, "Egos are involved."

At least that's one nurse in one hospital who knows the truth.

And she wanted to learn as much as she could from me. (!)

It's getting out there, just slowly. I do hope people hold this company accountable for its presentation of Lyme.

I hope you're feeling better very soon!
Wellness wishes to everyone.
 
Posted by onbam (Member # 23758) on :
 
"Change we can believe in."
[cussing] [cussing] [cussing]
 
Posted by purplemom (Member # 21064) on :
 
I'm familiar with the teaching company. They offer a money back guarentee (maybe minus shipping costs but you can usually find a free shipping code by googling it) So you can buy the video set and return it when you find you are unhappy with the talk and the problem that it ignores other research. I think it is a lifetime guarentee but woul haev to check on that. So some one should get it and review it for sure
 
Posted by MattH (Member # 30846) on :
 
I looked at the course also. Dr. Steven Novella's "Medical Myths, Lies and Half Truths." presents such learned lectures as Homeopathy - One Giant Myth, Myths about Acupuncture's Past and Benefits, Facts about Toxins and Myths about Detox, Vitamin and Nutrition Myths.

Dr. Novella, an assistant professor at Yale, has also contributed to Quackwatch, a very Pharma friendly website.

MattH
 
Posted by Rivendell (Member # 19922) on :
 
I'm glad that the nurse was up-to-date.

EGO is such an ugly creature.

Dr. Novella contributes to Quackwatch. What a QUACK he is!!!
 
Posted by BrainStorm (Member # 31810) on :
 
quote:
Originally posted by MattH:
I looked at the course also. Dr. Steven Novella's "Medical Myths, Lies and Half Truths." presents such learned lectures as Homeopathy - One Giant Myth, Myths about Acupuncture's Past and Benefits, Facts about Toxins and Myths about Detox, Vitamin and Nutrition Myths.

Dr. Novella, an assistant professor at Yale, has also contributed to Quackwatch, a very Pharma friendly website.

MattH

Hm... Looks like that really good doctor.
I'm agree on all points abouth these myths.

Also agree that Lyme disease is not exist in form which is now postulated.

Yes, there are a lot of ill people but they don't have Lyme, Babesia, Erlichia or Bartonella.
All this is real hugest medical fake\fraud\bullsh**.

I wanna note that all these people are REALLY ill and their disease have BACTERIAL etiology, but definitely not Lyme or Bart on anything else from lists of Lyme organizations or guidelines(like Dr. B for example).

One again i'm talking that people really have an infection, but nobody wants to really figure out what exactly.
 
Posted by nhlymeguy (Member # 30783) on :
 
BrainStorm,

What is your research, and what are you close to?...what are your theories?
 
Posted by BrainStorm (Member # 31810) on :
 
quote:
Originally posted by stillwater:
If you don't know who these people are, then you don't know squat about Lyme disease.
Get educated about the disease and the controversy, then you might be taken seriously.

We don't need that.
We use pabmed\medline etc, but not google or forums, yeallow press etc for info.

In CIS region there is no such problem like chronic (pseudo)Lyme, but do exist problems of chronic fatigue syndrome and fevever of unknown origin.
In fact the syndroms are one disease with the same etiology.

And we don't trust on word any info from some medical "BigNames". All people can be mistaken and most part of them are corrupt\mercenary.

So we used to check all by ourself even in cases if there are hunders of opposite publications to our opinion.

For today there no any proven base about "Lyme syndrome" etiology.

Relax man, these questions not for your mind.
I even don't know why i'm writing this....
 
Posted by MattH (Member # 30846) on :
 
Response to BrainStorm,

Well that is how Lyme is, the great imitator but on this issue I am going to side with the LLMD's that daily stake their practices on their desire to help those with Lyme and Chronic Lyme.

Three months ago, I was referred to an infectious disease doc and set up the appt., the nurse called back and said how long do you think your son has had Lyme, I said 3 1/2 years we think, she said the doctor does not treat that type of Lyme!

I do not side with those that receive speaking fees from big Pharma and push a one size fits all approaches. So Novella calls acupunture a myth, so I guess the Chinese have used it for 2000 years because it does not work! Yeah that happens all the time and patients keep going back because it does not work! Please show me the study that is does not work, I need the scientific evidence!!!

I guess we just do not know how powerful the placebo effect really is, we all must be really stupid and actually disease free! Today I am writing my university to get my Mech Eng tuition back. With interest it should be north of 150k, so I will have the funds to buy Novella's DVD.

To sum up, your point must be, we do not know what you have, we do not know how to treat it, but we know (according to IDSA) that you do not have Chronic Lyme and a big break through is right around the corner. Boy I can't wait for the price on that prescription!

So all of us should call our doctors, postpone our appts. and wait, wait and wait. Perhaps one should realize that is how most of us got here, becaues we were misdiagnosied and waited until we got so sick we had to get knowledge and the then help from doctors that are not afraid of their state medical boards and the eventual inquistions.

Note this site is about each of us helping each other to move forward with our conditions. We are learning and helping at the speed of thought. This is truely an amazing gathering of afflicted travelers giving time and knowledge to help each other.

We may have to have patience but we are no longer going to wait in the dark and suffer alone!

All the Best, MattH
 
Posted by BrainStorm (Member # 31810) on :
 
quote:
Originally posted by nhlymeguy:
BrainStorm,
What is your research, and what are you close to?

We suppose one of 2 possible pathogens, which we have found in patient sterile(by default) tissue samples (biopsy).

There are full clinical and pathogenesis correspondence from both points.

So for today we are just collecting patients samples to get some statistic basis.

When we get stastistic basis then we will initiate animal models of infection and will design official research in compliance with evidence-based medicine.

Sorry, i can't share theories until we will know for sure.

PS. Sorry for my english- it isn't perfect.
 
Posted by MattH (Member # 30846) on :
 
BrainStorm,

My LLMD has over 400 patients in full remission, several hundred others on their way.

You have an ongoing study. So you tell us on the Lymenet, we really do not know what we are dealing with but you share no proof.

I believe in innovation and breakthroughs but to simply attack people's basic understanding of Chronic Lyme on a site without proof, foundation, or standing?

Your english is fine, your logic is the challenge.


MattH
 
Posted by BrainStorm (Member # 31810) on :
 
quote:
Originally posted by MattH:
Response to BrainStorm,
So all of us should call our doctors, postpone our appts. and wait, wait and wait. Perhaps one should realize that is how most of us got here, becaues we were misdiagnosied and waited until we got so sick we had to get knowledge and the then help from doctors that are not afraid of their state medical boards and the eventual inquistions.

Note this site is about each of us helping each other to move forward with our conditions. We are learning and helping at the speed of thought. This is truely an amazing gathering of afflicted travelers giving time and knowledge to help each other.

I'm agree with on this point. It is excellent that webcources like this do exist.
I'm also agree that a lot of people for today just have no other options except to recieve Lyme diagnosis and start therapy.

I'm only talking that it is very strange that for today nobody wants to find real cause.
According to accepted guidelines most therapy there is in fact empirical and moreover ,if we are right, there are a lot of antagonistic recomendations there, which can damage patients.

Regards,
 
Posted by MattH (Member # 30846) on :
 
BrainStorm,

I sincerely hope you are on to something special!!! If you are, your information and or breakthrough will spread rapidly through this site and others.

MattH
 
Posted by sixgoofykids (Member # 11141) on :
 
Brainstorm,

You say people do have a disease that is bacterial and is chronic, and thus far hasn't been treated properly or they would be better. Am I understanding correctly? You have two possible pathogens that might be the real cause?

You're not denying Lyme patients are sick, you are trying to look outside the box. That's how I'm taking this, am I right?

I *do* think we need to look outside the box. I *did* look outside the box and I am well. I have reached a greater level of health than I ever thought possible. So, we're in agreement that you need to look outside the box.

But, where we don't agree is whether people have borrelia, bartonella, babesia, and erlichia. Many of us test positive both in conventional medicine (Western Blot) and alternative medicine (energy or muscle testing) for these pathogens.

Is it possible, and I say this because you are presenting yourself as a researcher (??), that perhaps the pathogens you are finding complicate Lyme Disease so that it's harder to treat?

I have had Lyme Disease since I was a child. The earlier form, as Dr. H in Under Our Skin mentions, was easier to treat. I could manage my health with diet, exercise, and supplements. I was in remission with three major flares over the years. I was symptom-free if I was vigilant with my health. But, if I drank alcohol, didn't get enough rest, got under stress, etc. for any length of time, I would have symptoms pop up. Taking the burden of amalgam fillings/ mercury off my system made staying in remission easier. So the toxicity was a player in my illness.

When I got bitten again and really crashed to the point of being disabled, the disease was much harder to treat, just as Dr. H says in the film. I was much sicker. I am a CDC positive case. I got better to a certain point with medications, but always had ups and downs.

I did an alternative treatment that in the end got me well. I no longer have to be vigilant to stay healthy (though I am because this is how I was raised, but if we go on a trip and I eat a bunch of junk, don't get enough sleep and drink alcohol every night, I do not relapse).

If any of you have stuck with me this far, finally, here's my question. Could what you're seeing be something that complicates Lyme Disease and makes it more difficult to treat rather than being the cause of it?

Recent studies on spinal fluid have shown that CFS patients have different proteins than Lyme patients, and both Lyme patients and CFS patients have different proteins than health people. The CFS patients and Lyme patients (I know some Lyme patients have CFS as a symptom), have something different going on. Could what you're talking about be an underlying similarity.

Just throwing out more food for thought. I got better .... I know I treated borrelia to get better and maybe in my alternative treatments inadvertently treated other pathogens (that was the idea of the treatment) .... BUT, again as Dr. H has said in talks, Lyme Disease isn't any longer the right thing to call what we're dealing with, it's really multiple pathogens making us ill.
 
Posted by nspiker (Member # 22824) on :
 
Many of us are treating lyme and co-infections and getting better. Thank goodness we have LLMD's who are willing to treat us, because without them we would all remain sick. Are we treating lyme, or other unknown pathogens, that is the question?
Many, like myself, have no known tick bite and no positive lyme tests.

Are you familiar with the findings of Fry Labs and newly discovered hemobartonella and protozoa, encased in biofilm?

I am grateful for any research that helps us to understand all that contributes to what we call chronic lyme.
 


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