Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Okay, I'm a newbie here. Yes, I've read all the newbie links and many more than that. I've read everything I can possibly find for the past month. So, no I'm not really a newbie.
It still baffles me why Lyme is so undiagnosed.
I'm concerned because everyone promoted Doctor C in Missouri so much. Then when I read the threads about seeking a doctor, people are questioning him and the costs that are involved.
Would someone please be upfront about this?
All these doctors who don't want their names mentioned? Why not?
Good Lord, I hope I haven't made an appointment with a quack. I want someone who will do the proper testing, nothing more than that. Is that so hard to ask ?
posted
To start off with, I live in the Uk so things are different here ( but probably not that different). My specialist sent me a newletter a while ago- he sends this out to all his patients- one of the notes in it was asking us not to tell our doctors that we have Lyme but to call it 'borreliosis'. Apparently calling it Lyme gets him into trouble - our health service says that Lyme is only carried by ticks and will they will only recognise Lyme with evidence of a tick bite.
I can only think that Lyme is shrouded in this cloak of mystery because if people new the truth about this disease there would be mass hysteria- I think that whole issue is being dumbed down.
I am convinced that the huge numbers of people that we have in this country who have ME actually have Lyme - whoops, sorry I should say 'Borreliosis'. I add, that this is just my thought on the whole lyme debate.
This website makes interesting reading as to the investigations and figures of Lyme in the UK.
posted
i agree,i just read a Swiss,news article on Lyme,and they feel some patients will never be cured.Antibiotics will not kill the bacteria.If i have to live in mysery,i would sure like to know the truth,but after 11 years,i think i the cure i thought was around the corner isnt coming,just gotta keep it in control i guess.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by 8man12: i agree,i just read a Swiss,news article on Lyme,and they feel some patients will never be cured.Antibiotics will not kill the bacteria.If i have to live in mysery,i would sure like to know the truth,but after 11 years,i think i the cure i thought was around the corner isnt coming,just gotta keep it in control i guess.
I've seen this statement a few times on this board that abx doesn't work. Scores of people will tell you diferently. Abx is extremely effective in most cases. However, there is a small fraction that don't respond to it.
The vast, vast majority respond very well, especially if caught within a reasonable time frame. I know people who were ill for several years, received prolonged abx therapy, made a full recovery, and have never needed abx again.
LLMD's have cured tens of thousands of patients on an individual basis. There's hundreds of thousands that caught their disease early, were given abx, and never had lyme rear it's ugly head again.
If you've been on abx for some time and not recovering, perhaps you need to change meds, treat co-infections first, supplement, or visit alternative treatments. People have beaten this disease several ways, there is hope. Never stop looking for answers, and never stop being vigilant in bringing attention to this disease legislatively, and in the public arena.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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quote:Originally posted by Boomerang: It still baffles me why Lyme is so undiagnosed.
Because the tests used on a regular basis in this country are LOUSY and drs are taught to rely on them. They are not taught to clinically dx something based on "deduction" or common sense.
They are also harrassed if they prescribe abx for longer than 4 weeks. So why would a dr want to dx something he can't adequately treat?
Only our LLMD's have the guts to do what is right!
About Dr C....One person in "Seeking" had a question about his charges. He was told something by someone new in Dr C's office, I presume. I called his office and asked for a clarification in order to help this person figure out what the charges would be.
He is an awesome dr, that's for sure. He has no miracle cure, but he works hard to get his patients well. He loves it when his patients can "fire him!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Have you read up on Lab257? Beginning in the early 1950's, it chronicles the evolution of a US Government Lab located 2 mi. NE of the Hamptons working with Borrelia bacteria for biological warfare. Over the years the bacteria was leaked into our water and the 1st evidence of this was the outbreak of severe childhood rhuematoid arthritis in Lyme CT, hence the name.
Many times over the years the bacteria escaped the lab and got into our water. Birds landed on the island, flew south over the eastern seaboard carrying ticks and disease.
West Nile Virus broke out in the NE as did MS and of course LD. Lyme can be described as a "pre-cursor" to many supposed autoimmune diseases such as Parkinson's, Lupus, MS etc.
Foundations w/CEO's exist for MANY diseases and syndrome's. They make MONEY. Drugs are always in the works for symtpoms . . . pharmaceutical companies being one of the most profitable industries we have going today; I don't think they want to let go of the golden ring.
So according to Lab257, we have a government responsible for releasing a sexually transmittable bacteria that has 100 strains in the US . . . they control the test guidelines and keep the testing so we test negative. Doctors who treat lyme have had their files confiscated and a National health crisis in on their hands . . . does the government really want this out? At what cost? Their pride? The epidemic pandemonium this knowledge would cost.
It's easy for me to do the math. We are lab rats w/o government support behind us.
Posts: 982 | From Florida | Registered: Feb 2002
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Curly, I'm now in the middle of reading Lab 257. It's difficult to read, only because it's so chilling.
I also agree with MMM -- the numbers would be shocking to people if an accurate count were ever allowed.
I keep thinking there must be a way around all this to get the truth out.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The reason we do not mention doctor names on this board is because some doctors have been disciplined or threatened by medical oversight boards for the treatment of Lyme with longterm antibiotics.
Most LLMDs that are mentioned on this board do follow a medically respected standard of treatment, based on the ILIADS guidelines. However, there are some states where doctors who believe Lyme is overdiagnosed and that you cannot treat Lyme with longterm abx have tried to get the medical license taken away from doctors who follow these guidelines.
It is a very odd situation Lyme patients find ourselves in. We need to be both patient and advocate.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
No, I haven't read up on Lab257. First I've heard of it. I can just do a search on it and find it?
I don't see why I should have to email privately. I'm trying to learn. Why in the world wouldn't people feel free to post their opinions about this?
I'll read up on Lab257. Thanks.
Posts: 1366 | From Southeast | Registered: Sep 2005
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I don't see why I should have to email privately. I'm trying to learn. Why in the world wouldn't people feel free to post their opinions about this?
Did someone say we couldn't discuss this here?? I couldn't find it.
You can try doing a search here on Lab 257. Go to the little word "search" in the upper portion fo this page. That will at least give you the author's name.
posted
My wife had Lyme and 3rd stage breast cancer (worst kind). I am a retired engineer with an interest in biochemistry...
I studied the problem and worked with a good chemo doctor and she survived. She went through terrible herxs, which the chemo doc was mystified... She survived. The nasty chemo(hair and nails fell out) stuff killed the lyme...
MY OPINION....
What is Lyme? What I have found is that lyme is not just a tick disease. Lyme is a genetic variation of Syphilis. It is spread by human contact... Most people have no problem with it... Their immune systems are strong enough to handle it. The problem arises when people have weak or damaged immune systems.. Tick bites inject bugs that trigger the lyme that is already there by overwhelming the immune system.. Other things can have the same effect. Aspertame is a nasty chemical used in diet products. This stuff has been found to damage the immune system, thus it can "trigger" various bugs that are already in a person's body.... I am sure that there are others.. Look at the additive list on bakery products. It reads like a chemical waste dump....
As I found in my cancer studies, it is all tied to the immune system. Drugs can only aid the immune system not replace it.. This is why drugs have different reactions with different people...
So,,, the base problem is feeding the immune system with the proper nutrients to make it strong. What seems to be a major cause to weak immune systems is the ingestation of man made oils. These oils have no nutritional value, thus starving and damaging the immune system.
The immune system requires natural fats (saturated) for it's strength.. The insane "low fat" (driven by greed for money) fads have promoted the damage to the immune systems many people and children...
Notice, all of the strange new "diseases" that have suddenly appeared since the unsaturated oils have been mass marketed (about 1950). I believe that AIDS is one of them... Notice the many cancers that have also appeared... This is why (my opinion) there is such a resistance to Lyme disease research. Note you have the same resistance to the Atkins diet. He accidently hit upon the fact that natural fats are very necessary for good health.... The junk oil sellers are scared that he might kill their markets.
The garbage oil sellers are making big money selling this filth... Plus big Pharma is making hugh profits selling pills to relieve the symptoms the man made oil poisons cause...
For more information on how to feed your immune system google Dr. Mary Enig..
This is a paper written by Dr. Bowen that says much more than I can. I agree with him 200%.
Just my humble opinion.. Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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lymeloco
Unregistered
posted
Curly, I do have the book, but unfortunately my concentration is very poor right now. Not to mention memory.
My second question to the doctor was after being diagnosed was, could this be bio-warfare? They said, that was discussed. Will we ever know the truth? No! Too much at stake!
Do they care about the people? Power,ego, money are more important to them!
Imagine, one drug that can take care of many ailments. Where would that leave the pharmaceutical companies?
I do believe with this becoming epidemic proportion, that it will be us, the people that will have to turn this around.
Can it happen? Will it happen? God, I hope so for all our sakes!!!
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posted
I could not read the entire book myself due to the graphic nature of the lab/animal testing. However, I got enough to understand how this disease is already epidemic proporotions and why. Along with TJ33 I see alot of connections between LD and other illnesses including cancer.
The picture is grim and yes, biological warfare is what LD is. The whole point of the book was that the US Gov. was working on this bacteria and leaked it out poisoning their own country. US!!!
Is this the only cause of biological warfare? I'm not sure anymore . . . mycoplasma is the same as Gulf War Syndrome and our Government has a patent on that bacteria. Suspions are that our own soldiers accidentally got it during innoculation, brought it home and now we're getting it too.
As for LD being an epidemic, I can hand you an article acutally titled as such! Google this: Lyme Disease the Unknown Epidemic. I share this article often to help others learn, it's excellently written.
There are 100 strains of lyme in the US and 300 worldwide (identified). Because we are now being born w/lyme, our immune systems sometimes don't ever have a fighting chance. A young woman attended our support group and said that at 2 years old she was the youngest to have "Irritable Bowel Syndrome" (IBS). Then she cried and said she realized her life have been lived as an ill person as symptoms increased and she finally got dx'd w/lyme at age 27. Today she is well and has finished college.
As for private emailing I find that sometimes my post might be long and emotional so I email . . or I think the material is personal. It helps to develop friendships that benefit you.
It sounds like you are trying hard to learn here Boomerang and if you email me I'll send you in the right direction for info.
Posts: 982 | From Florida | Registered: Feb 2002
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posted
Of course we can talk about Plum Island here! Here's a starter article and next I'll post a review.
Lab 257: The Disturbing Story of the Government's Secret Plum Island Germ Laboratory
FROM THE PUBLISHER Nestled near the Hamptons, the fashionable summer playground of America's rich and famous, and in the shadow of New York City, lies an unimposing 840-acre island unidentified on most maps. On the few on which it can be found, Plum Island is marked red or yellow, and stamped U.S. government--restricted or dangerous animal diseases. Though many people live the good life within a scant mile or two from its shores, few know the name of this pork chop-shaped island. Even fewer can say whether it is inhabited, or why it doesn't exist on the map. That's all about to change.
Lab 257: The Disturbing Story of the Government's Secret Plum Island Germ Laboratory blows the lid off the stunning true nature and checkered history of Plum Island. It shows that the seemingly bucolic island on the edge of the largest population center in the United States is a ticking biological time bomb that none of us can safely ignore.
Based on innumerable declassified government documents, scores of in-depth interviews, and access to Plum Island itself, this is an eye-opening, suspenseful account of a federal government germ laboratory gone terribly wrong. For the first time, Lab 257 takes you deep inside this secret world and presents startling revelations including virus outbreaks, biological meltdowns, infected workers who were denied assistance in diagnosis by Plum Island brass, the periodic flushing of contaminated raw sewage into area waters, and the insidious connections between Plum Island, Lyme disease, and the deadly 1999 West Nile virus outbreak.
An exploration of the complex world of microbiology, viruses, and bacteria, Lab 257 also shows how the U.S. Department of Agriculture, which ran Plum Island for the last half century, is far more than wholesome grade-A eggs and the food pyramid. The book probes what's in store for Plum Island's new owner, the Department of Homeland Security, in this age of bioterrorism. And for those interested in questions of national security and safety, it is a call to action for those concerned with protecting present and future generations from preventable biological catastrophes.
Lab 257 will change forever our current understanding of Plum Island -- a place that is, in the words of one insider, "a biological Three Mile Island."
SYNOPSIS Plum Island sits two miles off the eastern tip of New York State's Long Island and is the site of Lab 257, a U.S. government "Animal Disease Center" that has been riddled with safety problems for much of its history. This work charts a history of the germ laboratory's experimentation, examining numerous virus outbreaks and government cover-ups and investigating the links between Plum Island and outbreaks of Lyme disease and West Nile virus possibly brought to shore from Plum Island. Annotation � 2004 Book News, Inc., Portland, OR
Posts: 982 | From Florida | Registered: Feb 2002
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Long Island native and lawyer Michael Christopher Carroll takes us on a shocking journey inside the notorious Plum Island biological research facility, and the trip is not an enjoyable one. Carroll spent five years researching this highly detailed and powerful account of the secretive government installation that sits just off the coast of some of New York's prime real estate, an installation that has had its share of meltdowns, mishaps and downright scary security breaches, including two known releases of deadly viruses into the air.
Owned by the U.S. Department of Agriculture, Plum Island lies just off the coast of the North Fork of Long Island. This otherwise uninhabited, woodsy island has a long history of controversy and secrecy, as Carroll so intricately details, and just may have put the millions of residents of the Tri-State area in utter danger of exposure to fatal animal diseases, including Rift Valley fever, West Nile virus, and even anthrax, time and time again.
Carroll tells us the history of this mysterious island, from its roots as an animal disease facility to its transformation into a bio-warfare research facility, and from its rise as a top research lab to its fall as a decrepit, run-down and dangerous place with little in the way of security, even after the events of 9/11 put the island under the watch of the Department of Homeland Security.
We meet the people who made Plum Island: the scientists, researchers, workers, animal handlers, USDA reps and the citizens of the surrounding areas who never wanted the lab facility there in the first place. We see the many breaches of security and protection that often threatened to release viruses of potentially devastating force into the surrounding environs, viruses that often resulted in many workers on the island becoming ill with diseases their own personal doctors couldn't identify.
This book is a whistleblower's dream, filled with evidence of cover-ups of horrendous proportions that include suggestions that West Nile Virus and other such diseases were actually introduced to U.S. soil via Plum Island, and that the mishaps on the island could have also potentially put anthrax, mad cow, and Rift Valley fever viruses into the hands of terrorists who could easily access the island during its many administrative shake-downs.
For anyone interested in bioterrorism, this book is chilling to the bone because it proves that we have just as much to do with releasing deadly toxins and viruses, because of accidents or human error, as any foreign terrorist. For anyone interested in whether or not our country is really safer after 9/11, this book will make you sick to your stomach because the author shows time and time again, we are not safe at all.
Carroll had exclusive access to Plum Island and many of its scientists and workers, and their own words and stories are the most horrifying of all. They tell of breaches in security, carelessness, greed and even subtle sabotage that put at risk millions of Americans. Plum Island was and remains a death trap, struggling to regain the glory it held for a short time as a top research facility manned by some of the world's finest minds (including a real live Nazi brought over via the infamous Project Paperclip). But even the best minds cannot be perfect, or keep us perfectly safe, and the mistakes that were made, chronicled in this thrilling and eye-opening book in full detail, were and remain deadly.
Lab 257 is a wake-up call to people to be more aware of what goes on in their own backyards. Labs like these exist all over the country, some more visible than others. But it is also a wake-up call to our security-obsessed government that kicking Muslim musicians off of airplanes is not what we need to be safe. Shoring up our crumbling biological research labs and accounting for the hundreds of vials of deadly viruses and microbes might be a better use of our time, our taxes and our energy. Plum Island, and its history of danger to millions of citizens, is proof of that indeed.
� 2004 by Marie D. Jones for curledup.com.
Posts: 982 | From Florida | Registered: Feb 2002
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Curley, I am still slogging through the book, and you're right: some of the scenes of animal testing and treatment are graphic and awful to read.
The only reason I've kept reading is that I'm trying to learn why there is such a disconnect between the spread of this disease, its dx, treatment and the national press.
What I find terrifying is that, as you said, there are labs like this all over the country. Just last week, the following interview was posted -- transcript of a tv interview. Hard for me to hear someone talk about ticks and biomedical labs with so much nonchalance...
One of the things Lab 257 does very convincingly is destroy this whole notion of bacterial containment and safety.
I asked my LLMD for thoughts about Plum Island. Obviously, the doc said, Lyme didn't originate there, but was probably given a huge boost as a result of testing and containment gone very very wrong.
It's hard for me to even know how to feel about this. As a journalist, I usually take books like this with a grain of salt, waiting to carefully sort through the references and appendix. I think I'm too involved with this subject to have a lot of objectivity.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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I didn't realize you were a journalist. What a fun field to be in :-).
My understanding is that in the early 50's, a scientist formerly of Hitler's Regime was responsible for bringing strains of Bb to the US and I think also to work at Plum Island. Not a savory character at all . . . thru their efforts at Plum Island the bacteria was engineered to become more virulent . . . of course Bb (LD) has been around for quite some time, the Lab just popularized it so to speak. With a running jump into our system, it's had a heyday running even good intentioned doctor's in circles.
I also didn't finish it because I lent it out . . . need to get it back though.
It's funny how I read about this very early on, almost 4 years ago, and immediately it clicked for me WHY I see so much sickness around.
I see a sick granparent, the parent is ok and the grandchild has a poor immune system and can't battle the bacteria handed down.
Then certain strains are so persist and create much worse symptoms I can't imagine what others are going through. Then I have babesia which I've been told can be worse than Lyme because the symptoms just PERSIST. Some with Lyme and no babs will not feel the same way but my point is that we have so many other infections going on that we surely do not live the healthy lives of the 1950's. Everyone has something . . . I don't see dead people everywhere, I see Lyme People everywhere, they just don't know it.
Posts: 982 | From Florida | Registered: Feb 2002
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hey, Curley!
I was just reading a link someone posted about the transmission of Lyme.
The information was pretty depressing and ultimately doubled back to Plum Island. The truth is, we may never know what was unleashed from there...or when.
My hope, though, is that somehow this all breaks through and gets the attention it deserves. I'm really startled by how little mainstream press this disease has received.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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A little history always helps. I'm afraid the shock and bafflement are far from justified.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
somehow this came on twice so read below
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
quote:Originally posted by Lymetoo:
Because the tests used on a regular basis in this country are LOUSY and drs are taught to rely on them. They are not taught to clinically dx something based on "deduction" or common sense.
Only our LLMD's have the guts to do what is right!
I have to agree here most Md's don't take the time to get to the root of the problme they topically treat symptoms.. there are so many drugs on the market for this symptom and that symptom that no one takes the time anymore to find the REAL problem... too easy to write a script call "NEXT" the money this industry is pulling in is staggering..
between the md's the pharmacutical companies and the insurance who cares what causes your symptoms so long as they can live on easy street without having to WORK for thier money.. mean while most of us are going broke and our health is still failing.. relying on them doing thier job and swearing by that oath they all take .. which is beyond me how some of them can sleep at night.
I know now that I have been to several LLMD's for different members of my family, I know that there is help .. and I mean real help for this.. even if it is not a cure, there is still hope to recover most (if not all) of your ability back.. and that said I will stop blabbing away!
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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lymeloco
Unregistered
posted
Wow! My son called me yesterday from Ft.Campbell, and they just recieved their small pox vaccine. He refused the anthrax one!
I don't know what other shots they need, but he's supposed to be leaving for Iraq either tom.or sometime next week.
Is anyone getting the vaccine for this new flu coming? I'm scared! Lately there has been too many drugs that have been pulled from the shelves. Having trouble putting faith in the FDA!
I saw a special two nights ago about autism. I didn't know the government closed it's case, and refused to believe it's from mercury!
The moms on t.v. are still going to fight tooth and nail!
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Thanks for posting that history. I really enjoyed reading it and was horrified at what our government is capable of and it makes me believe even more that we have been duped with lyme disease. Sad sad sad. The only hope I keep up is that syphyllis eventually did get recognition and treatment.
Posts: 982 | From Florida | Registered: Feb 2002
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posted
I think it's best not to post the names of docs as much as we'd like to praise some and bash others. Sending private emails is fine with me.
On Plum Island. Am I mistaken or wasn't Plum Island one of the places that Chronic Wasting Disease in white-tailed deer was studied?
I no longer eat venison after learning about CWD and the disease it causes in humans, Creutzfeld-Jacobs Disease. No amount of cooking or freezing can remove deadly prions from contaminated animals. This is the reason our state no longer picks up roadkill deer; they no longer have anywhere to put the dead deer because the deadly prions can last in soils for hundreds of years. Many deer killed by cars may have already been sickly, which is why they accidentally get killed. Never touch roadkill deer!
The pervasive viewpoint is that deer don't get Lyme Disease even though they are a major host. Has this ever been studied? How many deer have had their blood sent to labs for Western Blot tests?
I believe Chronid Wasting Disease and Lyme are related. Perhaps Lyme-weakened deer are more vulnerable to the infectious disease prions of CWD? Immuno-suppressed people are most vulnerable to the human form of CWD which is CJD. Several people have died in Wisconsin from CJD. You won't hear about it much as cheeseheads are notorious for their all-important hunting rituals and the U of Wisconsin at Madison has sidestepped the issue of CWD. A United Press post of the recent Madison conference stated that CWD was not a threat to humans! An out and out lie!
What you've all related in this post does not surprise me. I haven't trusted our government since the day JFK was shot.
As far as vaccines! No Lymie should ever get a vaccination for anything!! Lyme causes a build-up of heavy metals in the brain, any further insult from mercury-containing vaccines can tip the balance of neurotoxins in the brain right over the edge. You may not recover! No tetanus shots, no fu shots, no no no!
And it isn't just the thimerosol (mercury) in vaccines that does damage. Read "Evidence of Harm" and you will understand how much vaccine-damaged children and our Lyme battle have in common. (Pat Smith spoke to a coalition of vaccine injury groups.)The whole vaccine injury compensation program is just a bail-out for the drug companies which our lovely government sponsored, thereby subsidizing shoddy vaccine standards/shoddy vaccine makers. Send private email if you'd like to discuss vaccine issues.
Posts: 422 | From Luck home | Registered: Sep 2005
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