seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It doesn't seem like anything major based on recent writings. He probably just wants to keep his face out in the Lyme world. Maybe he will make a triumphant return to LLMD stardom at some point!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
He may be involved in active research or clinical trials at the present, but it is pretty hard to find that info out. Most researchers keep the exact details of their work out of the public eye until the results are published.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
| IP: Logged |
posted
He is working on a universial data base on Lyme and symptoms from what I read with funding from a Time for lyme.
Posts: 131 | From ontario | Registered: Oct 2010
| IP: Logged |
posted
I think he is also looking at what else might be impeding lyme patients return to full health, such as viruses, retroviruses, etc. He is interested in all the aspects of this illness, including hormonal, coinfections, and on and on. It is not the simple ailment with a quick fix, as we all know. That is not to say that improvements in lyme treatment are not also of interest, but we need a lot more research to be done in all facets of the problem.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I bought the DVD of his speech at CALDA March 2011. Most of what he said we already know but he discussed bornavirus and some other things that was interesting.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
I am grateful for any kind of research being done on this horrible illness.
But IMO, this debate is going to be settled by one thing only. And that is visual identification of Bb in the tissue and fluids of patients that the IDSA says do not have or ever did have lyme. This means either post or pre mortem examination of tissue and fluid samples.
Nothing else is going to settle this issue. All of the great activism that has been done by various individuals and groups has done virtually nothing to change what us lyme patients are up against. The IDSA, the CDC, the "prestigious" hospitals, all of them are just as hostile to chronic lyme as they have ever been. And unfortunately, some of those organizations seem to be getting even more hostile.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
It has to be studied at the celluar level. It's not a simple blood, tissue or organ bacteria.
The same with all the bad buddies that come with it. These are super duper bacteria and they are more than anyone wants us to know.
It one tangled webbed mess that is effecting people around the world. It's buried so deep in our beings.
Nobody is telling the rest of the story. If I sound like I'm saying this is some BIG secret lie that is being feed to the general public.....
I am. I believe there are great people with great minds and experiences out there trying to help millions and millions of people find answers.
We thought the world was in a panic when the truth about HIV & Aids came about? Wait till the world finds out what is really making us ill in hundreds and hundreds of ways.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I just watched a DVD from Dr. K's recent seminar with both Dr. B. and Dr. K. exchanging lots of info casually sitting together in front of a very interested audience of professionals. And also remarking about the think tank they attended together.
I am enjoying just looking at some strong minds and characters. They are in contact, let's put it that way and I got the distinct feeling that they are on the same wavelength.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Dr. B is doing a lot, guys. He is not irrelevant at all. Lou is right, he's doing a lot with looking at viruses and retroviruses, like XMRV that many of us have without knowing it or knowing how to treat.
And the database. And supplements that are important. And many other things I may not be at liberty to speak about. And he IS talking about this stuff a lot publicly. It's not a secret, and he's hardly cooling his heels.
And, yes, I saw Dr. K and Dr. B speak together in Feb.; it was great! A lot of exchange of ideas and mutual admiration.
This stuff doesn't happen fast, as we would wish.
And, yes, Dr. B did speak up against the IDSA, etc. in Congress. For that they went after him twice to take away his license. They didn't like that at all. It cost him plenty. It's a major miracle that he came out of it with his license intact---and his life intact.
Posts: 3770 | From around | Registered: Mar 2008
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Gigi, I KNOW YOU ARE CORRECT. There is no doubt in my being that these 2 fabulous doctors are going to help us.
Here come the tears. I get emotional just thinking about. My HOPE will not die. My TRUST will not die.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
His recent talk at University of New Haven focused on the need for an accurate Lyme test.
If we have a valid test, we can tell who to treat with antibiotics and who might have some other condition. It makes so much sense.
I wonder if he is involved in this type of research?
racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
| IP: Logged |
James1979
Unregistered
posted
Why do they have accurate Lyme tests for dogs, but none for humans? Are we really that much worse than dogs?
IP: Logged |
James1979
Unregistered
posted
Are there any online videos of the discussion between Dr B and Dr K that you guys mentioned above?
IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Believe me don't waste your time thinking it's going to be a simple Big Pharma pill. It's not!!!!!!!!!!!!!
Big Pharma can't produce a new med in time for us. The FDA wouldn't approve it quick enough.
So if you are thinking that magic is going to happen with any government agency being helpful or giving a rats arse that WE today are illl and need something NOW.
We will die waiting. They BIG PHARMA is not going to be our saver.
It will take more than their little minds can even comprehend.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
My personal feeling is that the answer will come neither from Big Pharma nor from doctors involved with clinical treatment. Science needs total objectivity in order to progress toward truth. Both medical doctors and pharmaceutical companies have biases in their research. The doctor is biased toward the successful healing of his patients, Big Pharma is bias toward profits.
Many years ago I worked in a research lab that studied the efficacy of various anti-cancer drugs used in breast cancer, and the effect that daily/monthly cycles had on the body's tolerance of these drugs. The general field is known as "chronobiology". Since powerful anti-cancer drugs like Methotrexate and Cisplatin are toxic to healthy cells as well as cancer cells, the dose that might be curative could also be fatal.
The basic question we were concerned with was, "Is their a time during the day or during the menstrual cycle that cancer treatment might allow the highest possible dosing with the minimal effect on healthy cells?" If there appeared to be such a time after conducting extensive experimentation, clinical trials might then be approved for higher dosing, with the hope that these higher dosing schedules might bring about a more favorable outcome.
A major problem as I came to see it was that he lab was run by two oncologists with outstanding reputations who also maintained active clinical practices. I knew I was in the wrong place at my employment interview, at which time Dr. H told me, "I'm 100% positive I'm right, I just can't prove it yet."
This was not science, this was a man with an agenda attempting to validate his pre-existing convictions.
Of course, I was fresh out of school and desperately needed a job, so I took the position. Once in the lab, I discovered to my delight that the two doctors (husband and wife team) were not actively involved with the day to day operation of the lab per se, but they did procure 100% of the funding for our research. Therefore, the PhDs who actually designed and controlled the experiments and analyzed the results were free to conduct them as they wished... as long as the experiments themselves were set up to look in the direction that Dr. H and Dr. W wanted them to examine.
This is a classic conflict of interest.
There was so much bitter infighting and political posturing in the lab that nothing ever really got done. In the end, the good doctors packed up and headed south to set up a new lab... with their millions of dollars of NIH money traveling along for the ride. They never published a single research paper in the 8 years they were here.
Map1131 is absolutely correct. We are ill today and we need something now. Unfortunately, that desperate approach is akin to shooting arrows at a running rabbit with your eyes closed in the dark. You may eventually hit it, but it will take an awful lot of arrows. Real science is methodical and painstakingly slow. It will take years, maybe decades, for the answers to emerge. Of course, someone needs to be looking for them in the first place.
Hopefully, increased Lyme awareness will bring about an increase in Lyme-related grant proposals being written by brilliant scientists in universities all over the world. Forget health foundations (WHO, CDC), large medical facilities (i.e. Mayo Foundation), and even concerned physicians. Once a doctor crosses over from clinical practice into research, he or she needs to leave their personal agendas at the door and embrace true objectivity. Short-term gain has no place in science.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
| IP: Logged |
posted
I was told by someone here that funding was withdrawn in the early 90s for an accurate Lyme test - ie, it's political why we still don't have an accurate test.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I'd be curious to hear more about that. A blanket statement that "funding was withdrawn" means nothing, since there are numerous sources of funding and grants are continually being written and re-written. Can you be more specific?
It is totally possible for the NIH (as an example) to refuse a proposal for funding that they had previously granted. A lot of that has to do with the progress of the research, the total budget, new and more promising research needing the money, failure for others to replicate the results... could be a thousand reasons.
The biggest and most illustrious labs get the vast majority of the funding because they publish frequently and they have positive peer reviews of their work. There is an awful lot of disease in the world that claims many more lives than Lyme ever has. There is only so much money to go around (and never less than at the present), so you had better show some very promising results and publish them quickly if you have any hope of getting continuing funding.
Don't forget, either, that Big Pharma has more money to develop things like tests and drugs than the government dreams of ever having. Congress has historically been very stingy with their health research budget, but the pockets of the pharmaceutical companies are deep. If there is a buck to be made, they will be the first to push a new test through trials.
OTOH the entire NIH budget is only about 30 billion a year. Only 80% of that is awarded as competitive grants, meaning 24 billion has to be spread over about 50,000 grants. That's an average of less than $500,000 per grant awarded. Fully half of that money will be absorbed by administrative costs at the university level. $250K doesn't get much done in a research lab. If that seems like a lot to you, consider this: I've read of Lyme treatments costing up to $100K for a single patient.
quote:NIH Budget
RESEARCH FOR THE PEOPLE
The NIH invests over $31.2* billion annually in medical research for the American people.
More than 80% of the NIH's funding is awarded through almost 50,000 competitive grants to more than 325,000 researchers at over 3,000 universities, medical schools, and other research institutions in every state and around the world.
About 10% of the NIH's budget supports projects conducted by nearly 6,000 scientists in its own laboratories, most of which are on the NIH campus in Bethesda, Maryland.
posted
Wow, fogged, thanks for the peek inside of research. I guess all we can hope for are clinical breakthroughs, because it doesn't sound like they are going to come out of a lab any time soon.
Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Fogged, I hope BP isn't spending all the money trying to find the most expensive cancer tx they can use next.
We wouldn't want insurance companies and Americans to have a simple cheap cancer tx? No siree?
Let's drive up the cost of healthcare! Let's put more money on the bottom line and screw everyone that gets the big "c" dx.
Fogged I'm not demeaning your message here. I'm just not a NIH fan or BP fan these days. I'm pretty ticked off at the system and the way it works.
I wish I was a fly on the wall sometimes. I don't believe what "they" tell us anymore.
Reading the obits everyday doesn't look to me that they've made any progress in the last 60+ yrs with cancer.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
James1979
Unregistered
posted
Pam, you should watch The Burzynski Movie. You'll see how hard the FDA and other organizations fight to shutdown any new cancer cures.
IP: Logged |
posted
Map, I'm just trying to give some perspective on the research money. I'm not an NIH fan at all, and BP... well, c'mon. lol
Besides the terrible pay I got as a lab assistant (hell, even the PhDs start at about $25K in most medical research labs), the main reason why I quit was because of all the mismanagement and downright abuse of the system by many scientists.
The "good Drs" I worked for were always headed for chronobiology seminars all over the world. When there was one nearby in Syracuse, they said the lab had "too much going on" (false, we were in between major experiments), so they wouldn't be going to that one. When I asked one of the senior researchers the real reason they weren't going, she said, "The skiing sucks in Syracuse." Turns out they only went to the ones in places like Lake Tahoe and B.C, and arty places like Milan.
The costs for very one of these trips came out of our research dollars, and each one cost about half of my yearly salary for them both to attend. To add insult to injury, my salary was written into every grant proposal they submitted, even on ones that I would never lift a finger to assist on. In effect, NIH paid for me several times over, and there is absolutely no oversight of such expenditures once the money has been disbursed.
Dr. H once told me, "I'm untouchable.", meaning he would spend the research money however he deemed fit once he had his hands on it. An great example is that he tried to purchase a $125,000 DNA microarray analyzer that was absolutely useless for the kind of work we were doing (although, ironically, I'll bet it could be put to good use in Lyme research). It was such state of the art equipment at the time that few scientists really knew what it could be used for. It was merely a feather in his cap for the lab to own it. In the meantime, we were suffering with antiquated equipment that we used every day that he refused to replace with functional stuff for budgetary reasons. In the case of the DNA microarray analyzer, the two senior researchers were so furious that they threatened to quit if he purchased it, so he was forced to back down. The most pitiful part of it was, the guy didn't have a clue what it even did or how it worked, in spite of hours of explanation by his senior PhDs. He just kept insisting that if we had it, we would find a good use for it.
This may seem to be a worst case scenario, but I'm fairly confident this sort of thing happens every day. Giving the NIH twice the money won't fix things at all without proper oversight and accountability. On the one hand, they can't hamstring the researchers by attempting to micromanage all of their expenditures, on the other hand, vast amounts of money will continue to be squandered if they don't. This is a huge part of the reason why there have been no real advances in cancer treatment or a cure for AIDS or MS or ALS or CF... or Lyme. And in the meantime, clinicians are making stabs in the dark hoping something they stumble upon will provide an effective treatment for these diseases.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Fogged, I can't image seeing it, living it and knowing how the system works. How it must be a downer to know the truth.
So you must understand my anger lately with FDA, CDC, NIH, Big Pharma, and everybody in between, esp the gov.
All I had was a 28 yr degree in retail mdse and operations, self taught. But I know politics and how it's all played. I just refused to play bullsh!t games.
I guess I'm just fired up over the bull that comes with this illness. I'm actually very blessed to have a PCP in my city that takes care of me. I've been very blessed that way.
Sometimes I just want to scream!!! I get upset with every cry for help that I see on this site. I want to make a difference.
I'm so tired of dumb, dumber and dumbest. That being the system from A to Z.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
Pam, you are correct, it is a downer beyond belief. I have a very grim view of the world in general, and it grows grimmer with each passing scandal that gets uncovered and then conveniently swept under the rug.
Financial corruption is in all three branches of government, it is in the military, it is in the central banking institutions, it is in our legal system, it is in our police departments, it is in our education system, it is in our insurance institutions, it is virtually everywhere. But most sadly for me, it is deeply entrenched within our health care system.
As someone who spent his entire youth preparing and studying to enter the medical perfection, I find it disgusting that any doctor who has taken the Hippocratic Oath would allow the pursuit of money, power or fame to affect either his clinical judgement or investigative research. It should never be about these things. Practicing medicine is a calling not unlike that of an artist, or an explorer, or a writer, or a musician, or a clergyman. You are called to heal, and you do so at whatever level you have the ability to do so.
I believe that we know early in our lives what we will be best suited for, but the system that has been in place for at least the last 60 years pushes our youth in directions that may not fulfill them, for which they have no passion, and for which they may be very ill-suited. The carrot of materialism, fame, and wealth is dangled in front of their noses from early on, and most of us chase it throughout our lives. Perfect job, perfect spouse, perfect children, perfect home, perfect car, financial freedom in retirement - all of these things will be yours if you just follow the plan they have for you. And the better you follow it, the larger your share will be.
I consider myself fortunate that I was raised to know these things are illusions and have nothing to do with living a happy and fulfilling life. I didn't follow the plan, and so, I never was able realize my goal of practicing medicine. I am OK with that. I can say this, though. At no point in my young life was money ever even a consideration influencing my direction. I kinda knew I wouldn't starve, but I only wanted to keep people well and heal them when I couldn't. That is the greatest reward any doctor could ever receive.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic