The amount of expertise of hundred of thousands thinking, speaking observing, reading and sharing guinea-pigs, us,for more than 40 years is astounding. Some of us are Drs, many health professionals, a large number are scientists a large number have college education. Just to oppose the medical system one have to be exceptionally discerning and capable. This direct guinea-pig expertise shared is I think thousand times more relevant than the venal organizations pseudo scientific denying based on one third of direct evidence, one third of secondary observations and on third of biased expert opinions. This intelligent guinea-pig expertise is also documented by thousands of scientific studies. Who and in pursuing what objective will organize this big data in a powerful information?
British Columbia naturopaths like Dr. Chan and others literally SAVED MY LIFE from Lyme Disease. I appreciate the awareness raising you are doing about Lyme, but the way you talk about naturopaths really pisses me off! I was brought back from being completely disabled, both physically and mentally, to being an independent, mostly functional human being again. I am still in recovery but my life is no longer in danger. I had NO help from medical doctors. In fact over the past 25 years they contributed to my illness by misdiagnosing me, treating me with the wrong medications, dismissing me as mentally ill/hypochondriac when my issues had physiological causes, refusing care and abusing me, biasing specialists against me before I even got to see them, and even lying about significant test results. The only reason I got well is because I walked away from my medical doctors and went into the care of Naturopathic doctors. Naturopathic doctors base their treatments on science and take very good care of their patients, especially Lyme literate naturopaths who are constantly under the microscope and tons of pressure to get it right. So stop knocking their good work and instead start collaborating. They have a lot of information to offer and could really benefit the Canadian research process.
Hi Caro S,
Unfortunately, there really is no clinically useful scientific evidence supporting the safety and efficacy of Lyme disease treatment approaches other than antibiotics. This doesn’t discount the importance of someone who takes the time to address a patient’s experience of their illness–people with a complex disease experience need this. And I completely agree that we need well-researched safe and effective treatment approaches in addition to antibiotics in some patients. Naturopaths need to do peer-reviewed research and well-controlled clinical trials to provide evidence for the safety and efficacy of the Lyme disease treatments they market. And absolutely, if research and trial results support the safety and efficacy of these treatments, then it is completely legitimate to market them as treatments, because marketing claims will be supported by evidence. If a practitioner provides support that is safe, & that patients can afford and feel helps them, then there’s no harm. However, I’m concerned about any professional who would market treatments as proven or effective when there is actually no evidence to support this–this is deceptive. If a practitioner doesn’t make claims to be able to treat Lyme disease, but does offer to try approaches that a patient may find helpful, then there is no concern about this. It’s explicit claims to be able to treat the disease that are problematic. Caro S, if you or others have suggestions about research we could focus on, please let me know. We need specific, constructive suggestions from you and others about how our proposed research could help people who currently have Lyme disease and Canadians at risk of contracting this disease.
Unfortunately, I was one of those that slipped through undiagnosed and untreated for many years while symptoms grew in magnitude. I never saw a rash, or an attached tick for that matter. However, by the time I was clinically diagnosed in 2011 I had over 40 symptoms and all systems were affected. My Canadian Lyme Literate MD treated me until he closed his practice in early 2013 due to stress brought on by constant intervention by the College of Physicians and Surgeons for his treatment protocol. During my treatment my symptoms subsided considerably such that my GP said she saw the improvement but could not continue my LLMD’s treatment because my ELISA had been negative.
Since 2013 I have sought the help of several complementary and alternative health care practitioners in order to be able to live a fairly reasonable life, albeit with symptoms that remain and come and go at will. My husband and two children have multiple symptoms that fit into a possible Lyme diagnosis but their ELISA’s have come back negative as well. They all have come to just live with their symptoms. This should not be happening in Canada, or anywhere!
My LLMD had diagnosed me with Bartonella, first and foremost. Lyme, and possibly Babesiosis, was secondary. In 2017, research by Dalhousie University in Nova Scotia found that 70 percent of ticks tested (both blacklegged and dog) carried Bartonella. Approx. 30% of the ticks also carried Rickettsia. To date, this information is not available on any website that I have reviewed. Why?
There is also research to suggest that more and more ticks are carrying more than one disease/pathogen. How would a Lyme vaccine work if other things were transmitted? Is a vaccine even feasible?
I am presently reading the book “Conquering Lyme Disease” by Drs. Fallon and Sotsky of the Columbia University Medical Center. ALL Doctors and researchers should read this book. Chapter 14 is entitled “The Good News Emerging From Lyme Disease Research”. The following are the section titles:
“Recognition that Borrelia Persist”
“Repeated Antibiotics Can Help”
“Persister Borrelia Burgdorferi Spirochetes May Necessitate Different Treatment Approaches”
“Recognition that Persistent Symptoms After Treatment for Lyme Disease Have Been Associated with Objective Biologic Findings”
“Recognition that Lyme Disease Infection May Lead to Abnormally Active Neural Pathways”
“‘Omics Research’ Can Help Improve Diagnostics and Clarify Pathophysiology”
“Idenfication of a New Tick-Borne Infection Causing Symptoms Similar to Lyme Disease”
“New Prevention Strategies”
This book has almost 30 pages of References and should be included as necessary reading. As more and more books are being written about Lyme and tick borne diseases, the pieces of the puzzle are finally being connected. However, unless you take the time to actually sit down and read these books, you are left unaware. In many cases, Lyme patients have spent the time to read new and up-to-date research, books, articles, etc., etc., etc., and their knowledge should not be taken lightly. Just read some of the comments above and you will realize that many of those impacted by Lyme and tick borne diseases are well read and very knowledgeable. Many are also Nurses, Doctors, Naturopaths, Lawyers, Teachers, Biologists, Politicians, and so much more. Their knowledge should be fully utilized.
On a final note, I also read Dr. Neil Spector’s book “Gone in a Heartbeat”. This is another book that ALL in the medical field should read. He provides invaluable insight into both sides of the issue. That of a patient and that of a Doctor. I am also looking forward to Mary Beth Pfeiffer’s book “Lyme: The First Epidemic of Climate Change” which comes out in April.
As this issue is basically worldwide, we should all be working together in an effort to reduce the number of new cases, and to ensure that a diagnosis and adequate treatment can be undertaken quickly. As well, those that are already suffering need compassion and help.
Lyme is not rare, hard to get and easy to treat. Lyme is also not just a rash and flu-like symptoms. Finally, Lyme is not the only thing we need to worry about so a change in name and dialogue is now necessary.
Thanks for this comment. I do want to get back to you, but won’t have time for a couple of days due to a couple of deadlines. I’m not ignoring you or anyone else in the comments section…..I just need time to respond fully and answer any questions you or anyone else has.
Sorry for the delayed response. Your story is really heartbreaking. Do you have any suggestions about the kinds of research that might be most useful for people who have conventionally diagnosed Lyme disease, as well as those who are seronegative?
Excellent article I never thought of Lyme as the consequence of global warming but of course.
I am working on a project that is related to global warming and would like to brief you on it. I have info to email you.
First of all when Dr. Moriarity is calling for you to be a patient rep on her research agenda I recommend you say No! Her work speaks volumes and all it says is “status quo” she does not understand what its like to be in patients shoes seeing that she has never clinically treated lyme so she is not in a good position to understand the complexities of the situation (or to even look for them for that matter). I see she is pushing vaccines and anyone who pushes a vaccine for a disease that has OspA and antigenic variation clearly does not understand either how vaccines work or how the lyme bacteria works. The outer surface protein (OspA)of lyme Bb varies itself once the immune system has produced antibodies to it in order to evade immune detection and so it goes on and on once the antibodies have build up again it will change its outer surface protein and while changing it drops blebs (lipoproteins) which are toxic to the immune system and cause immune suppression. What do vaccines do? They create antibodies to a specific antigen so that your body is primed to attack the specific infection if and when you get it. Can you not see that with a disease like lyme that has antigenic variation that adding in antibodies would not be a good thing? Its just going to cause more immune suppression and damage to the immune system. For her to call Dr Chan’s work bumpkis or whatever she said is the epitome of irony as he is one of the only brave dr’s in Canada willing to go out on a limb for the lyme community and I have tried the conventional allopathic route (many, many time), now that is the real bumpkis as you will die running in circles like a gerbil on a wheel and get absolutely nowhere but more upset and sick. She likes to minimize the amount of people effected and to minimize the symptoms and duration of the disease. She is a stickler for guidelines which with a disease that presents so differently and generally as lyme does guidelines should be taken with a big grain of salt – she stands for the old guard and we need a new one so please when they call for your support say No to Queens and Dr, Moriarity.
First of all Dr Moriarity is not for the Lyme patient she is for the status quo -period so when her and her Queens cronies are calling around for your vote as to who gets the 4 million just say NO! Do you want the status quo/ old guard or do you want sick people to get the help they need? If you want change you must avoid Dr. Moriarity and Queens research at all costs as they will continue the medical negligence, patient shaming mocking attitude that currently prevails by solidifying nonsense research by doing more nonsense research (If you know what you are looking to find its not that hard to find it). The only thing I have to say about Dr Moriarity is that its very clear she doesn’t see or treat lyme patients because if she did she would know its a horrific, chronic disease that is very common and has been around for ages (not some new found bacteria that doctors are up against – come on!! ) and and this is what happens when you cherry pick evidence it creates a false picture and that is what people like her have been doing all along creating a lie. My only consolation is that she won’t get away with this forever because people with twisted motives that allow people to suffer and die can’t wriggle off the hook quite so easily in the end.
Tara has the lie in Lyme disease become so big that they have convinced you also that chronic Lyme does not exist. It’s post Lyme disease syndrome. We wish as patients this was all true. We would have no reason then to pursue for change. We would then just get back to our lives. There would be no reason for lobbying the government for money and medical system to fix the wrongs. No reason for supports groups in each province. No need for awareness and advocacy. No one wants to be left ill. No one wants to be in treatment. Perhaps one might think about this and do what is right for the patient. Use the money correctly as status quo does not work. We are the victims in this. Perhaps ask a patient they can tell you. How can we vaccinate something we can’t even test properly. Just my Sunday thought. Perhaps your facts are misconstrued. Just saying as a patient of 6years in this system or lack of.
How is your research going to help those suffering with the post treatment, or ongoing treatment of Lyme and it’s co-infections?
It seems that unless one has Diabetes or is obese, your research is is not going to help the majority of those suffering.
Also, you still have not addressed the questions about congenital Lyme.
Dr. Moriarty gives us an example of how easily academic researchers that study Lyme but don’t see or treat patients have been able to derail the issue for the past 30-years. Several major health insurers decided in the 1990s that treating Lyme was too expensive and bad for their bottom lines, so they paid International Disease Society of America [IDSA]-affiliated doctors – who were researching, not treating, Lyme to establish arbitrary guidelines in 2000 that said the disease could be treated with 28 days of antibiotics.
Currently 28 Texans are suing 6 insurance companies and 7 academics researchers belonging to the IDSA for colluding to redefine Lyme as a simple nuisance disease and using the tests and new definitions they developed along with treatment guidelines to deny or limit treatment and benefits. https://www.courthousenews.com/insurers-accused-conspiring-deny-lyme-disease-coverage/.
The IDSA’s thirty-year fixation on the acute stage of Lyme (the rash) after early
treatment conveniently avoids the late stage manifestations of Lyme, which are
crippling to the patient and unresponsive to short-term antibiotic treatment. We are
dealing with a serious life-threatening/ life-altering infection misclassified as a
simple nuisance disease with consequences that belong to the same health threat
category as HIV/ AIDS, Zika, cancer etc. The IDSA/ PHAC/ AMMI inaccurate
conceptualization of disease has influenced the nation’s perceptions and response.
Post-treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure.
The patient voice will play no part in Dr. Moriarty’s research group’s decisions or findings as they try to maintain the status quo. There have been no advancements in the past 30 years and the status quo hasn’t done us any good. Politicians continue to cede responsibility and money to the same groups like Dr. Moriarty’s and the Association of Medical Microbiologists and Infectious Disease Canada [AMMI] that are responsible for the problem. Opinions and not science are driving Lyme borreliosis policy in Canada. Like the tobacco and energy industries doubt is the product that this group is giving us. Syphilis is a legitimate disease and serves as an historic model for Lyme so why is Lyme treated differently?
Canadians spoke loudly and clearly in Ottawa that we want a made-in Canada solution and we do not want our health care system run by the U.S. Insurance industry. For Canadians, being unable to access timely and/or appropriate effective care in Canada for Lyme disease is unacceptable and a travesty. New progressive national standards haven’t been set and PHAC have made it clear that none are planned and if nothing is done here we may be in the same position 25 years from now. Canadians can’t understand why we can cure Ebola half a world away but do nothing about Lyme and other tick-borne diseases.
The opinions are those of the author who was diagnosed and treated for chronic Lyme in the U.S.
I am con founded how Moriarty could say this : ““If it works and it is safe, the Canadian government should be putting a lot of money into getting this out there,” Moriarty says, “because I think that’s going to be single-handedly more effective than anything else.””
how can this possibly be an evidence-based statement? this poor, well-intentioned person is drinking the Kool-Aid and parroting whalut the Old Guard have to say.
Tara, I see that you are a hard-line believer in Post Treatment Lyme Disease Syndrome and do not believe the bacteria persists beyond basic, one-size-fits-all doxy treatment of 10 days. There are, however, copious studies that (at the very least) suggest this bacteria can evade this simple treatment, and even longer treatment regimes. Strain variance and co-infections further complicate recovery and warrant a different, more diverse, approach. There is no science that proves PTLS exists as you cannot prove the non-existence of something.
You also do not believe that borrelia can be transmitted congenitally even though there are very convincing studies that show this is a very real possibility (like the 1985 study where an infant of 5 days perishes and autopsy finds the bacteria peppered throughout the newborn – the mother was a chronic Lyme sufferer.)
For myself, I am so very grateful that I did my own research and realized that “Lyme” could be chronic and complicated by co-infections. Four years of antibiotic therapy saved my life. I had a bull’s eye rash after a tick attachment, but tested negative in Canada several times over the course of 2 years. My health declined to the point that I was bed-ridden, unable to even speak, and in danger of death due to my failing heart. I could no longer look after my two young children, and I had to stop working. I wanted to die. There was no doubt I had Lyme as I had a well-documented bull’s eye around the tick bite-site and, later, several secondary bull’s eye rashes on my chest (documented by my cardiologist.) Mine was a “text-book” case, and yet, I could get no help in my own country. Antibiotic therapy, received from an out-of-country doctor, slowly brought my health back (and every time I tried to stop, I would relapse.) I have now been 100% symptom free for over 8 years. I shudder to think of what may have been had I listened to those, like you, Tara, who blindly “believe” Lyme cannot be chronic.
Post-treatment Lyme disease syndrome is illness that persists after treatment…essentially what you describe. Severity varies in different people, but an estimated 10-20% of LD patients develop it. I don’t think I understand where you see that we disagree, and I’m not sure what you mean by hardliner. It’s well-documented that post-treatment syndrome exists in patients. Perhaps you have misunderstood me, or I don’t understand you?
My apologies–I was focusing on the PTLDS part of my response a minute ago. I also wanted to say that I am so sorry for what you went through. And you’re right….no one should be missing a bull’s eye rash diagnosis. We have to work to make sure this doesn’t keep happening, and that people get treated right away if they have this rash, without waiting for lab diagnostic tests. It’s precisely because of stories like yours that we need to make sure people with the rash get treated fast. It’s harder for people who don’t develop the rash….that’s where the treatment can be delayed because diagnostic tests don’t work very well in the beginning of the infection.
And actually, I do think the bacteria can persist, but I don’t think anyone knows yet if this explains persistent disease. In microbiology we know now that there can be bacteria in many parts of the body where we didn’t use to think bacteria existed unless people were sick, but it seems as if the numbers are small enough there’s no illness. If there are some LD bacteria around still, whether alive or dead, does this make people stay sick, or is it something else? That topic is something that researchers are thinking about and trying to understand, and it might have just as much to do with differences between people as whether bacteria are still there causing disease. We also have pretty strong clinical trial data showing that extended antibiotics don’t actually help and cause harm. So the question now might be are there other ways to think about why disease persists in some people. Certainly, autoimmunity is one theory, and there are others, but this is one area where we still need to do a lot of work. And maybe it does have something to do with the bacteria themselves. There are a lot of theories to be tested. But we’re pretty sure right now that the risk of taking long courses of antibiotics is higher than taking shorter 1 month courses, sometimes 2 in a row, and we know that the longer courses are not helping people in clinical trials. I know this isn’t a black and white answer, and that it’s frustrating that research is so slow, but people are really thinking about these issues and trying to make progress.
Tara, You use the phrase, PTLDS which assumes that symptoms are not caused by ongoing infection. Others (myself included) understand that a chronic form of the infection causes symptoms. This understanding comes from my own experience, and from the many studies on the subject. Symptoms are not caused by the bacteria itself, but rather, the body’s immune response to the bacteria. We know that it is very difficult to “find” borrelia in the blood of infected patients, partly because it quickly disseminates to other areas, but also partly because a very small amount of the bacteria are actually there, even during the acute stages of the disease, and even this small amount causes symptoms in a body.
You warn patients against the use of long-term antibiotics. Would you warn a patient with syphilis or TB away from long-term antibiotic use? Treatment of these diseases is between 6-12 months and involves a multi antibiotic regime. Would you assume that a patient with syphilis, who relapses after a 10 day course of penicillin, suffers from “post syphilis treatment syndrome” rather than a chronic form of the disease? Would you counsel them to just learn to live with their symptoms? As you know, there are similarities between syphilis and borrelia in that they both have a persistent form that needs to be addressed with treatment. Unfortunately, doxy does not. Dr. Ying Zhang understands this well and has some good ideas to address treatment failure in those with chronic Lyme disease (yes, chronic.) http://lyme-basics.com/2017/08/07/interview-ying-zhang/
PTLDS is post-treatment Lyme disease syndrome. It just means that someone has symptoms after treatment, but does not make assumptions about what causes these symptoms. We just don’t know yet what causes PTLDS, and why it happens in some people and not others.
I am encouraged by this dialogue. We can find the common ground – we can do this!
I really, really, dislike the term “Syndrome” when applied to “Post-Treatment Lyme Disease”.
Lyme Disease is known to be an infection. It is not a cluster of symptoms. The latter is a syndrome, the former is a disease.
Would you tell a cancer patient they have ‘post-treatment cancer’?
That’s why people are so mad. The term “Syndrome” denies the existence of the disease.
It also has implications for getting insurance coverage for income support, prescriptions, treatments and medical devices.
What’s causing these symptoms?
There is already a huge body of knowledge on this. The arthritic-type Lyme Disease (which the tests are designed to catch – with high antibody responses) are treatable with antibiotics, but the neurological Lyme is a different beast, and the immune suppression caused by the bug is at the heart of Epstein-Barr and other viruses running rampant again even after the bugs might seem to be under control. If you read the IACFS/ME Primer for Clinical Physicians, 2014 Edition it clearly states that M/E often appears after an infection.
This is a no-brainer.
There is a common mechanism to the diseases and ‘syndromes’ and there are thousands of papers already out there to support this – some even written by the Old Guard who changed their tune in the 90’s when profit-for-vaccines became possible with Borreliosis (Lyme Disease simply is the wrong name).
Let’s start by re-defining the disease for what it really is – and go back to the earlier case definition that was wider-reaching.
Let’s make the criteria for doctors to report the disease in Canada more realistic – less dependent on tests and more dependent on doctor and patient knowledge.
Let’s give patients the rights to choose their treatment plan and let’s give doctors the right to treat without interference from colleagues, Colleges and insurers!
Let’s do what was asked for by patients in the Ottawa Conference – the stuff that was shut down and not included in the final framework.
Speaking of defining the disease:
check out this video – “experts” on Lyme Disease in Canada – not knowing the case definition of the disease, which is the foundation for the faulty guidelines and the foundations for reporting a case to be counted in the stats Canada.!!
Starts at about 12:45 and is about 4 minutes.
These panelists said they were not familiar with the case definition/criteria for the disease, yet those are the very criteria on which the faulty IDSA guidelines are based. One of these panelists, I believe, is on the committee in the U.S. that is in charge of reviewing the guidelines.
Given that doctors are in Canada are not required to disclose conflicts of interest, distrust will continue. We need big changes.*
Let’s find the common ground. Let’s get the Old Guard to go away and empower patient groups, physicians and advocates to be part of the process.
* reference: http://www.cbc.ca/news/health/second-opinion-conflicts-1.4102733
Yes, here’s to finding the common ground!!!!!!! We can do this and we must, because we have to make research progress on this topic.
As I said to another person who has commented here, I can’t get back to people about the latest round of comments for another couple of days, because I have 2 big deadlines in the next couple of days. But I’m not ignoring anyone, and will get back to this as soon as I have enough to respond properly.
I wonder if we could use this comment section to start identifying the common ground issues, such as many of you have identified. Would other people following this comment section be willing to start posting some of their ideas? It would be so helpful for all of us….
That is “bunkum” Tara. You know perfectly well the two camps in this debate: chronic and PLDT syndrome – the name itself excludes ongoing chronic infection as cause – “post treatment” assumes appropriate and complete treatment. I’m not sure why you are playing semantics but I might ponder that you are trying to get Lyme sufferers on your bandwagon as you cannot get the $4 million grant without patient stakeholders. You will find, however, that Lyme sufferers are a well-read bunch and will not fall for this.
Post-treatment just means symptoms that continue after treatment. Since we don’t know what causes these symptoms, they’re referred to as post-treatment. One day if this is better understood the name may change to reflect that.
We’re actually seeking Lyme disease patients and caregivers who would like to join the network as advisers, to help us plan our research program and oversee research progress. If you’d like to join, just let me know. You can find my lab email at the lab website: http://moriartylab.org
The whole concept of “Post Treatment” is a gonger.
Here is the reference regarding the # of *new* cases annually being more than HIV-AIDS and Breast Cancer combined. It is a U.S. statistic. The reporting criteria for the disease are so restrictive in Canada/BC, that doctors are hardly ever able to report a case that fits within the criteria. The criteria are based on out-dated Infectious Disease Society of America Guidelines.
329,000 new infections per year estimated in the U.S.A. ”
That’s more than HIV and Breast Cancer diagnoses combined”
“Lyme can kill people”
“Everybody has a pre-conceived notion of Lyme Disease, but..”
“It imitates MS. It imitates rheumatoid arthritis.”
“It can ruin a family, with the amount of stress…”
“Lyme is a very cruel illness…”
“words have meaning – imitating, mimicking, causing” (e.g. MS)
“Lyme-induced Parkinsinism, Alzehiemers”.
“Chronic Lyme is absolutely a real thing”
“Post Treatment Lyme Disease Syndrome – “Why would you make up a second disease that has the exact same symptoms as the first disease. That is the most idiotic theory ever…The CDC (Center for Disease Control) have aligned themselves with this theory, and I think its wrong.”
If symptoms persist after treatment, then the proper term would be FAILED treatment. Not a syndrome. A fact.
Another fact – found at http://www.truthcures.org is that there is NO cure at present for the B-Cell AIDs immune suppression which is the real culprit here. Spirochetes or no spirochetes, once your immune system gets trashed by Borrelia, Mould, Chemicals, Infection…you end up with a kind of chronic post-sepsis ‘syndrome’.
Definitely Doctors need education on Lyme Disease. Their recommendation of “Mindful Meditation, Relaxation Therapy, Exercise Pacing, or keep an eye on the rash and see what happens,” Does nothing for treating the bacteria. This is very unethical, and a discredit to the medical community.
Naturopathic physicians are decades ahead with knowledge and treatment for people with Lyme Disease.
The Patients who have had naturopthic treatment from such a debilitating disease, where medical physicians failed to recognize and treat, are in the least, perhaps more educated and open minded than what continues to be a closed subject to the medical community.
If a patient has a bull’s eye rash, there is no need for testing and antibiotic treatment should be started immediately, as specified by treatment guidelines in Canada and the U.S. Waiting and watching if there’s a bull’s eye rash should not be a doctor’s response unless s/he is not aware of current guidelines. If someone does NOT have a bull’s eye rash or history of one, but has other specific symptoms consistent with LD (e.g. migratory arthritis) and has been in or near any endemic region, then they should be tested to confirm a clinical suspicion of LD. I’m pretty sure you’re very aware of these guidelines, but want to make sure the info gets out there in case there’s anyone reading this who doesn’t know that a patient with an EM rash must be treated, without waiting for laboratory diagnostic results. Just in case there’s someone reading these comments who doesn’t know how to find the Canadian or U.S. guidelines for diagnosis and treatment of LD, I’m providing the links below.
Further, many do not know that if someone finds an engorged tick on themselves (a puffed up tick that has likely been feeding on you for >24h), and if they were in or close to an area in the preceding day or two where >20% of ticks carry Lyme disease bacteria (endemic), then this person should go to the doctor immediately to receive prophylactic antibiotic treatment to reduce risk of contracting infection. In Canada, the tick data for different regions where LD is emerging are found on the Public Health Agency of Canada website, and your doctor may find it helpful to have this website if s/he doesn’t have a lot of experience yet with LD in your region. It’s important for healthcare providers in Canada to be aware of these maps and local public health announcements about LD, because it is emerging here and a region that is lower risk could become higher risk from one year to the next. Anything we can do to get even the official guidelines out there will help patients who could fall through the cracks in areas where physicians are not yet familiar with diagnosing and treatment.
Finally, in higher risk areas, wear protective clothing (pants tucked into socks) and DEET-containing insect repellant when out in tick habitat (long grasses, green areas), check yourself for ticks and shower after being in areas where they carry Lyme disease, and as one last measure, throw the clothes you were wearing in the clothes dryer on high heat for an hour when you get home, since these measures are the most proven ways of protecting yourself from tick transmission of LD.
Sorry for the long response, and please don’t hesitate to get in touch.
CDC guidelines (U.S.): https://www-cdc-gov/lyme/index.html
PHAC/Health Canada guidelines (basically same as CDC): https://www.canada.ca/en/public-health/services/diseases/lyme-disease.html
What do you suggest a person do when they are turned away by a doctor, despite presenting with a bullseye rash? Sadly, it happens.
Also, not at all LD rashes are classic bullseye, but are but are indeed from all the Borelia bug.
We need to make sure physicians know the bull’s eye rash is diagnostic and that treatment should start immediately. It may be useful to provide the Health Canada link I provided in these comments, so that it’s easier for a physician to check the guidelines. Health Canada is now putting pictures of different standard and less standard bull’s eye rashes on its pages, to make it easier for physicians and members of the general public to recognize them.
The Public Health Agency of Canada, recently removed the Outdated 2006 Lyme Disease Guidelines that didn’t meet the Institute of Medicine Grade. However, there is International Guidelines that do meet the Institute of Medicine Grade. The “International Lyme and Associated Diseases Society (ILADS)”
The AMMI Canada and CDC are still in the process of updating new Guidelines which still resemble the old Guidelines.
Clinical representation often overlooked. Unknown Common chronic conditions given/diagnosed.
“Bulls Eye Rash”- Not straight forward as most might assume. Most common response from Physicians is that patients are told spider bite, Ringworm and no treatment administered. Physicians in the medical field continue to be kept in the dark with restrictive Guidelines from CDC/AMMI/NIH/IDSA. Common Sense, Morals, Ethics are gone.
glad to see there is some common ground here…we agree that a “bullseye” rash often does not look like a bullseye.
oh absolutely we agree on that….it’s not that easy to recognize the rash sometimes, which is why having pictures of different examples on the Health Canada site is really helpful. And it depends on where it is too. It can require some experience to recognize a bull’s eye rash, which is why diagnosis can be challenging for doctors who haven’t seen a lot cases yet.
You say 24 hours that the ticks needs to be feeding. I have not found ANY science that proves this time frame is required in fact I have only come across science that basically indicates that the time frame is unknown and that if the tick has already partially fed on another host that it would likely take much less time to pass the bacteria on. This is where distrust comes in when doctors and reserachers insist on so called “facts” like this that cannot be traced back to the scientific literature. I quote ” The claims that removal of ticks within 24 hours or 48 hours of attachment will effectively prevent LB are not supported by the published data, and the minimum tick attachment time for transmission of LB in humans has never been established.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278789/
Dr. Chan is an expert on Lyme disease, and works tirelessly to understand and treat each individual who seeks his help for Lyme. I was diagnosed with Lyme after the emergence of a bullseye rash after a camping trip, followed by many symptoms and then the results of a skin biopsy. My GP is wonderful and supportive but is not an expert on Lyme. I sought out Dr. Chan for his expertise and he spent 2 hours with me for an initial consultation and it was the most thorough and comprehensive I have ever had. To quote his comments in this article, followed by an ‘expert’ who denounces all naturopathic treatment is shameful. Given the wide and vast treatment modalities within a naturopathic framework, anyone who states they are ALL without merit smacks of a personal, not scientific, prejudice and – at least for me – removes any confidence that the person making the statements is operating from the open, scientific neutrality required to move the understanding and treatment of a disease forward. Disheartening and disappointing from an ‘expert’.
This is a really good point. I thought the article was good at conveying that Dr. Chan is dedicated to his patients, spends the time with them that they need, and likely provides the personalized support that is challenging in conventional medicine. Practitioners like Dr. Chan are really important for supporting patients if they do no harm, and if they don’t make claims about treatment efficacy that aren’t supported by good quality research. But there really is absolutely no properly controlled, peer-reviewed research-based evidence that naturopathic treatments are effective for Lyme disease, or are any more effective than the placebo effect (which is itself powerful). Of serious concern is that some treatments that are used, such as intravenous hydrogen peroxide or bleach are dangerous, as you can imagine. Dr. Chan prescribes antibiotics, and may not prescribe them for patients who he does not believe are experiencing infection-related symptoms. That’s really important, because antibiotics are the only proven treatment, and it sounds like he provides them when he feels they’re warranted. I would imagine/hope that Dr. Chan doesn’t present naturopathic treatments as proven treatments, but instead as something a patient could try out to see if they help. If the treatments aren’t dangerous to patients, and if they’re not marketed as being a proven treatment–i.e. if practitioners are truthful and patients want to try something out that’s not dangerous, there’s no harm in using these approaches if a patient has the funds to pay for them. But, if the treatments offered are dangerous are claimed and marketed as effective without evidence, then this is where there’s a problem, especially if treatment is a business. It’s always worthwhile to be skeptical if someone selling something to you makes claims that are unfounded, especially when it could affect your health. And if no claims are made, and the practitioner spends time and listens and the treatments are not harmful (e.g. intravenous hydrogen peroxide or bleach), then the service may well be worthwhile, especially for people who are suffering. A long response–I’m sorry–but basically I agree that a practitioner who is dedicated is very important. It’s dangerous treatments and unsubstantiated science-sounding claims about treatment that have to be watched out for. Marketing these is highly unethical. And I have no idea if Dr. Chan does any of these things, so my comments may not apply to him at all. It’s up to patients to consider some of what I’m saying when considering possible naturopathic treatment, or not. I’m happy to talk to anyone who is worrying about these issues when considering naturopathic treatment, and to explain what is and isn’t known from studies in the research literature. I am in fact always open-minded but skeptical, but do not have a warm place in my heart for any practitioner who exploits someone’s suffering by making unsubstantiated treatment claims, especially anyone who uses a therapy that is both dangerous and unproven.
Dr. Cham is very mainstream in his approach. He would never condone anything that is woo-woo. There are hundreds of peer reviewed artockes t sypport whst he does. As you may know, there are two sets of guidelines; IDSA and ILADS. The former, which you are referring to, have been removed from the CDC website, or were recently, I haven’t checked. Also, they have been discarded.
instead of imagining, how about you talk to Mr. Chan and people like him, and find out what they actually do?
we need to find the Middletown. Too many people are dying and losing everything.
Vaccine is not the answer. It didn’t cause side effects, it caused the same symptoms as the actual disease. That is because they used a synthetic outer surface protein -Pam3cys, and they knew darn well that it was going to make people sick. That is why they excluded 85% of the people from their newly designerd definition of the disease.
I would like to see full disclosure please and thank you. Are you in any way involved with the vaccine development and is this article intended to discredit alternative treatments so that you – accidentally or not -to advertise and promote your claim to the funding over other groups which have thus far been denied the right to apply for the grant?
Our network won’t be looking at a vaccine at all–there’s no where near enough money to do this. And I have no involvement in vaccine research, own no shares and in no way am affiliated with Valneva or any other vaccine manufacturer. My lab studies how the bacteria that cause Lyme disease spread through the body, and how conditions like obesity and diabetes affect infection by these bacteria. I am purely an academic researcher with no commercial ties.
Respectfully, perhaps full disclosure could go a little further here?
You are co-leading the one camp that is seeking the research funds, and are speaking only on their behalf and their beliefs, which are Old Guard at their base.
It is not an easy situation for you to be in.
However, if you want patient buy-in, you have to stop bashing our knowledge base (well researched and evidence-based) and you must especially stop bashing and misquoting life-savers like Dr. Chan. You make it look like only naturopaths in BC support long-term antibiotics, infrared sauna, Vitamin C IV etc. but nothing could be further from the truth. I hope you are aware of the many MD’s who were driven out of practice by the Old Guard? Ernie Murakami, for example, was able to save a patient that the same ID doctors who attacked him failed to save.
They drove him out.
You are co-leading of #1, below, correct?
“…the federal government announced $4 million of funding for Lyme disease. The funding process has started, and patients are starting to receive invitations to participate in various ways.
Patient participation is typically a requirement for funding.
There are two different Canadian Lyme research networks:
1. The Canadian Lyme Disease Research Network (LRN), and
2. the Canadian Lyme Consortium (CLC).”
The IDSA guidelines that the Old Guard (sorry, Tara, but I see you in that camp) have been punishing people with for years are under review, true? The people doing the review are the same people who have conflicts of interest as they did before? Some of the people involved are the Infectious Disease doctors (eg. Bowie, Patrick) who have been dismissing the disease outright, and telling people on the air (without reading our files) that they don’t have Lyme Disease (reference BC Almanac, Dr. Bowie)?
Currently, those guidelines are not even valid… unless I’m out of date on this?
“This August 2017 letter from Ontario Health Minister Hoskins mentions: ‘doctors/nurse practitioners’s are encouraged to follow clinical practice guidelines developed by specialist bodies.’
It is important to note that one of these specialist bodies is the International and Associated Diseases Society – ILADS – these are evidence based treatment guidelines and currently listed as the only Lyme guidelines on the National Clearinghouse website. ”
Info on National Clearinghouse Guidelines as Evidence Based : https://www.guideline.gov/
Some of the remarks about minimal antibiotic treatment, referring to chronic Lyme as PTLDS and the suggestion of further development of a vaccine really indicate to me a disconnect with actual Lyme patients. My niece and I have both been diagnosed with Lyme out of country and most people who have this disease (call it what you want) have never been counted as “valid” cases. Without long term antibiotics I have no doubt that my niece would be dead or profoundly disabled. As for me, I have never been treated with antibiotics so my undiagnosed chronic symptoms (over 13 years) are not “post treatment”. I’m tired of reading articles that villanize the brave doctors and others who actually deal with these patients instead of telling them it’s a somatic condition. When there is so little funding for Lyme studies of course scientific evidence is harder to come by. Please watch this playlist of Lyme experts. There is a lot of information available right now if the right people would just pay attention. http://www.youtube.com/playlist?list=PLFnOe93__ByZLbljPT0sQlUVJ-b1WX5sx
Congratulations Viviane on a well-written article on a topic that deserves even more attention than it is currently receiving. I encourage you to dive deeper into the topic and to question/re-question your sources as you discover more about this wildly complex topic. It is incredibly easy to fall prey to the political agendas of those that are deeply invested/involved in this topic. In particular, I would like to draw your attention to the science, medicine and government sources of anything Lyme or tick-bourne disease related. The science, medicine and government establishment have the most to lose and gain from controlling the ‘spin’ of the evolving Lyme saga. Conspiracy theories abound regarding Lyme but the negative connotations associated with the term ‘conspiracy’ do not necessarily make them untrue. The world needs people like yourself to take a closer look at all the stories and sort through what is fact and what is fiction. Thanks for your efforts! If you need a further perspective on this (ha ha!) please feel free to contact me.
“identifying proteins specific to Borrelia burgdorferi.” is unclear. The WB looks for antibodies to specific Borrelia proteins.
your attack on Mr. Chan is unwarranted and not supported with real evidence. Just saying something is bunk is one thing, but you had better prove it. There is lots of evidence to the contrary. Plus, why is a writer from the USA attacking someone in Canada, other than perhaps you are being funded by the evil Old Guard in the USA who are oppressing people and keeping them very very ill.
Follow the money. The definition of the disease was changed in the 90s. This was so a bunch of crooked, profiteering medical officers and others could make an attempt to monopolize the market for vaccines and test kits. You cannot make a vaccine for this bug, due to its antigen varying, nature.
shame on you for writing such a disparaging, opinion piece, and camouflaging of the scientific. Shame. Shame. Shame.
do your homework next time you decide to put pen to paper.
start with this:
It was actually Tara Moriarty who was slanderous. She has a habit of cherry-picking science to suit her own ego and, perhaps, her pocket-book. Her comment her about vaccines should give us a good idea where she wants to go with the $4 million, should she get it.
Follow the money . . .
$4M is a drop in the bucket for vaccine research when it comes to clinical trials. I think it’s unlikely that these would happen in Canada, although people who are interested in participating in the ongoing international clinical trials of the Valneva vaccine might want to express this interest to Health Canada. The vaccine was fast-tracked by the U.S. FDA, which essentially means that more people can enroll faster in the trials because the safety and efficacy data so far have been good, and some people might want to participate in the trial to have access to the vaccine. Health Canada makes these decisions, and I’m not entirely sure about how the process works, but if there are any Canadians who are interested, please get in touch and I’ll get hold of the information about the process for you and help you get in touch with the people who would field these enquiries. Neither I nor my lab would be getting funds from the network we’re proposing. I’m co-leading it on a voluntary basis because there aren’t enough LD researchers in Canada, and I have the expertise to ensure that we do high quality research that will help Canadians. It would be much easier and less time-consuming to focus on my own lab’s research and my family commitments than to co-lead the proposed network or spend time doing interviews and trying to get correct information out to people. I’m doing this because it needs to be done, and it needs to be done now, as the disease is expanding into Canada.
what is your view on this vaccine idea?
How can one create a vaccine for am antigen/varying bug that blebs (drops) stuff that creates endi-tolerance and immune suppression in many patients (B-cell AIDS)?
There is no vaccine for syphillis – because of it also being an antigen/varying bug, so why do these people think they can make one for Borrelios?
What I know right now is that the Valneva vaccine is looking promising in clinical trials in Europe and the U.S., which is why it has been fast-tracked by the FDA. We won’t see the data until the trials are done and published, but the early data has been seen by the FDA. So, fingers crossed that it will work AND be safe. But, like everything, it’s important to see the data when they come out. There’s hope, but we’ll see what it actually looks like when the information is available to all of us.
Sorry–forgot to reply about the syphilis vaccine. The reason that there isn’t a syphilis vaccine is not for the reason you explained, but something a lot simpler. Syphilis bacteria are really, really hard to grow, and syphilis research is much slower and tougher than for many diseases than because of this. Because research is so slow, it’s been tough to identify syphilis proteins that might be good vaccine candidates, and you can’t make a vaccine simply for killed bacteria because you could never grow enough to use for vaccines. But there are studies coming out now about syphilis vaccines, including one from Caroline Cameron at the University of Victoria: http://www.nature.com/articles/ncomms14273. It’s still very early days, but maybe one day there will be a syphilis vaccine.
tara are you saying that the syphillis bug is *not* antigen-varying? There is no way to produce an effective vaccine for such critters.
Also, why spend all the money on research and especially any that support the status quo and vaccines? There is a tremendous body of knowledge out there already to leverage. Spend the money HELPING people who are sick!!!
ps _ what do you make of this article? There’s no “Syndrome” double-speak going on here. Vive La France.
Plan Lyme: Christian Perronne announces “a big breakthrough” for the patients.
Publié le 12/03/2018 à 14h00
I have not fact-checked this announcement, or the translation (below), but I understand it is true because the people who are sharing it are pretty reliable sources.
“A specialist in Lyme disease, the infectious disease doctor Christian Perronne contributed to the development of the care protocol, which should be made public in April. He will be in Aurillac, Thursday, March 15, for a new conference.
The national protocol for diagnosis and care promised in the Lyme plan, launched in September 2016 by Marisol Touraine, then Minister of Health, will be unveiled in the coming weeks. For the patients as for the doctors, it will be “a great advance”, promises the professor Christian Perronne, specialist of the Lyme disease and member of the working group in charge of elaborating the new recommendations.
The new care protocol was announced for July 2017. Why such a delay?
It took time to reach consensus on the recommendations. The last meeting of the working group was held on March 8th. Our conclusions must still be validated by the College of the High Health Authority, then by the Ministry of Health. The protocol should be published before the end of April. Then we will have to work with infectious disease specialists to determine all the recommendations.
How will this protocol change the lives of the sick?
I am convinced that it will improve their care. Moreover, it was the goal of the public authorities, doctors and learned societies at the launch of the Lyme plan: we can move forward together, stop saying: “What the other is doing is whatever!” and above all, we realize that there are patients in great suffering. New scientific data will arrive.
If the doctors see that they can move forward in a certain way, that they can go out of hiding, that they will not have a problem with their colleagues, with the Council of the Order of Doctors, or with the ‘Health insurance, they will move. This new protocol is a big step forward. It is far from perfect, there may be criticism on this or that point, but a dynamic process is launched. It will be re-evaluated every two years.
Will the protocol define the ideal treatment?
No, because today we are unable to say: “The best treatment is this one”. For example, there will be no maximum for the duration of an antibiotic treatment. It will be left to the discretion of the doctor. You cannot set a maximum for the simple reason that there has been no research on Lyme for thirty years.
We have no data, all the studies that have been done have been limited to three months. Now, we will be able to monitor patients, record practices, see what works best … It was the goal of the working group, frame what is being done to try to evolve. Our approach is pragmatic, it leaves the door open … And it suits me well.
A framework – what does that mean?
Exactly, we do not know. And that’s what worries me. Saving information and feeding databases takes time. Only in infectious disease services, we do not just Lyme! So, it will take manpower. For pure research also, for example if one wants to evaluate a strategy over a specific period, it will require funding. Without important means, it will never be done well. Of course, it will be expensive at first. But afterwards, the state will save money, because these patients will be better managed.
It is expensive, a patient wandering for fifteen or twenty years. There are work stoppages, repeated hospitalizations, hundreds of scans, MRIs, biological tests, tons of antidepressants, physiotherapists … All that accumulates, it ends up making astronomical sums. With recognition of the disease, health economics researchers will be able to make assessments. So far, there have not been since these patients do not exist!
Your previous conference in Aurillac is June 29, 2017. Will you be the same on March 15 at the convention center?
It will be a little different. Since June, there have been new scientific references proving the existence of chronic Lyme disease, so I will insist on that. There are also known publications, which I did not highlight enough last year, and which show the persistence of clinical signs in many patients after the official three weeks of antibiotics. There are at least fifteen publications that find Borrelia bacteria in humans who have received short-term treatment. All data overlap, so cannot say that chronic Lyme does not exist.
Professor Christian Perronne will host a conference on Lyme disease Thursday, March 15, at 20 hours, in the atrium of the departmental council in Aurillac. Free admission.
Healing rarely at 100%
On January 31, 2017, the Public Health Unit of the Paris Public Prosecutor’s Office received a complaint against X for aggravated deception. The complainant is an Aurillacoise revolted by the ineffectiveness of screening tests for Lyme disease. Handicapped by extreme fatigue, this Cantalienne had met Professor Christian Perronne after a long wandering diagnosis. For ten months, she received an anti-protocol antibiotic treatment, prescribed by the infectious disease doctor.
Today, she is better and gradually resumes her professional activity. “I’m like before,” she says. As before, or almost: lack of concentration, it is still impossible for her to drive long.
The proceedings initiated on January 31 by a Cantalienne suffering from Lyme disease is still ongoing.
“It is common not to see a 100% permanent cure,” notes Professor Perronne. “We see people who always keep a little tired, we see others who resume a normal life, but who have seizures, more or less long, more or less regular. They are tired, they have disorders of the memory … “It shows that the Borrelia is still there, even if it is under control”.”
Tara, Why would they need a vaccine for a bacterial illness that is so rare and easily treated with antibiotics. There is no such thing as chronic lyme, right?
Sorry, I didn’t understand your question. Neither the bacteria that cause Lyme disease nor the bacteria that cause syphilis are rare. They cause a lot of disease worldwide. Vaccines could be especially useful to prevent infection that is hard to avoid in the environment (e.g. Lyme disease-carrying ticks in some regions), and where other prevention methods like protective clothing etc are challenging to follow consistently.
I thought Lyme was rare in Canada because that’s what I read on the government website. Also, it says that antibiotics cure it in a week or so just in case you get it so it doesn’t seem that serious. That is why I wonder why you would need a vaccine for it.
The Health Canada Lyme disease website doesn’t say the disease is rare or that it can be cured with a week of antibiotics. Here’s the link: https://www.canada.ca/en/public-health/services/diseases/lyme-disease.html . In most cases treatment is successful if done early. But, it can be serious if it progresses further, and some people can still have serious, persistent symptoms after treatment. Since lab diagnosis early on is not very sensitive, and since some people don’t develop the EM rash that is enough to diagnose the disease (without lab tests), there are people who can fall through the gaps and may not get diagnosed and treated until later. At later symptoms can be very serious. Some people live in areas where it’s really hard to avoid tick bites, and if a lot of those ticks are carrying Lyme disease bacteria, then vaccination is probably a really option to have available, since it reduces the number of people who even pick up the bacteria to begin with.
Please let me know if I can provide further info, and you can also email me (my lab website & email are at: http://moriartylab.org)
This is what I found, “There is only a very small chance of ticks transmitting Lyme disease to humans.” http://www.bccdc.ca/health-info/diseases-conditions/lyme-disease-borrelia-burgdorferi-infection
This is what my doctor said and he told me to look on this site when I was bitten by a tick. Do you think he was wrong?
Chronic lyme is a fake disease. https://www.thedailybeast.com/real-housewife-fake-disease
Naturopaths are fake doctors. https://sciencebasedmedicine.org/naturopathy-vs-science-facts-edition/
Non believers should be infected……then they will see and feel the suffering from this disease !!!!!!!!
Frontiers of Medicine 14 December 2017 | https://doi.org/10.3389/fmed.2017.00224
The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome
imageAlison W. Rebman1, imageKathleen T. Bechtold2, imageTing Yang1, imageErica A. Mihm1, imageMark J. Soloski1, imageCheryl B. Novak1 and imageJohn N. Aucott1*
1Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, United States
2Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine, Baltimore, MD, United States
Conclusion: Although physical exam and clinical laboratory tests showed few objective abnormalities, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls. Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.
Hi Colin–this is a really good study. Thanks for posting it. People can be very ill with PTLDS, and yes, we need to figure out the best ways to treat it, and to train doctors to anticipate it, recognize it and treat it, especially Canadian firstline doctors in emerging areas who may not have seen much of it yet. At least 10% of conventionally diagnosed cases develop PTLDS, and we need more researchers like Aucott and colleagues who are studying it in very carefully defined ways. This study is important for patients and the medical community because it reports tools that will be useful for other researchers studying this condition. Thanks again for helping point people toward it.
Even Johns Hopkins University says it is not a fake disease.
Exactly….the link you’ve provided links to the study by the group of Johns Hopkins researcher John Aucott that Colin Varga posted above. The study found that some people with conventionally diagnosed Lyme disease continue to experience functional impairment after treatment (e.g. reduced quality of life, fatigue). This study was extremely important because it provides a way to document patients’ experience of posttreatment symptoms that are not biologically specific–i.e. symptoms that aren’t accompanied by changes in something like a blood test. It’s an incredibly important study because it validates the experience of some patients who continue to feel unwell after treatment, and we need more research like this.
patients who report that their
Great information and update of what’s going on to help PEOPLE with tick bites and disease, without the benefit of the “bullseye” evidence. Treatment is given prophylactically for other things and the human cost – physically, psychologically and every other way, but for the cost of antibiotics for a month, is starting to look criminal! We need a few important people to acquire a tick bite and see how it goes! Surely action now is required! Walk a mile in the shoes of a victim! Surely antibiotics for a month will not be the reason for antibiotic resistance? If a vet gives animals antibiotics following the discovery of tick bites, surely the animal’s owner deserves no less!! FIX THIS, PLEASE!
* The star of the show “The Curse of Oak Island” on the History Channel got bitten and also had the bullseye evidence, so received 30 days of antibiotic treatment . So very fortunate! I was hoping his experience might help the cause, but no evidence that I have heard / seen. Thanks for letting me rant :)).
In a reply above to Sue McDougall I talked about treatment. You’re absolutely right. Someone who has a bull’s eye rash should be treated immediately, without any need for confirmation with lab tests. And under the specific conditions described in my response to Sue, people should also receive prophylactic antibiotic treatment. The prophylactic treatment is only 1 or 2 doses of doxycycline, but people should be getting it if they fit the risk profile described on CDC and Health Canada sites. It’s really important to get the word out about this, so that people get prompt treatment and reduce the risk of developing disseminated Lyme disease (infection that has spread out of the skin to other sites) or posttreatment Lyme disease syndrome (described in response to Colin Varga). I hope this information helps someone–I’m not providing it to explain it to you, but to anyone else who might be reading these comments.
Also, prescribing 4 weeks of antibiotics if they’re not warranted is in fact not safe, and we learn more and more about this everyday as we understand more about the effects of the antibiotics on our microbiome, and the importance of our microbiome for immune function and many, many aspects of health. So, you actually don’t want to be getting 4 weeks of antibiotics unless there’s a good reason to do it. Maybe we can find a forum to talk about this at some point–you, me or anyone else who wants to talk abut why antibiotics should be used with care because they’re not benign. It’s too much for the comment section here, though!
And one last thing I want to add, not really related to your comment specifically. There’s widespread agreement that we need better laboratory diagnostic tests and understanding of how to understand and treat disease in LD patients who develop posttreatment syndrome. The current tests are not sensitive enough in the few weeks-1 month of infection when antibiotics are most effective–in fact the sensitivity is really poor. And, for statistical reasons, they’re basically ineffective at predicting LD in non-endemic regions, so they can make diagnosis confusing for patients and physicians. This is actually really common for diagnosis of infectious diseases, since many diagnostic tests rely on antibodies, and these don’t develop right away when people are first infected. In addition (I’m on a roll now) we don’t understand why some people get posttreatment syndrome and why some don’t, although there is finally starting to be some research progress in both areas, or at least the development of new methods to test and try. It takes years to do this kind of work, and it requires patients willing to donate samples and time, sometimes on a regular basis while they are being treated. One thing many people can do to help is to help get the word out about research projects and trials who need people to enroll. Sometimes these studies can’t be completed because not enough people can be enrolled and/or others drop out if it’s time-consuming or challenging in other ways. So that’s one way to help speed things up. And the other is to make sure that even the most basic diagnosis and treatment guidelines get out there so that people with clear-cut risk or symptoms get the treatment they need. We should certainly be able to make progress on that, while the long, slow process of research on diagnostics and treatment moves forward.
Please don’t hesitate to get in touch if you’d like to, and thank you for your comment.
Moriarty says those marketing ozone therapy are “acting unethically”. I was lucky to find out about ozone therapy and as a result was relieved of years of pain caused by Lyme disease. The medical community, including Moriarty, have completely failed Lyme disease sufferers and it makes me angry and frustrated that they are trying to debunk therapies that obviously work for many. If you suffer from Lyme disease after effects, I strongly encourage you to try ozone therapy.
I have no skin in the game and I’m exactly the opposite of unethical. Alternatively, the medical community is unethically putting down these treatments. The medical community have completely failed Lyme sufferers and it’s a big catastrophe. They should be ashamed.
I agree strongly!! Wouldn’t wish all the pain and misery that I see others living with year after year, on my worst enemy :((!
As you do your researchC please be wary of the Old Guard and their broken record approach.
Some interesting information here that contradicts what the IDSA Old Guard ( Canada and US) have been insisting, and which insurers have used to deny and cut off benefits:
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