Saturday, March 17, 2018

We Are All Learning About Lyme Except for the Ignorant

On March 9, 2017 I was interviewed by CBC radio along with another very knowledgeable and passionate Lyme Advocate. She was well versed in a lot of the studies which made for some interesting and revealing discussion. It reiterated a lot of the details that scientists and Lyme literate doctors had expressed to the Federal Ministers of Parliament during the roundtable I was involved in, in the House of Commons in December 2016 as a patient witness.  

The next day I found out CBC had done a phone interview with the President of the Canadian Association of Microbiologists and Infectious Disease (AMMI) in response to my interview the day before. I had no idea that was happening.  At first glance it was very upsetting to to hear her denial of most everything we said.  But with more consideration, for a microbiologist,  she didn't have any explanations and seemed very unaware of all the science that had been completed in the last decade.

Now, I will never pretend to know more than a microbiologist, but this lady was just plain wrong in her statements.  I was upsetting because it basically took away any validity to what I was saying, even though she was wrong. It had the Lyme community up in arms and several scientists and doctors came forward and wrote letters to CBC, citing a host of studies stating her claims where inaccurate. Basically they told CBC “regrettably, during the interview Dr. (from AMMI) made 8 statements relating to science, of which 6 were factually incorrect.”  

I was very grateful to the Canadian Lyme Science Alliance for publishing a rebuttal article in our defense:
I know if I made statements in my profession that were mostly false, I would be fired.  How is it that a medical professional, where people can become chronically ill or die based on their information, can say such flawed statements with no repercussions what so ever. 

CBC was considering following up on the story and eventually came back stating “they had shown both sides of the story and felt it necessary to leave it there”.  Well, I might no be a microbiologist, nor a journalist, but when you show one side of a story, then give the second side a chance to rebut all the issues but don’t allow the first side a chance to explain further, that is not showing both sides of the story.  In the radio interview, they would actually play things I said and then let the AMMI respond.  Where was my chance to respond?  Why wasn't I told that was happening? 

It has taken some time but I have gathered some of the data, proof, and responses to show that not only are they spreading false information and putting people in harm's way, but I deserve a chance to defend myself, that it fair journalism.  So here goes (in blue): 

CBC: We heard from Kristy Giles yesterday she says that she, and many people like her, are paying out of pocket for treatment in the US, some people are getting no treatment at all because their diagnosis isn’t even recognized in this country.  How would a new framework help people in a situation like Kristy?

AMMI: Well I think the goal of the framework was really to try and better understand what’s happening with Lyme Disease in terms of prevention, education, and research, and that’s why it had been put together um by the Public Health Agency of Canada.  And, soooo what we just had seen um on the internet recently in terms of posting for public comments was the first iteration of the summary of that conference.

You will notice she says nothing about diagnosis and treatment.  The Framework was lobbied to improve diagnosis and treatment and ended up having absolutely no reference to improving early treatment or helping those already infected.  

AMMI: In fact what happens is that um currently there is no scientific evidence in the medical literature that Lyme Disease can become chronic.  So, whether it is from the American er um er Infectious Diseases Society of America (ISDA) um or the erm Canadian Association of various physicians and including AMMI Canada.

Actually, there are 700+ peer reviewed scientific studies suggesting it can become chronic among other Lyme related information. If you haven't done a literature search, you should not state that there are no studies. 

Too bad you weren't aware that a formal medical definition for Chronic Lyme Disease was being written and was published in a medical journal two months after you made this statement.

AMMI: What we know is that Lyme Disease is transmitted by a tick bite – that it has, you know it can show up as an acute illness or a later um disseminated stage, but once treated with antimicrobials for um a maximum of 4-6 weeks, sometimes with a repeater treatment, there’s no evidence that it actually becomes chronic. 

There are too many studies to mention here on the persistence of Lyme. I will direct you to two of the most recent at this link:

There are numerous studies completed by many different researchers, that used a variety of methods, in vitro, in vivo, in mice, monkeys and humans, all showing that persistence of Lyme following infection and treatment.  You may disagree with some but to say there is no evidence is a complete lie.

AMMI: Now, what’s very complicated is that some patients who have had a diagnosis of Lyme Disease um will report symptoms that will become chronic. So, fatigue, um pain, joint pain, muscle pain, that will, that have been diagnosed in the US by an alternative lab and by clinicians without any lab tests, as chronic Lyme.  But that actual form of chronic lyme or Post Treatment Lyme Syndrome is not recognized currently by the medical community.

Clearly, she is unaware that the vast majority of Canadians do not receive any treatment what so ever, so it is a misdiagnosis and mistreatment of Lyme that is also the problem (as in my case). The International Lyme and Associated Disease Society (ILADS) refers to this as late, undiagnosed Lyme.  

ILADS President, Samuel Shor recently presented to the Tick-borne Disease Working Group in Washington D.C. on a study by Stricker, Hodzic, and Embers, where short-term antibiotics failed up to 71% of patients with chronic and late-stage manifestations.

CBC: How are those labs making a diagnosis without testing?

AMMI: So, right, so – there’s a lab in the US erm that has an alternative test that is not recognized by um the medical community and for which we have no evidence in the literature that it actually detects Lyme.  

“Alternative Lab” is definitely not a scientific term, so what lab she is speaking of is not clear.  Most likely she is referring to private Lyme disease testing which includes serological diagnostics based on ELISA and Immunoblot (Western blot) testing. These methodologies are well established and routinely used in Borrelia testing, as well as for the testing of many other diseases. Exactly the same as used in Canada.  

Its funny because for decades the CDC has been saying the blood testing is accurate, yet this year they finally came out stating that you may need several blood tests to detect Lyme.  
But no formal press release to the medical community and I can't find a reference on their website.  Seems to be highly valuable information that should get out there.  What about the hundreds of thousands of doctors and patients that relied on that one test and are now infected?  That was me!  

AMMI: And so, that laboratory when you pay for your test to be sent there will diagnose you with Lyme, whereas it wouldn’t be picked up in and not diagnosed because it's not Lyme in all our laboratory in Canada and in the US.  

No laboratories provide a diagnosis. The test is sent to the doctor, who makes the diagnosis. Payment is simply for the test, not the result. The payment is not altered by the test result and to suggest that people purchase specific test outcomes is a rather malicious suggestion.  

If we are to assume she means the western blot from IGeneX, which many have been known to send to for testing, she should know they are an internationally famous, tick-only lab, with seven laboratory certifications.  I am also assuming she uses the term “alternative” to take away from their credibility. What scientist explains her issues with lab by calling simply it “alternative?
There are so many studies showing the inaccuracies of the testing, but let usnot forget our Provincial Health Minister, our Federal Framework on Lyme Disease, the Centre for Disease Control among a host of medical professionals all now agree with the great level of inaccuracy in our testing.  Isn't it time to stop making erroneous claims about another testing when yours sucks.  

AMMI: What happens though is that some physicians in the US who call themselves Lyme Literate will diagnose patients based on their symptoms saying that they have Post Lyme Syndrome.  The problem is those symptoms are really not specific which means that a ton, you know, a lot of various illnesses can present that way and that’s why there’s confusion there.  And that’s why also when patients are being put on long-term antimicrobials – antibiotics – oftentimes intravenous, erm, there’s no support for that and there’s no way to get that treatment in Canada.

First of all: “Lyme literate” is a general term sufferers use for doctors who were treating Lyme patients and who with the help of current research and clinical experience were developing treatment plans.  Every Lyme Literate doctor and hopefully most doctors know that more research and clinical information is necessary but that is no excuse not to try to help people.
Secondly: the only guidance Canadian doctors are given is no treatment at all.  Would it not be conducive to at least follow what the solutions are in the US because it is curing thousands, including me.  Instead, you just ignore it, do nothing and try to criticize what the “Lyme literate” doctors are doing daily to save lives. 
Thirdly: Post Treatment Lyme Disease is a more common American term because they sometimes get treated for Lyme or a tick bite but it is not adequate enough and the infection presents again.  But what she doesn't acknowledge here is that many Canadians never get treatment at all, like me even though they present symptoms.   So what do you call or blame it on when they get sick after a tick bite, don't get treatment and just get sicker.  
CBC: It seems to me that there is still a disconnect between what patients are experiencing and what the health policy is.  How do we close that gap?

AMMI: I think we need to have better research and I think we would all agree on that.  

So in the meantime, you just neglect patients, ignore doctors who are successfully treating Lyme patients and do not review more recent science than what is in the guidelines from 2006 that you support? Well, that sounds proactive and professional.  

You keep saying there is no evidence of all of these issues but then state more research is needed. If research is lacking then I would suggest it is more than a little negligent to keep stating there is no evidence of these things.  The absence of evidence is not evidence of absence.  I think I learned that in Grade 4 science. 

AMMI: Um what we need is the understand and also um try and find, you know, why these patients are having these symptoms, because they are suffering, I mean we’re not saying that these patients have nothing – on the contrary, if people go to the extent to go to the US and try to find treatment that costs them their retirement savings, it’s because they have something.  Now the question is how do we figure out what is wrong?  

Why not ask the doctors or the patients that go to the US to find help? People are getting help and finding answers, why not start there.  

Of an additional note that AMMI may not be aware of or they would better understand the multitude of symptoms is the fact that rarely is Lyme an infection on its own.  Ticks and other vectors carry many infections and many patients are being diagnosed with more than one infections but many different combinations referred to as co-infections. 

There are far too many studies that suggest reasons for the multitude of symptoms that come along with Lyme.  Not only is it an infection, causing chronic inflammation but it breaks down the immune system leaving someone vulnerable to a host of other issues.  And even more complex is the exact nature of Lyme, which suggests it is more of a multi-system, neurological, post sepsis, OspA driven, immunosuppressive B-cell AIDS.  Some professionals suggest it is the complexity of the illness and the multitude of symptoms that can reveal it is Lyme. 

AMMI: And, um, you’re right, there’s currently a big gap between um patients suffering from um symptoms that are associated with um, that they think are associated with um chronic Lyme, and what is currently being um, accepted as er medically, um scientifically relevant in the literature.  And aside from doing research, and from really, you know, studying patients, making them enter trials, um having Fentanyl clinics????? where these patients could be treated and tested, um I don’t think that there’s a way to, sorry, actually um be able to to to know what’s happening.  

What on earth is the reference to Fentanyl clinics for and the reference to studying patients and having them enter clinical trials? 

If you don't believe we could have Lyme I suggest you read this one recently published study.  If it's all you do to consider the literature that you don't believe exists - read this one study that clearly states after 28 days of antibiotic treatment, Lyme disease was still present in patients.

Or maybe this one:  Let me summarize it for you “we observed evidence of persistent, intact, metabolically-active B. burgdorferi after antibiotic treatment of disseminated infection and showed that persistence may not be reflected by the maintenance of specific antibody production by the host.” 

CBC: On yesterday’s show we…heard that it may be possible to transmit the disease in ways not previously considered or talked about very much at least, namely that the disease may be transferred in the womb or through sexual contact or through mosquitoes.  What is your feeling about that?  Can Lyme Disease be transmitted in the womb, for example?

AMMI: Well then again, there’s no evidence that that is actually um happening. And in fact even in animal models, in mice that were infected with Lyme disease did not transmit it to their offspring.  So there are no animal models to support it and hasn’t been any evidence in the, in humans that that has happened, at least not reported in the literature.  I think that as for everything um we have peer review journals that review articles of from scientists and so as long as that data is not available to the medical literature to us at least there’s no proof that it actually happens, so neither from breast milk or from um through sexual um contact or through mosquito bites.  

I could list many of the articles here but an easier way to do that is to listen to this presentation by Sue Faber an RN who has done countless literature searches on this topic.

The simple fact is there are enough studies to suggest that many other modes of transmission are possible.  Obviously these should be studied further to seek better answers, but to suggest they are simply not possible is completely false and very misleading. 

AMMI: Currently it’s really being transmitted through um Lyme er tick bites; that needs to be attached to the human for at least 36 hours, and so again going back to the prevention piece, you know, the first thing to prevent transmission is we need to make sure that when you are walking into a wooded areas where Lyme um is er transmitted through ticks, to make sure that there are no ticks attached to anyone for more than a day.

Not true - there are several studies that show transmission in less than a day. Some infections spread by ticks can be within an hour.  This misinformation is causing people to assume they are okay and not be treated.  This information is causing thousands to become unnecessarily infected every season. 

CANADIAN GOV’T follows AMMI & AMMI follows IDSA - what a tangled web we weave…

In response to a request from the Federal Health Committee that the inconsistencies in guidelines (i.e IDSA vs. ILADS) be cleared up for patients and doctors, the Federal Minister of Health made it very clear where she sat on the issue by stating “the Canadian Association for Clinical Microbiology and Infectious Disease (AMMI) supports the IDSA guidelines.” 

What she isn't being told or I am sure she would not so confidently state such a fact, is that in February of 2016, the National Guidelines Clearinghouse (NGC, a national database of clinical treatment guidelines) removed the 2006 IDSA guidelines from its database, for failing to comply with federal requirements by not updating its guidelines against the most current science.  The only approved guidelines that exist on the national database are the ILADS guidelines which Canada refuses to follow. 

In reference to the same guidelines that our Health Minister established that we follow, in November 2017, twenty-eight patients across twelve states filed a federal antitrust lawsuit against the Infectious Diseases Society of America, eight health insurance companies, and seven medical doctors, because of the IDSA “bogus guidelines established by their paid consultants, who falsely say the disease can always be cured with a month of antibiotics.

Before that, in 2006, the attorney general at the time, Richard Blumenthal, had filed an antitrust lawsuit against IDSA to determine whether conflicts of interests may have affected the development of IDSAs Lyme disease guidelines. It was the first time antitrust allegations were levied against the developmental process of a medical society’s guidelines.  IDSA, following a settlement with the Connecticut Attorney Generals Office in 2008, agreed to conduct a new review of its guidelines. However, in 2010, IDSA said its review panel found no need to change or update its 2006 Lyme disease guidelines.

I really cannot understand a system that would not look to all science and more recent science as well as all expert information, guidelines and case studies. To insist what was been believed almost two decades ago without any changes, updates or new science is still valid, is completely impossible.  Especially so, when you are talking about a very rapidly, emerging epidemic, there must be more and something new to be done.  

Patients everywhere are screaming that there are potential solutions or at least assistance, but geography, finances, and policy stop them from getting to it.  How is it possible that the top experts in the field can just throw their hands up and say, we don't know what they have, we don't know what can be done but everything anyone else says is wrong. And whats worse is those in areas of responsibility, top levels of government or positions of influence, believe them, repeat what they say without verification and turn a blind eye to the destruction and suffering happening in every inch of our country.  I just don't know how it's possible that this can be happening. 

I think at the end of the day CBC’s questions were never actually answered as are ours in the Lyme world, by these “specialists” in the field.  I think Lori Dennis may have answered the question better with what she writes in her book, Lyme Madness: Chronic Lyme Disease is medically ignored and universally negated, forcing sufferers - for the most part, save for a few heroic doctors - to diagnose, research, treat, and heal themselves.  It’s a do-it-yourself disease.” I think AMMI’s responses in this interview prove Lori Dennis right, without a doubt.  

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