The Proof is in the Puddin’

by Donna Reagan

Hey - have you heard the news? The Infectious Disease Society of America (IDSA) will soon be updating their treatment guidelines for the treatment of Lyme disease! This is so exciting. I wait the unveiling of these new improved guidelines with much anticipation – much like the anticipation that comes from having a root canal, a colonoscopy, or a friend digging out my ingrown toenail with a flathead screwdriver.

Dr. Raphael Stricker, president of the International Lyme & Associated Diseases Society (ILADS) shared his (and his peers’) opinion about the upcoming new guidelines in the July 31st issue of the Hartford Courant News (Hartford, Connecticut - www.courant.com). Dr. Stricker’s comments must have really caused some apprehension within the IDSA ranks, because shortly after Dr. Stricker’s editorial was printed in the Courant, a rebuttal letter was printed by the president of the IDSA, Dr. Martin Blaser.

For your reading enjoyment and edification, Dr. Stricker’s article has been reprinted elsewhere in this issue of the PHA. Dr. Blaser’s article will not be reprinted here as the Public Health Alert is a FREE publication and doesn’t want to waste ink; however, I would like to share some of my thoughts with regards to Dr. Blaser’s rebuttal.

In short, I shall now rebut the rebuttal. With all due respect to Dr. Blaser, his rebuttal is absurd, and rather meaningless to someone suffering with chronic Lyme. I suffer from chronic Lyme so I feel I can freely say this, and just to be clear: Blaser’s rebuttal is absurd and rather meaningless. Blaser began his rebuttal with the assertion that Dr. Stricker’s article is “filled with inaccuracies and misleading information” and that such would only add to the “public’s misunderstanding and unfounded fears about Lyme disease.”

Pardon me for a moment as I must take a second to contend with this irony. Hahahahahaha! Heeheeheeheehee!

It is Blaser’s rebuttal that adds to the confusion and fear about Lyme disease. Blaser belittles the general public with his claims, assuming the general public can not see through his illogical debate tactics. Meanwhile, Blaser manages to send just the tiniest ripple of fear through the Lyme community because we know it is Blaser’s Goliath organization that stands between us and appropriate medical care.

In fact, it is Blaser’s affiliation with this Goliath organization that is his first criticism against ILADS president, Dr. Stricker Blaser contends that the IDSA, touting a membership of 8,000 infectious disease physicians versus ILADS, with its membership of 200 Lyme specialists, is the justification for their ‘rightness’. In other words, right or wrong, Goliath insists upon making the rules, and we must all close our eyes and go with the status quo. Blaser would do well to recognize that power does not equal “right”.

Truth equals right.

This logic may work on the uneducated, but I believe that the uneducated most likely do not read editorial opinions. The uneducated may fall for this kind of so-called reasoning of Blaser’s, however, the truly educated realize that history is full of stories of many “Davids” facing off with the “Goliaths” of their time. History demonstrates several scientists had to battle commonly held beliefs that were inaccurate. At one time hundreds upon hundreds of scientists believed the earth was flat; they believed that the earth was the center of the universe; they believed there was no such thing as chronic syphilis – another spirochetal disease, just like Lyme disease. And guess what? Those thousands of learned men and women were wrong.

Just because IDSA is the Goliath in this situation does not and should not imply that their collective opinion about one of multiple infectious diseases is THE correct opinion. The ‘status quo’ is not always correct, and sometimes David must battle some giants.

Unfortunately for Lyme patients, it is true that ILADS suffers from a smaller membership than IDSA. It would be so much better for the Lyme community were those numbers reversed because even the CDC estimates the 20,000 NEW diagnoses of Lyme disease each year is vastly underreported, and that number is more likely to be 200,000 yearly. This number, of course, does not take into account those unlucky souls whose Lyme disease did not respond to the paltry amount of antibiotics dispensed by the so-called medical professionals who believe they are ‘in the know’ about appropriate Lyme treatment.

Therefore, those 200 members of ILADS must work long hours to provide treatment to the masses of patients that appear at their doorstep desperate for someone to guide them back to health. One of Blaser’s contentions is that ILADS doctors are making a profit from their patients, and it is ILADS members “who(m) have a vested interest in promulgating long-term treatment for Lyme disease because they make their living off such treatment”. Again, I must pause to compose myself and do my best to refrain from laughing at Blaser’s line of reasoning.

First, medicine is business, and for many it is BIG business – period! I can’t imagine many patients arguing with this assertion. The implication that ILADS physicians should not earn a living based on their education, expertise, and service to desperately ill patients is absurd. Is Blaser suggesting that ISDA physicians work pro bono?

Do ILADS members make a living off their life-saving treatment? Yes, of course they do. Do not the heroes of the Lyme community deserve to be compensated for their skills, their determination, and their grit to stand up to their peers and provide appropriate treatment despite the peer pressure to do otherwise? Do not the heroes of the Lyme community deserve to earn a living for themselves and their families? One certainly can not fault the members of ILADS when the Borrelia spirochete (Lyme bacteria) does not respond to one or even two rounds of antibiotics which, as suggested by the IDSA guidelines, are the maximum required treatment.

Perhaps we would be closer to a cure if we had more IDSA scientists looking at ways to truly eradicate this spirochetal infection instead of investing their time trying to prove their superiority based on their size. You know – bigger ain’t always better!

Blaser goes on to assert that the IDSA guidelines are superior because they were developed by “a panel of world-renowned experts in Lyme disease, doctors who are researchers and who regularly treat Lyme disease patients.”

My question is: Who are these so-called “world-renowned experts in Lyme disease”? Who are these doctor/researchers who regularly treat Lyme disease patients, and where oh where are their satisfied patients? As a Lyme disease support group leader, I am bombarded weekly with requests for referrals to Lyme specialists. If the IDSA has world-renowned experts capable of producing happy, satisfied customers – I would like to have their name and contact information so I may forward these desperate patients to physicians who can help them. However, along with contact info – please send references. I need to confirm they are not on a waiting list to see one of those 200 ILADS physicians because the IDSA guidelines did nothing to restore their health.

Blaser contends the IDSA guidelines were created using “stringent rules of evidence-based medicine”. Okey Dokey - so where is the evidence? Again, where are the legions of happy, satisfied IDSA customers? Where are the former Lyme patients who have resumed their lives, now free and clear of any Borrelia spirochetes? And I’m just wondering – how did these great physicians reach the conclusion their research subjects are free and clear of the infection? I ask this because to my understanding, there is currently no test to prove the absence of Borrelia in a person previously infected. There is no test to say the infection is gone – so I remain bumfuzzled about the evidence to which Blaser refers. Is it a secret?

Blaser claims the new guidelines received “rigorous review” by his IDSA peers. Question: What about his ILADS peers? Did the specialists who focus primarily on Lyme disease and its associated diseases every day…did they have an opportunity to review and make recommendations for this material? Or is the IDSA more like a good ol’ boys (and girls) club, full of physicians just looking to pat each other on the back and agree with the common party line, marching lock-step together to appear strong and ‘correct’ by virtue of their professional agreement? Perhaps the IDSA should modify their name to “Infectious Disease STEPFORD Association” to be more reflective of the activities of this great Goliath society.

I wonder if any of these ‘world renowned’ physicians have made peace with the contradiction of their thesis and the fact that science has confirmed that the Borrelia bacteria (the Lyme bacteria) can morph into 3 different forms: the spirochete form; the stealth form (a/k/a the “L” form); and the cyst form. Because of the bacteria’s amazing ability to change its shape/structure based upon its sense of a threat to its existence, physicians have had to adapt treatment in order to out-smart this rather genius organism.

Because of the 3 forms, different classes of antibiotics are required to kill each of the various forms, as not one class or one particular antibiotic has been discovered to be the magic bullet. While penicillins and cephalosporins can kill the spirochetal form, it is not effective against the L form and the cyst form.

The L form is quite an interesting form because it can shed its own cell-wall and hide inside of the host’s cells. In other words, this stealth form is much like one of Star Trek’s famous Romulun alien spaceships with its special cloaking device, which would allow it to hide in plain sight. The L-form of the Lyme bacteria could be hiding in your own immune cells right now – and you and your body wouldn’t even know it. Tetracyclines and erthromycins are the antibiotic classes used to target the L form.

Eradicating the cyst form is perhaps the most difficult, as the cyst form occurs when multiple spirochetes join together to form a hard little spirochetal ‘adult’ party where the spirochetes unite to protect each other from its potential attackers, which is also a convenient time for this efficient, evil little organism to reproduce. In order to bust up and kill the cyst form, the very strong Metronidazole antibiotic is most often used.

Again, because of the complicated nature of this bacteria, several types of antibiotics must be utilized, and several rounds are usually necessary because the bacteria is killed only during the growth phase of the bacteria’s slow, yet mysterious growth cycle.

Much like a Stepford wife would never refuse to disobey a request from her husband, I imagine Stepford physicians would be unwilling to recognize or admit to the ridiculous implausibility that a short course of antibiotics is capable of killing all the various stages of a Borrelia infection. Like a Stepford wife, unable to see flaws caused by her special ‘programming’, perhaps some of these physicians are just too lazy, naïve, or arrogant to honestly examine their assumption that two rounds of antibiotics are sufficient to eradicate all 3 forms of a deeply rooted infection that has been present in the body for an extended period of time.

What I find most interesting about Blaser’s rebuttal to Dr. Raphael Stricker’s thorough article about Lyme disease is that I, a mere lay person, can see the gaping holes in Blaser’s argument. And quite frankly, there are moments when I’m sure I am bordering on being a total idiot myself – most likely because I have some spirochetes playing around and reproducing in my brain tissue. Therefore, I’m just wondering why so-called ‘leaders in the field’ are too naïve to see this as well. However, I’m quite sure if any of said ‘world-renowned’ members of the IDSA or their immediate family were to acquire this vile disease, the membership of ILADS would begin to soar.

It’s hard for me to believe these scientists are incapable of understanding something so basic and rudimentary, therefore, I must conclude it is they who have an agenda to keep Lyme disease on the ‘down low’. So just what exactly is it? Like many issues, conspiracy theories abound. With some of the outrageous behavior and official comments made by these “scientists”, it makes one wonder if any of the conspiracy theories might indeed have a ring of truth to them. What exactly are we, the people, NOT supposed to understand? What are the ‘scientists’ afraid that we will discover?

Blaser’s claim that “no credible scientific evidence that the disease persists after appropriate antibiotic treatment indicated in the IDSA guidelines” is quite a clever, yet daring statement considering most Lyme disease patients and Lyme-literate physicians know there is NO scientific evidence to prove the assertion made by IDSA – that the disease is forever absent. In other words, there is no proof the disease is eradicated after the IDSA’s paltry recommendation for a limited amount of antibiotics.

Just because Elvis was no longer center stage did not necessarily indicate that he, had indeed, left the building! In fact, even when the announcer made that famous declaration, the announcement did not necessarily make it truth. That level of assumption is for the benefit of the average simpleton. Shame on Blaser for assuming those in the Lyme community, while battling a bona fide brain infection, were automatically incapable of understanding ill-formed conclusions. Shame on Blaser for not realizing that because of the lack of understanding within the medical community, patients have had to take it upon themselves to learn everything they can about their disease process, otherwise their lives would be in jeopardy from the ludicrous protocols presented by the IDSA, and even our own governmental beast referred to as the Centers for Disease Control.

Another one of Blaser’s claims, based on ONE so-called scientific study, indicated that the majority of patients previously diagnosed with chronic Lyme had indeed been found to have conditions other than Lyme disease and that their misdiagnosis caused a delay in helpful treatment. As a patient suffering daily with chronic Lyme, I find the outcome of this ONE so-called scientific study to be quite suspicious. I wonder just where and by what criteria they selected their test subjects. No matter, as that ONE socalled scientific study does nothing to sway my belief in the fact that the misdiagnoses are actually occurring the other way around.

Prior to my diagnosis with chronic Lyme, I had been tested for numerous diseases – mostly auto-immune disorders in which the outcome was either negative or inconclusive. As a patient with no diagnosis, I can tell you my frustration was sometimes as great as my fear because I had no physician capable of telling me why I was experiencing the slew of symptoms I experienced on a daily basis. Finally, after several years, I was fortunate to encounter a physician that was familiar with the symptomology of Lyme disease. Because Lyme disease (according to the CDC’s own website) is a clinical diagnosis, my physician could quite easily diagnose me with chronic late-stage Lyme disease. In an attempt to confirm the diagnosis, my doctor sent my blood samples to a lab which specializes in identifying the serologic (blood) markers for various tick-borne diseases. Igenex Labs located in Palo Alto, California, is by far the best lab to validate a diagnosis of Lyme disease.

And sure enough – my diagnosis was and remains chronic, late-stage Lyme disease. What I find quite ironic is the following scenario: Due to my varying daily and weekly symptoms, I could return to the various specialists from my past, who depending upon their preconceived biases toward their own respective medical specialty, could just as easily diagnose me with Multiple Sclerosis, Lupus, Parkinson’s disease, and early Alzheimer’s disease.

Now – forgive me if I sound a bit sassy, but what is the likelihood of me being simultaneously diagnosed with 4 serious diseases based on my variety of symptoms? CHRONIC Lyme disease is the only thing that makes sense. But common sense apparently does not compute to these 8,000 members of the IDSA. Perhaps they did not cover ‘common sense’ in their medical school classes?

Blaser’s rebuttal letter speaks quite confidently of a ‘vast majority of cases’ that are successfully treated with two courses of antibiotics. But as a Lyme ‘case’ myself, I want to know to which cases is he referring? I hate to admit my lapse in retaining scientific statistics; however, if and only if Blaser is referring to patients who are diagnosed and treated rather quickly following the tick bite, perhaps his assertion is plausible.

The ‘brand new’ cases of Lyme disease, treated promptly and appropriately have a high success rate for recovery. However, it is the patients who go months and even years without being diagnosed or treated properly who muddy up Blaser’s statistical assertions. As a simple analogy – most everyone could agree that a wet, muddy shovel is so much easier to clean if the cleaning is done before the mud has had an opportunity to dry hard. Imagine, if you will, that said shovel is covered in magic mud capable of reproducing itself causing layer upon layer of mud to cake up on the shovel. It would then be quite reasonable to assume that while both shovels are indeed muddy, the cleaning time will be vastly different for each.

This simple analogy is intended to help the lay person understand that the greater the bacterial load, the longer the amount of time the bacteria has been allowed to proliferate and establish a foothold in a the body, the longer treatment should be expected. Perhaps this analogy may help some of those IDSA folks too? To conclude my little analogy - two minutes of rinsing a shovel with layers of dried, caked-on mud and two weeks of antibiotics to treat a vastly entrenched bacterial infection are highly inadequate and stupid. Have I mentioned stupid yet?

Blaser claims few patients have symptoms after the treatment course recommended by the IDSA, and in addition, the ILADS treatment guidelines may promote “the development of drug-resistant ‘superbugs.’” The position taken by Goliath is that after the 2nd round of antibiotic therapy, a patient still suffering from the exact same or worse symptoms is re-evaluated and given a new diagnosis of “Post Lyme Syndrome”. Keeping in mind there are NO tests to validate one way or the other if the Borrelia bacteria (the Lyme disease) is gone, and remembering that even according to the CDC Lyme disease is a clinical diagnosis (based on symptoms, history, examination), we must now disregard the obvious understanding that the bacteria is still present simply because the 8,000 automatons have rubber-stamped their official ‘line’, and no matter how ridiculous it may appear to the lay person or other health professionals – it is now called “Post Lyme Syndrome”. With all due respect to Goliath… that’s just plain stupid. Hey – can somebody pitch me a slingshot?

As far as the seed of fear Blaser intended to plant with his manipulative ‘superbug’ claim – all I can say is that it’s difficult to be afraid of a potential hurricane when you’re busy drowning in your own bathtub. Finally, Blaser encourages those diagnosed with chronic Lyme to seek a second opinion, and asserts that the IDSA guidelines are the best science has to offer. I don’t know whether to laugh or cry first. For the uninformed, most individuals diagnosed with chronic Lyme disease have had from ten to forty “2nd opinions” prior to finding a doctor that could give an accurate “1st opinion” and make sense of the litany of symptoms endured by the chronic Lyme patient. As for the ‘best that science has to offer,’ that thought makes me almost moisten my Depends! What a scary, outrageous thought to think the IDSA’s guidelines for Lyme disease are the absolute BEST science has to offer!

There’s a little saying I grew up hearing: “The proof is in the pudding.” I understand that to mean that if something is true and real it will become obvious by results seen and/or experienced. Copernicus, Christopher Columbus, and hundreds of other scientists, researchers, and physicians have had to stand up to the Goliaths of their time in their quest to find and experience truth. Those honorable and fearless “Davids” who found their “proof” are the shining examples for the physicians – the Lyme specialists – who currently find themselves in the minority.

Just as David, clothed in the armor of truth, honor, courage and righteousness, walked out to meet the much bigger Goliath all decked out in the finest armor money could buy, today’s Lyme specialists depend on their faith, their brains and hearts to fight a seemingly impossible battle. Most importantly though, like David, our Lyme specialists know they have truth on their side, which in the end led to victory for David and which will most assuredly result in the long awaited victory for the thousands of silent warriors struggling daily with the ravages of their Goliath – Lyme disease.

To those warriors within the Lyme community, to the 200+ members of ILADS, I extend my most sincere gratitude. For those in the “Stepford” community – to Dr. Martin Blaser and his 8,000 member IDSA, I gently and respectfully remind: “The proof is in the pudding.”

Hey Blaser – SHOW ME THE PUDDIN’ !