On this past Sunday’s show, I spent the better part of the hour discussing chronic Lyme disease and the multi-layers of issues surrounding it with author of the upcoming book, Lyme Madness™, Lori Dennis, MA, RP.
Image/Lori Dennis
In addition to being a writer, Lori is a Registered Psychotherapist and the mother of an adult son who has been suffering from Chronic Lyme Disease for more than four years.
Dennis talked about the complexity of the disease and the problems encountered for sufferers to include the medical establishment, the media and the politics.
Lyme Madness™ is a memoir and a cautionary tale chronicling their journey from diagnosis to treatment to healing. Lori shares the stories of many Lyme sufferers and advocates along the way. And she explains the challenges and obstacles that they have met up with along the way.
Lyme Madness™ will be available at the end of August 2016 on Amazon
LISTEN to the podcast below:
Visit the website –www.lymemadness.ca. Be one of the first to know when Lyme Madness is ready for purchase – www.lymemadness.ca/book-launch/
Visit and follow Lori on Facebook and Linkedin
The Outbreak News This Week Radio Show, the first and only radio program dedicated to infectious disease and health news and information, airs every Sunday at 8 pm ET in the Tampa Bay area on AM 1380 The Biz and online at http://1380thebiz.com/
LISTEN to related shows:
- Lyme ‘slime’ and lead poisoning: Discussions on Outbreak News This Week
- Borrelia mayonii and Psoriasis on Outbreak News Radio
- Talk Radio: More Lyme disease, Zika in Florida
Patients with Lyme disease: most therapies just focus on the symptoms and fight the spirochetes without involving the order of the system of your body.
None of you had been screened for disturbing foci, mercury-sensitivity, aluminum-sensitivity, a dental focus or may be a disturbing scar (tonsil), which influences the order of your system and the capability of the body to respond to therapy. This means, that you will have a different outcome, because the information, (energy,medications) , they are giving you, might not get there where it is needed.
The order of the system of a mercury-sensitive person (ApoE4), what most chronic Lyme patients are, is disturbed by chronic, daily exposure with traces of mercury by ingestion, inhalation and skin penetration. The infection with Borrelia can not be correctly counteracted and fought by the disturbed immune system, and the burden of the Borrelia infection and the unknowing new daily exposure of mercury weakens the body even further.
Medicine wants to add information antibiotics, supplements etc., find pathological, biochemical changes of the disorder , but the information is not carried to the place where it is needed, because the body is in a dysautonomic state, is out of order, and even more highly weakened by those invaders (they even have electron microscopic pictures of). It is like: You want to put tiles on a wall (treat Lyme) and someone is using a sledgehammer (mercury exposure) next door. It makes no sense in adding more and stronger glue (antibiotics, supplements); you have to stop the vibration of the sledgehammer first to be able to work in a field, which then is not disturbed.
The flair ups of the disease can only be explained by the incidence and level of new mercury exposure, because the level of borrelia is not changed from one hour to the next, like the symptoms change. All patients feel better with chelation, as long as the chelator doesn’t contain traces of mercury, and if the exposure is stopped or drastically reduced. For possible sources of mercury read my notes.
Herxheimer reaction is a dysautonomic reaction to acute mercury exposure (inhalation, ingestion or transdermal), it has nothing to do with release of toxins from killed spirochetes. It is a postulate by Dr Herxheimer, not a proven fact, everyone takes for granted.
If a factory is not organized and controlled, it doesn’t work.
Bring your system back in order, so that it helps to fight the disease.
That is why I teach my patients how to test for the ingredients, they are sensitive to, in each article they like to ingest, inhale or put on their skin.
Thank you Robert for inviting Lori Dennis to speak about Chronic Lyme Disease and the struggles that millions of people are dealing with on a day to day basis. I am from St. John’s, Newfoundland where I was infected during early childhood. I have suffered a lifetime of health issues, many life threatening, My diagnosis of Chronic Lyme with Coinfection Bartonella came in 2011, 45 years after I was infected. In the years preceeding my official diagnosis I was diagnosed with Celiac with many other severe food allergies, Fibromyalgia & CFS, Sleep Apnea, Chronic Sinusitis, Diverticulitis, IBS, TMJ, Migraine, Osteoporosis and most recently Osteoarthritis. My husband and I have spent thousands on treatment and nothing has worked for me. Unfortunately we are not in a financial position to travel outside Canada for treatment and as Lori mentioned, there are very few Dr’s in Canada who are either a) knowledgeable or b) willing to risk loosing their medical license. Once I was diagnosed I too became a researcher, a scientist, became very knowledgeable in Medicine and became an advocate. I was left with no choice simply because Health Canada states that Newfoundland does not and never has had a permanent or transient tick population therefore it is impossible that I could have become infected there. I have been a resident of Ontario for 27 years but in preparation for the National Conference to develop a Federal framework for Lyme I choose to focus on correcting much of the “misinformation” on disease carrying tick populations in my home province. According to the dogma published by Health Canada and the Provincial Dept. of Health in NL, “Until recently there were no permanent tick populations in this province and the first tick was found in the early 2000’s. A rise in the ticket population has been attributed to global warming, an increase in the white-tailed deer population and the migration of song birds.” It is also stated that, until recently, ticks could not survive the trip across the Atlantic Ocean nor could they survive the harsh winters of Newfoundland and Labrador. NL is home to the largest seabird and Moose populations in North America, both of which are perfect hosts for disease carrying ticks, and during my research on the presence of ticks I found 10+ scientific article, one article dating back to 1991, where scientists studied seabirds, particularly puffins, and discovered that Ixodes uriae, the seabird tick is a potential vector along the Atlantic seaboard and 10 of the 61 I.uriae ticks from Gull Island, Newfoundland were found to be positive for B. garinii which as you perhaps know is a vector of the European strain of Lyme borreliosis. Consequently my research also produced evidence to support that these findings were indeed reported to the CDC, the IDSA and Health Canada, NL has had at the very least, a transient population of seabird ticks for decades and yet the public continue to be “misinformed!” The same science applies to the very large Moose population and how is it that ticks have been surviving the harsh climate of states such as Alaska for hundreds of years and yet, until recently, they have not been able to survive the climate of Atlantic Canada! If you would like more information about the research on Atlantic Seabirds or any of the information that I have provided then please feel free to contact me at the email provided or follow me on Twitter @michelehogg Chronic Lyme Disease is very much a political, medical and pharmaceutical nightmare and as Lori Dennis states so eloquently, It is time for the Madness to stop. Many thanks from a 50 year veteran of this dreadful and debilitating disease.
Greetings “Charles”
You are most certainly entitled to your opinion. However, I suggest read the following and consult a lawyer who specializes in libel in order to avoid costly complications.
excerpted “Questions Every Health Writer Should Ask About Lyme Disease”, by David Michael Conner 5.27.2016
“Is it more likely that tens to hundreds of thousands of individuals, many of whom were at one time physically very active, are pretending to be or imagining that they are physically ill to the point of near-, partial- or full disability, all collectively with essentially the exact same symptoms and most of whom have tested positive for Lyme disease; or is it more likely that these individuals report that they are all ill because they are all ill?
Ockham’s Razor applies: The simplest explanation is often the correct one. Ask yourself which is simpler:
1. Once-active and healthy people who claim to have fallen ill and were diagnosed with Lyme disease have persisting Lyme disease.
2. Once-active and healthy people who claim to have Lyme disease are complicit in a mass delusion, choosing to live severely limited lives and to spend great amounts of time and money pursuing medical care, diagnostic tests and treatments.
(a) That these people have some sort of antibiotic addiction and will stop at nothing to be treated with aggressive antibiotics that often have severe side-effects but which, due exclusively to placebo effect, make them feel better despite these side effects.
(b) That these people willingly sacrifice relationships with their families and friends, and frequently halt their careers or schooling, in order to support their falsified story that they feel too ill to be productive.
(c) That researchers have become complicit in this massive scam, developing highly unusual stories about a bizarre microbiological entity’s many forms, which they falsely claim can evade or modify the immune system, risking their reputations with the publication of such unprecedented findings that are condemned by a medical organization which insists 10-year-old medical practice guidelines are based on the most current and up-to-date science.
(d) That disparate, desperate advocacy groups throughout the country have formed to support this collective mythology, with people (such as the one writing this) dedicating countless hours to convey the reality of this disease through logic, reason, and abundant published, peer-reviewed, high-quality evidence, to no avail.”
It’s astonishing to listen to Ms. Dennis promote misinformation and conspiracy theories about Lyme disease. Contrary to Ms. Dennis’s “research”, Lyme disease is curable with a short course of antibiotics and is spread only by black legged ticks.
Chronic lyme disease does not exist but there is a growing cult of conspiracy theorists like Ms. Dennis and her son who live in a pseudoscientific echo chamber. They treat themselves with all manner of quackery and doctor shop until they can find a quack who will validate their delusional beliefs. It’s quite sad to see families drained of their savings while delaying treatment for any real problems.
There are now 5 studies showing long term antibiotics to be useless and dangerous for Lyme disease.. Lyme disease is also not “much like AIDS” and there is essentially no Lyme disease in Georgia! (4 confirmed Lyme cases in Georgia in 2014)
The CDC-endorsed two tier testing method is not perfect but it is approximately 100% accurate in Late Lyme, meaning if someone did have an infection for months or years (as many Lyme Truthers claim), then it would be easily detected. Only in early Lyme (when antibodies have yet to be produced) are lyme tests subject to many false negatives, but 70-80% of Lyme patients develop an EM rash, so a test would not be necessary in many cases to diagnose lyme disease. Shady lab tests that have high false positive rates are not useful.
Even more disturbingly, Ms. Dennis spreads falsehoods about the Lyme vaccine, which was safe and reasonably effective. The problem is the same conspiracy theorists who are anti-vaccine also are in these chronic lyme groups. With all the vitriol, the manufacturer decided it wasn’t worth the risk of bogus lawsuits, so they stopped selling the vaccine, which even today still has FDA approval.
There is no compelling peer reviewed scientific evidence that Chronic lyme disease exists in humans. Lyme truthers love to share petri dish studies and questionable case reports while ignoring the large number of studies that disprove their false narrative.
I do agree with Ms. Dennis on one point; please follow the money because the only ones making money from “chronic lyme” victims are the quacks who sell them lies and snake oil.
Journalists need to speak out for science and basic medical ethics because the cult that promotes Chronic Lyme is claiming new victims all the time and they are mostly unchallenged. The suffering may be real but a fake diagnosis and snake oil treatments help nobody. See the articles “Predator Doctors Take Advantage of Patients With “Chronic Lyme’ Scam” and “Antiscience and ethical concerns associated with advocacy of Lyme disease”
if your a professional or a doctor you would be the last person on earth i would seek for medical advice or help, sorry for you..
Charles, what are your credentials?
Because it is “astonishing” to listen to your “logic”.
I don’t even know where to begin with your ignorance and stupidity.
I agree with the science part and yeah, maybe if the science community did their jobs instead of cuddling with their patent and lab money then patients wouldn’t have to go spend their savings trying to get better.
I really don’t know where you got your info but you also went from saying it’s treatable with short term antibiotics to it doesn’t even exist in humans…so that’s some great consistency there.
When it comes to the testing…I totally agree that “test(s) would not be necessary in many cases to diagnose Lyme disease”. Yet most doctors won’t treat anyone unless they have the testing. Yet MS, Fibro, etc (Which Lyme has been shown to mimic.) is clinically diagnosed. Something else that makes a lot of sense for sure. I agree the testing isn’t the best too, it’s great saying the sky is blue, but it never really changes anything being a defeatist. Maybe make attempts at finding better testing? I dunno, but definitely keep putting down any attempts. That’s super healthy.
To say there’s no evidence of Lyme in humans is honestly one of the most idiotic statements I’ve ever heard. I’ll just leave it there.
I hope to God you aren’t attempting to “help” anyone with Lyme because they’d probably go blow their brains out after talking to you. (Which my family member did, since he couldn’t get help in time).
Your education is truly evidence of exactly whats wrong with your group of the medical community. Fancy words and zero logic.
Journalists would probably love to help “protect” the science community if they maybe did their jobs? If there was any kind of success instead of excuses. Stop whining, start working 🙂
Also its so easy to label things in order to feel seperate and against something. “Conspiracy” and “Cult”, are a horrible attempt at demeaning SICK PEOPLE. You see nothing wrong with that? WE’RE ALL HUMAN. There should be no “battle” here. IF YOU DID YOUR JOBS.
Please let go of your horrible impenetrable circular logic and lets all work together to get these patients feeling better. 🙂
I really wish we could work together. But the trauma and damage caused by Doctor’s to hold onto your morals and dark age ideals has angered us. I thought your first Oath was “Do no harm.” Telling someone you can’t help them and then even yelling at them to “defend” yourself against this obvious huge threat! (People in wheelchairs with mental disabilities and trauma due to depression.) isn’t harmful at all. I thought it was the “Hypocratic Oath” and not the “Hypocrite Oath.”
Amazing how someone with a grade 12 education, who has mental issues due to Lyme found all these holes in your logic. Amazing how doctors spend 100s of thousands of dollars and years of studying and learn to be robots, but never to think.
I do apologize for my honesty and straight forwardness. I know Doctor’s can never be wrong and that your science is bulletproof. So I apologize for even thinking that someone like me could understand anything that the “Gods of our Health” bless upon us…
How about you stop looking outside your “community” for problems and talk a good look in the mirror bud.
(This isn’t directed to open minded doctors who really do their research, I love you all, but we have to treat the problem and encourage the truth, like the Doctors are supposed to).
PS. I know a lot of Doctor’s don’t like to do this and would rather get their info from outdated websites but here, educate yourself
http://www.slideshare.net/LymeDiseaseConferencePresentations/presentations
thank you, great response..
Charles is a troll who apparently has nothing else to do except to give out false information about lyme disease. One wonders about the motivations of such a person.
He tells us there is no lyme in GA because of the number of reported cases, which has never been a good indicator of any disease under passive surveillance, and certainly not of lyme. To have reported cases, you must have doctors who are willing and able to recognize it, take the time to report it, and have the courage to report it. Because reporting then shows people like Charles and others who don’t want to admit to a lyme epidemic who to target. Then when they get thru with this, there will be no doctors in that state who will treat or report lyme. If you want to know how prevalent a vector borne disease is, look at the reservoirs and the vectors. That, in the case of GA and other states, will tell you more than the CDC numbers. But that information is only as good as the search, because there are many more pathogens than we know about now. Testing usually looks for known pathogens.
Right, there is no “Lyme” in Georgia, because there is no “Lyme” anywhere. It is a made up thing (“autoimmune bad knees”).
Post sepsis from relapsing fever?
Everywhere.
http://www.actionlyme.org
The obvious problem with Lyme disease is that the official system-sponsored story is flawed and on many levels, totally false. Thank you, Charles, for outlining precisely what the lies surrounding this insidious disease are and why hearing the truth from educated people like Ms. Dennis is so necessary.
The two tier antibody test for burgdorferi is quite problematic, and this is agreed upon by many of the experts of borrelia. This is why there are many entities who are trying to develop better tests, this current antibody testing is 1950s technology and is missing a lot of cases. It is frankly unacceptable with today’s technology and no how.
Also, we are not limited to burgdorferi in this country, we have various species and strains that we are not testing for.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132383/
In regards to Lymerix you are slightly misinformed. There were various issues with the vaccine, and quite a bit of controversy. Certain individuals with specific HLA DR types may have been susceptible to adverse reactions. I recommend reading science journalist Pam Weintraub’s article on lymerix: http://www.whale.to/m/lymerix8.html
Do you categorically deny the possibility of borrelia persistence after a standard course of antibiotics? if so, I think you should look up the animal models, namely Straubinger’s dog models and Hodzic’s mouse models which show persistence of the organism and viability after standard antibiotic courses. Secondly, there is no way to prove that borrelia has been eradicated, we have no diagnostics that can prove this point. To make a blanket claim that CLD does not exist is a statement built upon faith. Thirdly, there have been many documented cases and studies showing that patients who’ve had their course of antibiotics but still have continuing symptoms are having positive pcr of synovial or csf, sometimes months to years after treatment. There have also been many documented cases of culture positives as well.
What are the possible mechanisms of persistence? studies out of Northeastern suggest that there are dormant persister cells with borrelia that evade antibiotics and then reemerge once the threat has disappeared. Eva Sapie has recently done a study showing that borrelia forms biofilms in vivo which could be another mechanism by which borrelia survives antibiotic exposure.
Right because OspA alone, injected by syringe caused the same sepstic shock outcome, with the reactivated viruses of all kinds.
Who says so? Even Gary Wormser and the NIH:
http://www.actionlyme.org
Chuck, I am shocked to see that you called your buddy Allen Steere a liar. You said there is no chronic lyme disease. Could it be that you have not seen my lyme documentary Lyme Disease Exposed on you tube? In the video you will see a portion of the 3,000 FOIA email from the CDC, one written by Steere saying that there is a form of Chronic lyme in patients who were not treated early. You will also see a paper from the CDC stating that the western Blot will only detect 14% of positive cases even bypassing the Elisa. If 86% of the patients that have lyme test neg. these people will not be treated early and as Steere states will become chronic lyme patients. So according to Steere, the god father of lyme disease, Chronic lyme does exist. These emails were part of the 3,000 FOIA emails that were censored and took 5 years but still had much information. That kills your statement about the CDC western blot being almost 100% accurate and should answer your statement about a short term cure as well..
As far as long term treatment not being effective, You fail to say that after the long term treatment stopped the patients relapsed proving that ABX treatment was helpful. Even Steere published saying even after multiple treatments with ABX treatment over one third of the patients relapsed, patient # 12 died and during autopsy cultured borrelia spirochetes from heart and brain. ( Persistent Infection )
Now the EM rash, you say 70 to 80 % get the EM rash. This is because the test for lyme disease is so poor the only way the CDC can detect a lyme patient is with a rash because 90% will test Neg.
The Lyme Vaccine was pulled because to many people became sick after the first or second injection. In fact, the Lyme vaccine trials were conducted using unhealthy people with hip replacements, MS CFS Lupus and other illnesses. These ill people were selected because of there health so when people became sick ill from the shots the study showed that they were not healthy to begin with therefore it was hard to prove what symptoms were caused by the Lyme Vaccine..This is not the proper way to run a vaccine trial and could only be done in America.
Feder from UCONN did a Lyme vaccine trial in another country that did not have that strain of borrelia, he said many of the children had no reaction to the injections. Because the borrelia strain was not in that country the vaccine trial was done to see what illnesses it would cause and the pub med paper never talked about if the vaccine prevented the lyme infection because that is not why the trail was run.
Chuck, you say also the only the lyme groups are concerned about the vaccines. The Movie vaxxed has nothing to do with lyme disease and was banned from the film screening in Hollywood.
People all around the world are starting to see the CDC for what it is. Don’t forget about the Tuskegee experiment the CDC ran for 40 years on the Black Tuskegee soldiers. When the men died the study was complete and at this time the brains could be removed and cut up to see what damage the Borrelai spirochetes did.. 399 men in one group. It’s in my movie .The CDC = Center for deceit and corruption and somehow your hand is in the cookie jar. So people are making money on this disease!!!!. You were correct about people making money money part.
Some time around 2007 you contacted me when you used the Name Chuck P Adams, could it be ( Certified public accountant ) about the $20,000 reward that I posted stating that I would pay any MD $20,000 if they could prove that the Lyme disease Borrelia infection was killed off with 6 weeks of IV treatment. As you remember you backed off and went away when you were challenged.
I pulled the reward sometime after my interview with Tru TV.
Ed, please post on this site any papers that you have showing that lyme is cured with any number of months of ABX treatment.
It is because of people like you that I came back into the lyme battle and produced my lyme documentary Lyme disease exposed on you tube and I did it with my own money, not taking money from sick and suffering people. I thank this radio show for running this. This is big when anyone in the news media will stand up to the CDC, FDA and allow the truth to come out. Again Thanks for doing this.
Also Eddy,Back off on Lori Dennis, I have had several conversations with her and she is a kind and caring person who see’s corruption and wants to change it. She also knows what she is talking about and speaks the truth unlike your self . Below is the link to my movie.
https://www.youtube.com/watch?v=ow53uy1qElI
Quick Ed get back under your rock I think the sun is coming out.
Your opinions are about as popular as backed beans on a bus trip!
Randy Sykes
http://www.cbsnews.com/news/the-man-with-no-work/ Here is a link from Eddy, I mean Charles and how he got bound up for harassment of the Lyme Disease Foundation
Charles, it’s quite obvious you appear to be the one who has fallen victim to some sort of conspiracy theory. With all due respects Sir, you simply do not know what you are talking about and your wholesale condemnation of chronically ill individuals is not only dehumanizing, but abusive. Your ignorance and arrogance disqualifies you as a credible source of viable information on the subject. I suggest you conduct your further research with a clinical mindset, not a subjective declaration that you are the end of this subject of chronic Lyme disease. There are too many errors in your erroneous and highly presumptive statements to be addressed in one post. But, it’s quite obvious the source of your information appears to be highly anecdotal and internet based on subjective, inconclusive conjectures. This subject demands a more sober, intelligent approach to truth than you appear to possess, neither of which you have displayed in your post. Besides embarrassing yourself further, kindly do yourself a favor and conduct a more clear-headed, logical and clinical approach to your pursuit of knowledge on this subject please.
Chronic Lyme is as real as a heart attack and i know so many doctors that got Lyme themselves and are singing a different tune now.. There is no Lyme test that is worth the paper it is written and everybody knows anything about Lyme knows it is a clinical diagnosis. Lab test is unreliable and flawed and should not be used to tell a patient they do not have Lyme.
I did years of abx and all my 40 plus symptoms are gone now thanks to a real doctor with guts to help the patient and not hide behind the idiot liars like a coward.. just because you don’t agree with the over 700 peer reviewed studies does not mean Chronic Lyme does not exist so you should get over yourself and move on, let the real doctors do the job if your not interested..
Greetings “Charles”
You are most certainly entitled to your opinion. However, I suggest you read the following. I also recommend you consult a lawyer who specializes in libel so that your commentary does not result in unexpected costs and legal complications.
written by David Michael Conner And excerpted from his article Questions Every Health Writer Should Ask About Lyme Disease 5.27.2016
“Is it more likely that tens to hundreds of thousands of individuals, many of whom were at one time physically very active, are pretending to be or imagining that they are physically ill to the point of near-, partial- or full disability, all collectively with essentially the exact same symptoms and most of whom have tested positive for Lyme disease; or is it more likely that these individuals report that they are all ill because they are all ill?
Ockham’s Razor applies: The simplest explanation is often the correct one. Ask yourself which is simpler:
1. Once-active and healthy people who claim to have fallen ill and were diagnosed with Lyme disease have persisting Lyme disease.
2. Once-active and healthy people who claim to have Lyme disease are complicit in a mass delusion, choosing to live severely limited lives and to spend great amounts of time and money pursuing medical care, diagnostic tests and treatments.
(a) That these people have some sort of antibiotic addiction and will stop at nothing to be treated with aggressive antibiotics that often have severe side-effects but which, due exclusively to placebo effect, make them feel better despite these side effects.
(b) That these people willingly sacrifice relationships with their families and friends, and frequently halt their careers or schooling, in order to support their falsified story that they feel too ill to be productive.
(c) That researchers have become complicit in this massive scam, developing highly unusual stories about a bizarre microbiological entity’s many forms, which they falsely claim can evade or modify the immune system, risking their reputations with the publication of such unprecedented findings that are condemned by a medical organization which insists 10-year-old medical practice guidelines are based on the most current and up-to-date science.
(d) That disparate, desperate advocacy groups throughout the country have formed to support this collective mythology, with people (such as the one writing this) dedicating countless hours to convey the reality of this disease through logic, reason, and abundant published, peer-reviewed, high-quality evidence, to no avail.”
—— ————————————————
The response is from Jenna Luché-Thayer’s expertise includes government transparency and accountability and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries. She has extensive experience in congressional relations, testimony and legislation. She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications. Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund.
I would like to make a couple of comments with regard to a few statements made by others.
First of all, Lyme is only easy to diagnose and treat IF you find the tick engorged on you and/or you are one of the lucky ones that end up with the stereotypical bull’s eye rash! Then, and only then, will most – not even all at this point – Doctors will diagnose and treat. To compound matters even more, is that more and more ticks are carrying things along with, or instead of, Lyme. MOST Doctors have very little knowledge of the possible co-infections that ticks can carry.
Health Canada, in an Adverse Reaction Newsletter back in October of 2012, advised that Lyme should be a clinical diagnosis and that serologic test results should not be the primary basis for making diagnostic or treatment decisions as they have sensitivity and specificity limitations. This newsletter went on to say that “In general, false-negative results have been attributed to (a) a slow antibody response early in the course of the disease, (b) genetic diversity of B. burgdorferi and (c) treatment with antibiotics.” I read this to say that tests can provide false-negatives whenever they are given, not just in the beginning – http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php#a1.
The CDC has broken out their Signs and Symptoms of Untreated Lyme Disease to include Early Signs and Symptoms (3 to 30 days after tick bite) and Later Signs and Symptoms (days to months after tick bite). Lyme, even alone, can be debilitating if not treated early! – http://www.cdc.gov/lyme/signs_symptoms/index.html.
Rather than bicker about what people are calling their “chronic” illness, how about giving some thought about why they call it that. First of all, the majority of those that say they have “Chronic” Lyme do so because they have been living for months, but mostly years, with a steadily progressing illness, with a multitude of symptoms, that affect any number, if not all, systems and they have never received a diagnosis from “mainstream” Doctors that adequately address all the symptoms. Those that say they have “Chronic” Lyme may have received some treatment but would now fit in what the CDC calls “Post-Treatment Lyme Syndrome”. Even the CDC/IDSA don’t know why some people stay sick. Do they have co-infections? Where they not treated adequately? They don’t know but many can no longer work or be a full member of society. What to call it is the least of my worries. Why we are calling it that, is more my concern! You have thousands of chronically ill people. WHY? If there is someone else wrong, why can’t mainstream Doctors find out what it is? I have seen it time and time again that once a person has a “Lyme” label, many Doctors will have nothing more to do with them. WHY? Chronic Lyme? Late Lyme? Post Treatment Lyme Syndrome? Something else entirely? All these people have not making up their symptoms!
I could go on and on and on but I won’t! Lyme and tick borne diseases require more research! Doctors need more education about Lyme and tick borne diseases and should be able to clinically diagnose ALL stages, as well as any co-infections that have been found in their particular area (although that can change fairly quickly due to migratory bird patterns)! Lyme and tick borne diseases are not rare! They are not hard to get! They are generally not easy to diagnose! They are generally not easy to treat! There are undoubtably thousands of people in North America that are dealing with tick borne diseases and have NO IDEA!
To continue to suggest that Lyme and tick borne diseases are not a big issue is almost criminal! People need to be taking this issue seriously and taking the proper precautions.
We should not be hearing about numerous NEW cases on a regular basis! We have so many because of the likes of certain individuals that continue to say they are rare, hard to get and easy to treat!
Do some research! Read things other than those produced by the CDC/IDSA! Ask questions! There is a lot of conflicting information out there! Why?
Thank you Outbreak News Today for continuing to cover the issue! Keep it coming!
I thoroughly enjoyed this broadcast on Lyme Disease with Lori Dennis. She was accurate and reasoned out the politics of Chronic Lyme Disease very well. There was not one point that she did not either clarify as personal experience or reference by saying it was based on an interview with a doctor, lawyer etc or on her own research with Peer Reviewed literature (which she mentioned twice she would send in). I am fine with objectors as long as they themselves go through the rigorous process of meeting the above criteria. Unfortunately the objector on this page did not do that in my opinion. His comments sound exactly like IDSA rhetoric to me. I would absolutely love it if you had Lori Dennis on your show again. Probably the best Lyme Disease interview I have ever heard (and I’ve hear a lot!). Thank you for this!!
Lyme Disease, the hidden menace coming out of the darkness only recently.
For years I have struggled with joint pain. Spent thousands of dollars on various MRI’s and Xrays, to determine why I would go to sleep relatively healthy and wake up in the middle of the night with a swollen joint in excruciating pain. So much so that I could not walk without crutches.
I had two friends that kept telling me I had Lyme disease, so I went to “quest diagnostics” got tested and the results came back negative. Twice in 3 years. My friends continued to insist. They tried to explain to me that the testing procedures are not 100%. And finally 5 years later and over 10 doctors later (none of which had an answer for my ailments), I went to an LLMD. He uses a different technique (and explained the majority of testing labs do perform a full panel test or do they test for co-infections), he was able to find 4 infections. At this point I looked (according to friends and family) and felt like I was dying. I was willing to try anything. This doctor has been studying Lyme for over 30 years. His approach was a combination of ABX and supplements. After over a year of treatment I got my life back. And while not cured or even @ 100% I was able to function again. and no longer spent 2-3 weeks of every month bedridden in pain. But to state that they are useless is based on tests that I have researched that are at best flawed. Usually long term in many of those test (which were not referenced above so I can’t comment specifically) is 5-9 weeks depending on the test and only use Doxy-cyclene. Given that many LLMD’s use a variety of abx in conjunction with supplements this is hardly a apples vs. apples comparison. But again the scientific community in todays world does not have a strong need to follow true testing using the scientific method.
This is further evidenced by the CDC’s continued stance that Marijuana is not a medicinal herb. However while they state this they have no science to back that claim up. Nor do they allow testing even though Human and Health Services has held a patent on MMJ since 2001 patent#US6630507
https://www.google.com/patents/US6630507
It has been suggested in the comments that a short round of abx will cure Lyme if found immediately. Ironically the person that states this also claims that many “lyme truthers” do not use peer-reviewed science to base their claims. FYI there is no peer reviewed lab tests or studies that support this claim either. So you can’t have it both ways. Either you look at teh facts and recognize the BS, or you continue the dogma you want to perpetuate which apparently is all he is willing to do.
I believe after doing years of research myself that OSP Lori Dennis is on point. Few of the decisions outlined by the IDSA are based on hard peer-reviewed science. Due in large part to nepotism within the IDSA (referred to as conflict of interest in the below article) and a failure to allow any competing evidence to be presented (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/).
In Short the comment above that attempts to discredit Mrs. Dennis is nothing more than a person submitting emotional retaliation to something they either fail to truly understand or they are not true scientists but a growing type of doctor in today’s culture that does not know how to utilize the scientific method and fails to recognize any observation that falls outside of the theoretical box they are confined in that was created by the IDSA
Jenna your response is remarkable!
Clearly we can see what the truth is just from these comments. Amazing.
According to the Medical and Scientific research that has been Peer Reviewed and Published in Medical Journals, there are over 400 Auto Immune System Diseases, Syndromes and Idiopathic Diseases that are directly related to Lyme Disease! Lyme Disease has had extensive medical research for over 3 decades with over 5,000 studies performed. However, most doctors are not reading the research studies nor are they connecting the definitive research that proves the truth. Furthermore, their hands are tied by their governing body that keeps them in the box for treatments that do not work. Deer ticks are just one of the carriers of Lyme Disease. Mosquitoes, gnats, mites, flies, other biting insects, spiders, lice, bed bugs, sex, blood transfusions, biological fluids, gestation, lactation, birds, rodents, wild and domestic animals, raw milk, and some chemical exposure are other means of transmission and that is in the medical literature too. There are millions of people worldwide with late stage LD and thousands of new cases daily. So when anyone tells you that antibiotics solve late stage LD, ask them,”So why are so many people still sick with LD because most of them have been on them for many years?”
State medical directors admit that the medical profession understands that antibiotics (ABX) do not work on late stage Lyme disease but ABX are the only thing they know and are allowed to give people. That is crazy but true! So let’s say your car is running out of gas as you pull into the gas station. You ask the attendant to fill it up. Then he says to you, “I am sorry we are out of gas but we can fill your gas tank with water. We know it won’t work and we know it will hurt your engine but it is the only thing we can offer you.” Would you do it? Of course not! That is exactly the same thing with antibiotics and late stage Lyme disease. I am sure you obviously recognize, thousands of people stay sick even though they have been treated for many years with ABX and other forms of medications and herbal formulas. The longer they have had LD, the longer it takes to eliminate it. That is because treating with ABX does not work on late stage LD, because most people have more than one of the 300+ different co-infections and because the mature spirochetes develop a hard outside shell (bio-film) that the ABX and other meds cannot penetrate. That is why so many people have relapses or a triggering event that makes them extremely sick again. Most doctors think they got re-infected. That is mostly not true! They could get re-infected, however, most of the time they never completely eliminated the mature spirochetes so they proliferate with each 28 day life cycle period until the person is totally sick again. People with LD will have 5-7 really devastatingly sick days and then feel somewhat better for 21-23 days. That is because the eggs are dormant for 21 days and then they hatch and are transported throughout the body via the blood stream, burrowing in and infecting other organs and body parts. As you already realize, most people who have had LD or who now presently have LD will tell you the ABX are helping in the treatments. That is actually true! ABX are very effective on the first two stages of LD. However, it is rare when someone says they don’t have late stage LD anymore or that it has been eliminated using ABX. There is a big difference between treating late stage LD, being in remission and eliminating it so you are completely well and symptom free! Treating with ABX for 5, 10, 20 or 30 years is not the solution.
According to the CDC since 1994, testing for LD is not to be used for diagnosing. Tests are for reporting purposes to the CDC because they are so inaccurate in late stage LD. According to their own governing bodies and extensive research, a person’s symptoms are what doctors should be diagnosing people on. So if someone has 2 or more symptoms of the 300 + symptoms of LD, the person should be treated with at least 8 weeks of antibiotics. If they have had LD more than 90 days which is considered late stage, antibiotics and other medications will not eliminate the mature spirochetes. This has been proved for many years in the medical research. That is why people are sick for so long or never fully recover. They need to use alternatives.
Ref: 2nd National Conference on Serologic Diagnosis of Lyme Disease, CDC/ASTPHLD, 1994 Centers for Disease Control (CDC) requires a positive test for surveillance purposes in reporting cases of Lyme disease, the CDC itself clearly states that its surveillance criteria should not be used for clinical diagnosis, but rather, Lyme should be diagnosed based on a doctor’s evaluation of symptoms with the tests providing support.
People can be carriers of LD and asymptomatic for many years and then they have a “trigger event” which could be the flu, a vaccine, dental work, a surgery, childbirth, a cut, a stressful situation, a cut, a car accident, etc., which makes them symptomatic and sometimes in a crisis situation very rapidly. That is because the immune system goes to that area of the body to help heal, reduce inflammation and prevent infection. This allows the LD that was dormant to explode in the body because it no longer has the immune system keeping it in check. Unfortunately, this is very common.
Lyme disease (LD) is extremely complicated and there are over 300 coinfections that can affect all organs of the body and cause severe damage. At this present time, there is no medical literature that proves that that late stage LD can be totally eliminated from the DNA. That is why we should never use the “cure” word.
Remember, if it looks like a duck, quacks like a duck and swims like a duck you can be certain it is NOT an eagle disguised as a duck, it is a duck!
Charles — I have five simple questions in response to your defamatory comments about me. 1) Who are you? 2) What are your credentials? 3) Who is paying you to spew such nonsense? 4) Have you or a loved one ever experienced this debilitating, life altering chronic illness that millions are experiencing worldwide? 5) Why do you seemingly have little to no regard for human suffering?
Hi Lori, Ed is taking a break so I will answer your above questions.
# 1 You asked him, who are you ? Please see link below
http://www.cbsnews.com/news/the-man-with-no-work/
He has made it his life work to make people suffer.
# 2 You ask what are his credentials ?
Ed has worked for the NIH and and with the CDC and is involved in the cover up and dis information efforts to down play lyme disease. He has been involved in helping lyme people suffer for many years.
As Durland Fish ( Yale lyme disease cover up ) wrote in a FOIA email in my movie and I quote him, We can not win this battle on a scientific front. End of story. We have the proof and they have the Media and the federal Gov. behind them.
# 3 Who is paying you to spew such nonsense ?
I believe Ed is retired now ?
Tons of money is being made on Vaccines in fact they made $ 41 million on the lyme vaccine in about two years before it was pulled and Steere even said that they needed to modify the OSPA in the vaccine because it caused the same illness as lyme disease but the vaccine was sold anyway. Hey they made 41million.See Kathleen Dickson’s post on this server on the vaccine.
# 4 you ask , have you or a loved one ever experienced how debilitating chronic lyme disease is ?
Lori, the first thing wrong with this question is asking if he had a loved one who dealt with lyme disease. To answer this as best as I can look up the word Satan and love. This is the best way to explain it.
In fact if Ed looked into a mirror he would not be able to see himself.
# 5 Why do you seemingly have no regard for human suffering.
Again Lori, please look up the word Satan!!!!
Many of us who tell the truth about Lyme Disease catch Hell but the Hartford Lyme Disease Foundation had their house broken into, their well poisoned and even received death threats all with little to no support from the lyme patients. They were making progress and Gov. people were starting to listen before they shut down the Foundation.
In the end of my movie I say the only benefit to having Lyme Disease is that death is not such a disappointment . I know where all the body’s are buried. I hope this helps answer your questions.
Randy Sykes
You said:
There is currently no real money in Lyme treatment for Big Pharma.
Admitting to the fact that millions are suffering could ultimately bankrupt the system.
There’s no way both of these statements could be true. If there was a disease having profound effects on millions of people, that would be a prime target for Big Pharma. We’re talking about opportunities for blockbuster drugs — billions upon billions of dollars of profit at a time when Big Pharma is finding fewer and fewer of these opportunities. There’s no way Big Pharma would ignore that, much less suppress it. Your argument is not at all logical. How do you explain that?
Discover magazine recently had an article on psychopaths and how they can be identified by brain scans. I know of some people who should get this scan.
Thanks Lori for doing this. One of these days the numbers of stricken people will be so great, it will create a storm that will wash away the foundations of the lie palace that has been constructed for lyme disease by our government authorities.