Lyme Disease Date: 09-14-11 Host: George Noory Guests: Tom Grier With a BS in Chemistry and Biology and an MS in Medical Microbiology (Immunology) from the University of Minnesota, Tom Grier worked in the pharmaceutical industry when he contracted Lyme disease. He'll discuss his misdiagnosis of multiple sclerosis and his subsequent scientific research on the microbiology of the disease.
Website(s): canlyme.com mdjunction.com
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sparkle7
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up...
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for any night owls the show airs tonight on Coast to Coast 1 am eastern time and 10 pm pacific time.
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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sparkle7
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It's a 4 hour show with a big audience - so it's good they are getting the info our there.
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Sounds cool, im not THAT much of a night owl though, any other way to listen/download?
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sparkle7
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You can listen to all the shows if you subscribe to Coast to Coast AM. It's not very expensive... like $6 for a month - if I recall correctly. They have segments you can listen to for free on the website, too. They usually post them the day after they broadcast the show.
With a BS in Chemistry and Biology and an MS in Medical Microbiology (Immunology) from the University of Minnesota, Tom Grier worked in the pharmaceutical industry when he contracted Lyme disease. He'll discuss his misdiagnosis of multiple sclerosis and his subsequent scientific research on the microbiology of the disease.
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sparkle7
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PS - sometimes people upload the shows from Coast to Coast to You Tube. Maybe check in a few days to see if anyone has posted it.
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Well, that could use a transcript - just finished listening to it for three hours! That included taking questions and comments from folks all over the country. I have to retire for the evening soon, but I'll post a few notes, and if anyone else heard, please post more.
The host, George Noory, really didn't know much but was open to learning. Tom was very patient with him and with every caller. He stayed very calm throughout, which made it easier to listen to him.
The point that it's an epidemic was made clear. Many of the callers were long-term Lyme patients.
The point that doctors are not recognizing nor adequately treating Lyme disease and co-infections was made clear.
And that many patients are turning to their own devices since they're not getting the help they need, so exploring all kinds of alternative treatment.
Tom got Lymed probably while running in the woods in Duluth, MN while a grad student. His blood smears were abnormal in his science class - that's what clued him in that something was off.
He eventually developed what they thought was MS, and he was on a waiting list for a nursing home when a neurologist at a hospital who had just returned from an international Lyme conference recognized he might have Lyme.
It took a year of treatment before the pressure in his head started to go down.
Then he obviously began to learn about what was going on. He mentioned stats showing the increase in the epidemic: in Pine County, MN, infected ticks went from 6% infected in 1988 to 60% infected in 2002.
He wrote a book about it in 1995, the Lyme Disease Survival Manual, made 3300 copies, was bombarded with questions by people all over the world, and discovered that folks at international conferences were all making copies of it, as they did not have information.
Wants to have autopsies done to study the degree of spirochetes found, but is advocating this privately, since he can't seem to interest any public health people to do this.
Says to google a video called "spirochetes unwound" to see them entering blood vessels in a mouse. Takes only a minute and a half for them to do so!
Said two researchers at either the Univ of MI or MN (hard to decipher my quick-scribbled notes) did Lyme tests in 1990 on 91 cardiac patients awaiting a heart transplant and found ketes in 21%.
Says he is making a Lyme documentary. I wouldn't be surprised if it's pretty scientific - he likes to get the evidence.
He prefers the illness to be referred to as borreliosis, or relapsing fever illness, since that is its scientific category.
The callers were all fairly ill, making the point that they were not recognized. One man recognized eight years later what he had when his daughter got suddenly diagnosed because of a bull's eye rash.
Says heat is an enemy and that we should treat with heat. Said the bacteria are affected by heat over 108 degrees. Wrap joints in a heating pad to make antibiotics work better.
One comment towards the end caught my attention - if anyone can add to this - he said that cranial nerves are long exposed nerves that have a lower temperature than other nerves in the body.
That comment was in reference to all the kinds of cranial nerve symptoms people can get early on. Even for me, neck and shoulder soreness were the first symptoms. I have never heard any discussion about temperature of nerves being significant.
I think the talk was successful - the host was open, asking Qs that Tom answered, and Tom gave thoughtful answers to the callers.
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sparkle7
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Thanks for the notes, Robin. I didn't listen to the whole show - it's on 1am to 5am on the East coast...
It was a good show. I learned alot.
Tom Grier mentioned that he had an "insider" get him a drug that crossed the BB barrier - which helped him. He said it cost $800 but his friend (who I think was an AIDS researcher) sent it to him for free & (if I recall correctly) greatly improved his health. I wonder what it was...? I don't think he mentioned it.
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Great job Robin with your notes, I awoke at 2am and listened to the show in the dark until I fell back asleep at 4:30 so missed the last 30 minutes.
Yes Sparkle, I am interested in the drug the AIDS researcher sent to him, he never mentioned the name. Interesting the researcher said he couldn't provide the medicine to him and when he got home the med. arrived in the mail.
He did say one of the symptoms was a crunching sound when you turn your head from side to side and when you get rid of lyme this goes away.This was a symptom I had and it was very annoying, I still have it a little but not near as bad.
That the penicillins do not work against Lyme and he believes only ABT can cure Lyme not any of the alternative methods except oxygen (HBOT) and heat, like you said Hot Tub at 108 degrees, the normal hot tub temperature of 105 degrees was not hot enough and that it only worked to kill Lyme in the skin.
He mentioned the class of antibiotics that work against Lyme but I didn't recognize any of the names and I wasn't taking notes.
The best part of the interview was that it was done at all as George and Coast to Coast have a large audience so they are learning some of the truths about Lyme.
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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About the med from Mexico - he said he learned that folks with AIDS were getting meds from Mexico. I remember that time here too, when people with AIDS or their friends were going across the border for meds.
And that he couldn't go to Mexico, so someone who knew Tom sent him an $800 supply of the med - I think Tom said he paid him afterwards,
and no, he didn't mention the name, but that it worked in six weeks time. It was a drug that could get into the brain.
I can post more this evening about the interview -
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glm1111
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Is he referring to laetrile (B 17)? Popular back when Steve Mqueen was going to Mexico for tx.
The more I read about the brain/gut connection, the more I am wondering if a medicine has to actually cross the blood brain barrier to kill the infections, which originate in the gut and disseminate from there anyway.
Why is it that if we ingest coconut oil, it can clear brain fog? A stimulant such as adderral or coffee, also clears the head. Concersely, sugar and gluten can cause all kinds of brain disfunction.
Dr. Michael Gerston, author of "The Second Brain" discusses the connection in his book. If you google brain gut connection there is some very interesting info as well.
Any Thoughts?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Can someone send me his contact phone number? I can get him on a radio show that airs earlier in the evening so everyone on the internet can listen to it.
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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glm1111
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Really? He found an aids medicine that he says works and doesn't mention the name? Anyone know why he doesn't acknowledge what that medicine is?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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thanks for this synopsis. I heard most of the interview, and thought it was well done. I fell asleep for a time, and did not hear it all. Help me here: did Tom say anything about Tuskegee, or how physicians are harrassed for diagnosing and treating Lyme?
Your link goes to a dead end. But here is a NYT 9/16/2011 Lyme article;
It admits Lyme can be difficult to diagnose, but not the medical community's preference to deny, rather than diagnose.
"Rarely, a person will continue to have symptoms that can sometimes interfere with daily life or activities. Some people call this post-Lyme disease syndrome."
The IDSA spin is "standard" NYT Lymefare?
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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onbam
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MattH-
We can't get actual body temperatures high enough to kill the spirochetes in organs/muscles, as this will kill us. But we can kill some of them in the skin by getting with shorter, hot baths, or sauna. Please DO NOT try to get temp up to 108. Even 103-104 is considered a medical emergency.
Neil-- No, the show did not get into the attacks on llmds except to talk about what Dr. Jones is going through, and did not mention Tuskegee.
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Hi Neil - looks like onbam just answered you.
Matt - lots of us do short-term saunas. The FIR sauna can get up to 158 degrees. It's more for detoxing than for kete killing, though, I think.
I think we'll have to google Coast To Coast and search for Tom Grier, and find out which link is going to work - I haven't found it yet and don't have time now to hunt for it - when someone does, can you let us know here?
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The fourth,third,and second listings on this page for parts 1,2,3 of the interview as of the time I write this....(naturally,subject to change)...
This link worked - or just search "Tom Grier, Coast to Coast" on Youtube
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I'd be interested to see if I can find the drug that crossed the BB barrier. I'll do some searching to see if I can find it. I don't think it was laetrile but who knows? I think that more for cancer than AIDS or crossing the BB barrier. Laetrile actually comes from the inner kernels of peach or apricot pits from what I have heard.
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sparkle7
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Maybe someone could contact Mr. Grier & ask him what the drug was?
A solution not currently being pursued is better drug delivery systems. In 1991 I proposed to the company I worked for at the time, Wyeth labs, that research be done on better CNS delivery systems for amoxicillin.
With the advent of diseases like AIDS and Lyme it seemed that we needed a better way to get drugs safely into the brain in higher concentrations where they were needed. While old drugs like amoxicillin can no longer be patented, the drug delivery systems can be patented for more than a decade.
This could give new life to many old drugs. Better delivery systems make dozens of drugs available rather than just concentrating on a singly new drug option.
Devises that optimize direct infusion of antibiotics into joint and brain is one method of accomplishing this, and the use of fat soluble carrier molecules conjugated to or surrounding the drugs is another method (lipo-spheres, DMSO etc). The response to a 28 page proposal that I drafted in 1991 to my employer, was a single sentence in a short letter.
� Dear Mr. Grier: At this time there is no interest or economic feasibility in developing new treatments for Lyme disease ...there are not enough new cases of Lyme annually to warrant development of clinical treatments. �
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I did find some info on Mr. Grier's background (probably from the same link posted above) & he did work in the pharmaceutical industry - so, he must have had some good "connections"...
Neil - I don't think we will find much useful info from the NYTimes any time soon... We have to dig deeper. Most of the really controversial stuff will be in other places - not most "mainstream" media. I know some will roll their eyes but Jesse Ventura did a good show on Plum Island - http://www.youtube.com/watch?v=bN1tpVQ6koA
I think his shows are pretty well researched - but he's "preaching to the choir" to me about this kind of stuff.
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sparkle7
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I am a long time listener (12years) to" Coast".I always believed that Lyme disease would be a perfect topic for this show. I thought Mr Grier was an eloquent spokesperson and did a fine job answering Mr. Noory's questions. Im glad this was aired as think the show has a nightly average of 16 million listeners.Getting the word out!
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glm1111
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If stimulants like coffee and adderrall can stimulate the brain by ingesting them, then why can't some other substance that kills the infection do the same thing?
The gut also known as the second brain needs to be understood better. What we ingest can change our mood, cause brain fog etc.
There are over 100,000 neurotransmitter in the stomach. Dr.Michael Gerston is the author of "The Second Brain" and talks about the connection.
Sorry, didn't mean to sidetrack the topic, but this thought occurred to me when Grier mentioned the drug he took.
Gael
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