The Grinches Who Steal Christmas

There is a breed of people I will never understand.  They remind me a lot of grinches except for th fact that the grinch never called himself anything but a GRINCH.  These people put on a persona of an expert, a nice person, a professional, but by reading their articles, you can tell they are anything but.  The twisting of facts, the snottiness of tone, the overall dismissiveness of thousands of patients who have info no one else does about this disease, and the callous presentation of a very sensitive subject to many.

I have never said I was anything but a blogger as far as writing credentials.  I am no journalist, but I at least know the ethics code one is supposed to abide by if this is their professional job.

Since the internetz is a thing now, and these articles can be seen for the next however many years, I suggest they start using this code unless they want to live in infamy as a heartless idiot.  Sort of like if there was the internetz many years ago and people who believed smoking was okie dokie (or even GOOD for you) wrote aricles about the people who were saying it was bad for you and how stupid they were; or those who thought you got HIV by touching people, imagine they spread that crap around for people to see FORVER.
I have a page (Idjits) started for these bloggers, “writers,” those with LPIP (Lyme-patient induced psychosis), who have never had Lyme (or if they did, only the minor acute type) but want to tell all Lyme and other TBD patients how to treat their disease, live their lives, think their thoughts because THEY know better.  And if f these patients do not agree, these LPIPs (Lyme-patient induced psychotics) will deem you stupid, scammed, unscientific loons who believe in all manners of crazy things. No matter the LPIPs don’t have any knowledge of how these patients arrived at ther conclusions.

Sure, there may be the odd patient who just goes on whims and doesn’t do any research, but my personal experience with Lyme patients (which these LPIPs don’t have) is that the majority are more knowledgable about their bodies, their symptoms, which doctors are actually listening to them and trying to provide the best care possible no matter what, than any “writer” could possibly be.

The fact these LPIPs are so arrogant to even think the can know more about a person’s decisions, thoughts, validity of symptoms, etc., is all the proof anyone should need that such “writers” are not worth the time it takes to click away from their common-sense-lacking pages.

In no particular order, not including all possible “writers” at these sites:

Sciencebasedmedicine.org Entire Site (Jay Novella)

theness.com Entire Site (Steven Novella)

Medpagetoday: Ivan

Huffington Post: Beth Daley

Healthline: David Heitz

Michael Spector

Lymeneteurope.org

Medscape.com: Steven Luntz

Aldf.com Entire Site (Philly Baker runs this, or did) Tried to pretend they were separate from IDSA and got busted.

realloudoun.wordpress.com (and various other websites with similar name)

Quackwatch.com Entire Site (Steven Barrett operator)

New York Times: Stanley Plotkin

wbur.org Curt Nickisch

news.discovery.com: Emily Sohn

Thedailybest.com: Kent Sepkowitz, Russell Saunders

If You Think YOUR Health Insurance Is Bad …

For most middle-class, full-time workers out there, insurance has gotten more, not less, expensive.  I feel for these people, and I’m not trying to say what they are going through is cool AT ALL.  That should not be happening.

But I want to point out something that is also happening here in the US, has been happening for quite a few years now, and too many just do not know about it.

I have listened to many-a-Lyme-patient-story over the last 5 years.  The below is a typical example, though there are variations and those NOT typical of course.

********************************

Patient starts feeling sick, ignores it until the symptoms get to be too horrendous or too multiple and varied that they just cannot ignore it anymore.  Patient goes to family provider (MD, NP, PA-C, DO, etc.).

Family provider does work-up for various things, lots of lab tests usually.  Everything comes back normal.  Family provider suggests patient is just stressed, depressed, needs to sleep more, exercise more, etc.

Patient repeats steps above until there is an answer, sometimes seeing specialists for more tests, etc.

When they are finally diagnosed with Lyme disease and put on antibiotics, they start feeling better.  Family provider says they cannot prescribe anymore antibiotics because the IDSA Lyme Guidelines say they are now “cured,” but if they still feel sick, they have “Post Treatment Lyme Disease Syndrome.”  And they just have to live with the residual effects, whatever they may be.  (PTLDS was only a guess/theory and doesn’t have any back-up evidence whatsoever by the way).

Even if continuing antibiotics make them feel better, the provider tells them the IDSA (or CDC) says that is probably just a placebo effect.  Memory troubles? Everyone gets those.  Exhaustion? Sleep better.  Insomnia? Here take this medicine.

Even though the antibiotics could be clearing up the underlying cause of the problem, they now want the patient to only take symptomatic medicines.

IF the provider, though, does choose to continue the patient on antibiotics (as they are helping), the provider could face losing their license/fined/bankrupted/etc., and the stated reason is something like “treating outside the guidelines.”

So if this treatment will not be covered by the patient’s insurance, that is similar to what many people (with different diseases) go through.

But Lyme gives you this kick in the gut:  These patients are many times not able to get additional treatment, no matter if they can pay for it up-front, out-of-pocket, all in $20 bills, whatever they want you to do.  The provider cannot prescribe it.

So there’s the patient, extremely ill, provider wanting to help and being told, quite crazily, to stop.  Or else.

Much of this has to do with faulty research, evidence-empty guidelines, vaccination money (that didn’t pan out anyway), terrible ego issues, and insurance companies trying to cut costs.

The power of the insurance companies to not pay (or file charges against these providers) can go away pretty darned fast if the guidelines are thrown out, updated to reflect what the evidence shows, or if providers use ILADS Guidelines instead.

Yes, there are OTHER GUIDELINES for treating Lyme.  Imagine that.

But these days providers don’t want to treat any chronic illness, much less a “controversial” one.

And for those still reading, another huge help would be a better test.  However, this little bug has so many different strains, can change form, is actually really good at hiding from tests, immune systems, medications, you name it– it just isn’t going to come quickly (or cheaply) enough for most patients yet.

So the only way to fight this sort of thing is by information.

One of my favorite sayings “Knowledge Is Power.”  I truly believe that.

So if you do one thing in 2015: Learn about Lyme.  The way this disease is becoming more common (300,000 at least a year in the US alone; that’s over 800 a day, and kids get it A LOT), you will need to know this information anyway.

The science is too far behind to make much of a dent before someone you know gets it.

Need a place with more info? ILADS has a great website– start there!

— Loon Out

Mandatory Vaccines

I only have time to slap this up here quickly on my break from work. Luckily, I do type pretty fast.

Frankly, I am not antivax, as people like to call Lyme advocates.  I simply don’t know enough about all vaccines out there.  I AM anti-mandatory vaccines.  Especially in the work place where it is attached to things like your pay.

The place I work (a healthcare facility) about 2 years ago adopted a mandatory flu vaccine policy.  You can get a medical or religious exemption, but if you do not qualify for those, you either get the vaccine or you don’t get a cost-of-living raise for the year.

That said, the place I work once again proved what an absolutely, above the rest joy to work for as they approved my exemption.  I still would like for them to reconsider their policy, especially as it relates to those who work at home/out of state, but I believe I also covered that when talking to them so it is now in their hands.

I don’t know if I would prefer the nurse/doctor/whatever working with me in the hospital to have/not have the flu vaccine.  But I DO know I would like them to be able to choose and at least show that they took time to go over all the information (not just the CDC’s point of view) and make a professional and personal judgment.

I also would like to see waaay more research on more/fewer cases of flu “spread” as it relates to more/fewer workers in healthcare facilities getting the flu vaccine.  Plus a lot of other research studies relating to effectiveness and harm.  I would like it to be done as blindly as possible and have a panel proven free of conflicts of interest doing the research.

I know that may be asking a lot, but I think this should have been done without even asking years ago.

Gotta get back to my awesome job now!  Seriously.  I don’t think I met one unprofessional, unfriendly, unappreciative, over-and-above helpful person since I started 1-1/2 years ago. And that’s saying a lot these days.

A million times thankful for my job and my co-workers who choose to do it so awesomely well every single day!

-Loon Out

Teach The Crazoversy

Critique of

 

Political Science: Chronic Lyme Disease

Posted by Jann Bellamy on November 13, 2014

Jann says

“New York may soon join a handful of other states who reject science-based guidelines for the treatment of Lyme disease in favor of ideological guidelines based on the vociferous lobbying of patients and “Lyme literate” health care providers. “

If we are going by accuracy, the above statement does not fit the facts.  The IDSA guidelines (which Jann thinks are science-based) have been proven subsequently to be based mostly on opinion and little true evidence.  They also were based in a big way on the Klempner trials, an amazing mash of bad science and over-exaggeration that makes me more likely to believe his wife is Morgan Fairchild than his “results.”

FYI: The Klempner trials were filled with people who already had failed same antibiotic therapy (not intensive as they stated it was) which looks a bit like their usual stacking of the deck.  Also, it was supposed to go on much longer and be tied to (if I am using the right word) the Embers trials (which were delayed over 10 years after Klempner’s results came out).  The Embers trials, by the way, proved persistence.  No.  That’s not suspicious, or unethical, at all.

I believe Jann is talking about the ILADS guidelines (which I do not think she has read) when she talks about ideological guidelines.  I can only assume she has not read the guidelines but instead imagines what they are.  If they are not science based, I would love for her to point it out.  We could actually talk about that.  It’s just weird for a supposed science-based writer to imagine instead of, well, actually read things.

But when you start a conversation with something like the above, it sort of makes a productive discussion about the facts not even possible.

Example.  Imagine if a book critic said the below:

“The Twilight book series is far superior in character development, plot, theme, story structure than the Harry Potter books which are entirely made up of garbage” (but I haven’t read the Harry Potter books).

Besides being entirely wrong (Harry forever baby), can you see how 2 people couldn’t have a rational discussion after a statement like this?  Now, maybe Jann has indeed read the ILADS guidelines, but it doesn’t seem that way.

Next she seems to state the ILADS guidelines are based on “the vociferous lobbying of patients and “Lyme literate” health care providers.” But maybe that is the strange way that sentence is put together.  If she actually read the ILADS guidelines, she would be able to see exactly what they based the guidelines on.

I’m not sure why “Lyme literate” is in quotes.  Surely a provider can be well-versed in a certain disease process, can’t they? It seems like she wants to equate a Lyme specialty provider with something that cannot possibly exist, like “bad bacon.”

Shoot.  Now I’m hungry.

She goes on to say:

“Ignoring science is an unfortunate but well-known legislative phenomenon. I’ve discussed it a number of times on SBM, in the form of Legislative Alchemy, the process by which credulous state legislators turn practitioners of pseudoscience into state-licensed health care professionals, such as naturopaths, chiropractors, homeopaths and acupuncturists.”

Since I am not “legistlative literate” in the sense Jann is talking about, I am not going to comment on this part.  I don’t really have an opinion either way on that statement anyway.

Jann says :

“Lyme disease is an infectious disease transmitted by a tick bite. Its symptoms are a rash, fever, headache and fatigue, although not all symptoms may appear.“ 

Those are some of the symptoms, but certainly not an all-inclusive list and patients have been shown to not always get the rash.  Those are more acute symptoms.  The worse problems usually show up later.  From the CDC’s website: Up to 5% of untreated patients may develop chronic neurological complaints months to years after infection4. These include shooting pains, numbness or tingling in the hands or feet, and problems with short-term memory.”

I’m not sure why the many articles that deny other-than-IDSA-defined-Lyme (aka OTIDL) seem to want to diminish the severity of the disease by only listing a few acute symptoms.

Jann says “ According to the Infectious Diseases Society of America (IDSA):

Lyme disease is diagnosed by medical history, physical exam, and sometimes a blood test. It may take four to six weeks for the human immune system to make antibodies against Borrelia burgdorferi and therefore show up in a positive blood test. That is why patients with the Lyme rash usually have a negative blood test and diagnosis is based on the characteristic appearance of the rash. Patients with other clinical manifestations such as Lyme arthritis will usually have a blood test. Anyone who has symptoms for longer than six weeks and who has never been treated with antibiotics is unlikely to have Lyme disease if the blood test is negative.”

Here she is quoting the IDSA, but the IDSA’s stance on labs here is what she says she does not like:  ideology, not science.

The statement of being unlikely to have Lyme if the blood test is negative?  How in the world did the IDSA jump to that conclusion–The Michael Jordan clause?  There are numerous statements from SCIENCE sources Jann herself would find acceptable that say this is absolutely not true.  So just because the IDSA guideline authors made this amazing leap does not make it true.  It makes it ideology.  Here is the one example:

Johan S Bakken (one of the IDSA Lyme guideline authors) said this in 1997 in the Journal of Clinical Microbiology

“… commercially available FDA-approved kits are only 36% to 70% sensitive; the ELISA assay does not have adequate sensitivity to be part of a two-tiered approach to diagnosis.”

This quote may be older than dirt, but it is just one example.  I am sure Jann and others can find the studies on the specificity/sensitivity of the lab tests.  Not even close enough to be enough for diagnostic status.  All sources say that they can back-up a clinical diagnosis if positive, but negatives never rule it out.

So all of the above Jann is saying is fact, is, in fact, not fact.  Doesn’t this make Jann, in essence, what she is against?  That Lyme is a disease with vague, not too bad symptoms, and it is easy to diagnose 100% of the time.

Not true Jann.

  1. It is proven that Lyme is some of the things above but not all of the things named above.
  2. It is also proven, by the CDC, NIH, the IDSA Lyme guideline authors themselves, and a multitude of other evidence based studies and reviews of lab accuracy – that Lyme can very easily evade detection.

Next on to treatment.  Jann says

Treatment with antibiotics usually eliminates the symptoms, but delayed treatment can result in more serious problems.

“Chronic” Lyme disease (CLD) is not recognized as a disease in the medical community. Its symptoms are, well, pretty much anything. “

I don’t think she is quoting anyone there so we’ll go with it is her opinion.  I cannot say that that has been proven anywhere.  Ever.   There aren’t even enough studies done on all of the aspects of that statement.  So that is not fact.

Maybe she means this: Treatment with antibiotics in the acute phase can eliminate the symptoms.  If that is what she is saying, I could agree with that.

Jann goes on to write:

One description from a post by Harriet Hall:

Lyme is a multi-systemic illness, and may affect every part of the body causing fatigue, stiff neck, headaches, light and sound sensitivity, tinnitus (ringing in the ears), anemia, dizziness, joint and muscle pain, brain fog, tingling, numbness and burning sensations of the extremities, memory and concentration problems, difficulties with sleep (both falling asleep and frequent awakening), chest pain and palpitations and/or psychiatric symptoms like depression and anxiety.”

“Lyme is a …” First of all, it is NOT that, but it CAN BE that.  See the difference a few words make?

 

As Dr. Hall correctly notes, “that pretty much covers everyone.” Mark Crislip, SBM’s very own infectious disease guru, uncovered an evenbroader list of symptoms.

Correctly notes?  Based on what exactly?  More imagining? I had absolutely 0 of those symptoms before I got sick; however, after I got sick (what we can estimate is about 2 years after getting bit) I had almost all of them.

It got the feeling that Jann and Harriet do not exactly have a problem with what the patients are describing but rather that certain providers say that is Lyme, and this gives them leeway to diagnose anyone however they want.  If that is the case, then taking the actual physiology of Bb and twisting it into some nefarious purposes of the doctors treating it is sort of, well, backwards manufactroversial.  I hope I’m saying that right.

Jann:

A new term, Post-treatment Lyme disease syndrome, has been coined for those who had Lyme disease but whose symptoms remain, although there is no good evidence that these symptoms can be attributed to persistent Lyme infection.

 

Stoppin ya right there.  As I (and others) have pointed out before, there is also no good evidence they are NOT attributable to persistent infection.  And indeed there is evidence of persistent infection.  I suppose one can reach really far and say one could find all the spirochetes they want but not be able to prove 100% that is what is causing the problem.  Well let’s say that about all medical findings.  Big tumor in your abdomen?  We don’t know for SURE that is what is causing your abdominal pain though.  I do understand the reasoning behind it—but come on.

 

Jann:  There is no scientific controversy, however, that “chronic Lyme disease,” as applied to patients with nonspecific symptoms who show no objective evidence that they have been infected with Lyme disease, is a fabricated disease.

 

I only take issue with the word “nonspecific” here.  I think she means subjective.  There can be very specific symptoms in Lyme.

But having subjective symptoms does not negate the disease’s existence.  All it does is show the bad-assness  of the organism.  From the beginning by the IDSA’s Allen Steere, it was defined as having subjective symptoms and few objective findings.

Commonly one patient will have so many different symptoms at once and not look as sick on the outside as they may be on the inside.  This makes people glance at you sideways.

And not in a cute way like your dog does.

Jann:

It is these patients who have been victimized by “Lyme literate” doctors and alternative medicine providers. The main treatment for CLD is long-term antibiotics, for which there is no evidence of effectiveness but serious risks. (Also here.)

 

If I had to address each of these links, I’d be here forever.  So I won’t unless asked to specifically.

I take offense at being called a victim.  Yes, some people are gullible, ignorant.  It happens.  Some don’t understand medical things.  Some don’t have common sense.  Some are just sort of stupid.  Some doctors are predatory (in any specialty, not just Lyme).

However, I am no one’s victim thank you very much.  I wasn’t pushed into a diagnosis.  I actually very much doubted it at first because I was not well educated on Lyme’s later stages.   And I live in a CDC-defined severe risk zone for Lyme.  I did not go to what is called an LLMD.  My diagnosing doctor is a private DO who thinks on his own, not what the local hospital administrators tell him to think.

I have been finding that many patients I talk to in Lyme groups are very similar to me.  They are “choosy shoppers” so to speak.  I wouldn’t expect someone who rarely meets Lyme patients to know this though.  However, if a writer is going to characterize a group of people, maybe they should meet them before attributing labels, especially one as bad as “victim.”

 

Jann: As you would expect in cases where a collection of vague symptoms have been bootstrapped into a disease (e.g., chronic candidiasisadrenal fatigue) there are also a number of bogus diagnostic techniques and worthless quack treatments available. (And here too.)

 

I don’t think this is due to vague symptoms.  (I don’t agree with vague symptoms for the most part either).  I think it is due to the fact there is no good diagnostic tool.  Even if a patient goes in with the most common rash, very few ER or PCPs can identify it.   So if one has a problem with quack treatments, I am sure one disagrees with no treatment when one is warranted, right?  Especially in a disease that becomes worse the longer it is untreated.

Jann: The whole idea that the scientific community is somehow ignoring the evidence is nonsensical when you think about it.

Not at all nonsensical.  Happens all the time. Many don’t like to speak out, especially in a research setting, or do research to disprove what others started for fear of not getting published (or funding).  The “scientific community” in this instance, in my interpretation, is really just the few main guideline authors who don’t want to admit they might have made a mistake or were wrong.  They have their names on the research.  Of course they are going to want to sweep such talk under the rug.  The CDC gets behind this because they also did the same, although they tried to cover their butts a bit more.

Here is something that one would think is nonsensical but actually happened.  When interviewed for a newspaper article in 2013, Gary Wormser, one of the IDSA Lyme guideline authors (senior author no less), actually stated and is quoted in the paper as saying “There is no Lyme disease in Georgia.”  Now anyone who has the internets can check the Georgia CDC page and see how many cases were diagnosed as originating in Georgia.  It was not zero.

Doesn’t it make you wonder why someone, who supposedly deals in evidence and is an expert, would say something so easily proven incorrect?  It’s as if reality just doesn’t exist anymore or something; only what he says is true.

Jann: What possible incentive would the IDSA and others have to deny the existence of CLD or reject long-term antibiotic therapy?

When defining CLD as being sick after treatment (PLDS, which itself is a hypothesis, not a proven entity), their reasons for denying this and reject long-term therapy is their reasons alone, and I am not going to try to guess their motivation.  However, when you look at the history of what happened in the research setting, coinciding timing with the guidelines, the vaccine, patents on tests, fees for testimony, it seems that there were a multitude of conflicts of interest going on.  Money.  Biggest incentive of all to many people.

Jann: Infectious disease doctors could make a bundle from treating patients with oral, IM and IV antibiotics, especially if it is fee for service. Of course, doctors who promote these treatments, and provide them, likely make a tidy profit doing so (again, especially if they are fee for service). What do you imagine their incentives are?

I’m not sure I understand the question, but it seems to be: If ID doctors could make so much money treating this, why aren’t they pushing that it exists so they can make hand-over-fist Benjamins?

Well shoot.  How the hell do I know? If I had to take an educated guess, I would say it is because treating Lyme is not easy, not admired, there is very little science about any of it (in relation to the complexity of the organism itself), many patients are not able to pay because they have to decrease their work hours, and medical boards are waiting to take “action” against them.  For starters.

Or maybe they are just ignorant about the whole thing and think most with Lyme are a bunch of fakers, sort of like those who believed the same of those with MS.

Jann: State legislatures fall for the manufactroversy

But never let the lack of controversy among scientists get in the way of a good manufactroversy, as we’ve seen again and again over in theanti-vaccination department of the nation’s wildly successful anti-science movement. After the manufactroversy has poisoned the well, a variation on the “teach the controversy” strategy can be deployed, whereby credulous legislators, convinced that a controversy among scientists actually exists, proceed to legislate the manufactorversy into existence. That turns the manufactroversy into a real controversy, you see, because the law now says the controversy exists. (Just like the law says chiropractic subluxations and acupuncture meridians exist.)

 

I’m not sure I disagree totally with what Jann is saying here.  There certainly has been a comparable tactic used to artfully paint Lyme patients and advocates as anti-science, anti-AIDS, and anti-vaccine with no evidence that is the case. It has worked so well, in fact, that many don’t even take the time to verify facts; they just assume what Lyme advocates/patients say about the disease is cray-cray.  It sure worked for Jann and similar-thinking people who commented on this article.  After all, how many Lyme patients have they met in person, gotten to know, learned the entire story of how they got their diagnosis, etc.?  Have they maybe just been “taught the crazoversy” and were victims of those doing the teaching?

Jann: Lobbying by CLD advocacy groups has resulted in several states passing laws blocking state medical boards from taking action against a physician because he prescribes long-term antibiotic therapy.

 

I’m not sure what problem Jann has with this.  Her problem should be with the medical boards abusing their power.  And not only that, because they are doing this devoid of facts, evidence, or patients actually being hurt, they are putting  the entire process of bringing action against physicians who actually deserve it in jeopardy.

Again–Are we to say that all providers now need to follow all guidelines by the letter or face “action”?  If we do that for Lyme, why shouldn’t we be doing that with all other illnesses?   What about the faults in the science and “expert opinion” based on the flawed science that these guidelines were based on?  Has Jann even read the errors that were found or does she believe it is not flawed?  Does she believe that once a scientific paper has been published it is 100%  true and will never be disproven?  That it can’t possibly have errors in everything from calculating to exaggerating findings?

What if a provider was prescribing (any) medication for a patient, that patient started getting better, but then the doctor stopped prescribing it.  Wouldn’t that be “actionable” as well?

One main problem is that Lyme physicians have action brought against them in ways that other physicians do not.  Providers all over do not follow guidelines to the letter.  They use clinical judgment.  This is what should happen.  But someone somewhere decided that they should take action against physicians treating Lyme.  Why?

Another problem is the IDSA guidelines are awful.  The little science they are based on does not cover every instance (not even close) of what is Lyme disease.  (I mention below about how it is difficult to culture and work with in the lab).  Much of it is expert opinion.  However, can anyone really have much faith in that expert opinion if it is based on flawed science?  (And at least 1 of the “experts” was the one to screw up the science in the first place).

I truly believe the IDSA, if they want any credibility ever, should start over with new Lyme guidelines written by new people.  Not ones whose names are on the studies.  And that’s just for starters.

 

Jann: Currently, Connecticut, Rhode Island, Massachusetts and California all have these laws on their books. In addition, Maine passed a law requiring state health authorities to provide information to the public about Lyme disease from both the Infectious Diseases Society of America and the International Lyme and Associated Diseases Society, the latter of which promotes the validity of CLD diagnosis and the use of long-term antibiotics. Minnesota, Connecticut and Rhode Island require insurers to cover CLD treatment.

Again, the reason they need to protect physicians in the first place is because they were targeted.  I don’t pretend to know the exact reason or motivation, but I don’t believe there was much question it had to do with insurance companies and/or money.  But that’s not the issue.  The whole “protection law” would not be needed if we had a better test.

And why shouldn’t patients get the most information?  If one has an issue with any of the information, show me the information and the issue.

To say that ILADS promotes the validity of CLD diagnoses, again, depends on your definition of CLD.  But putting that aside for now, they definitely do NOT “promote” the use of long-term antibiotics INDISCRIMINATELY (as Jann seems to imply).  This is another reason I think Jann has not read the ILADS new guidelines because this is not something they (or most reasonable advocates) do.

So these states require insurers to cover CLD treatment, right?  Jann doesn’t say how much they are required to cover it.  Or for whom.  I believe the states have different rules, but it doesn’t cover every Lyme patient for their entire illness.  Not even close.   I think it helps very few in practice, but I’m not an expert in the results of these laws.  Maybe she doesn’t know that though.

Rhode Island’s law bears a closer look, as it demonstrates how lobbyists can successfully insert unsupported assumptions into a law. In its preamble, the bill which eventually became law states that:

Physicians whose practices are devoted to treating chronic Lyme disease patients, and who continue to provide treatment if they feel such treatment is medically necessary, have noted significant improvement in the condition of their patients.

As Steve Novella explained, this perceived improvement could well be due to the placebo effect. Or, it is possible that the antibiotics are having an anti-inflammatory or other pharmacological effect that offers symptomatic relief, in which case we should explore treatments that offer these benefits without the risks of long-term antibiotics. Yet the Rhode Island legislature saw the reported benefits (which could also be due to a number of other reasons, such as confirmation bias) as reason to exonerate these physicians, while at the same time ignoring the evidence against the existence of CLD and the use of antibiotics to treat it.

Yes, placebo is possible, but as I have said before, people are not magic.  Wish I was.

This just shows how much “outsiders” do not understand this illness.  If Jann experienced this disease the way many have, she would understand how bad that statement is.  I’m getting a bit tired of trying to explain it.

It is pretty much common sense to say that if one gets better with an antibiotic, one has an infection.  It also has been shown that many of the IDSA’s doses of antibiotics are not enough to actually kill Bb.  This is proven in the Embers study where they don’t have to rely on immune response or people stating what their symptoms are.  They actually opened up those poor monkeys and found it.

Another problem with Bb that the advocates and patients did not create:  Bb is really, really hard to culture in the lab setting.  This makes knowing or proving what it does or does not do even more difficult.  Just putting that out there.

I hope Jann isn’t implying that the reality of Bb is a boon for the cause because Lyme advocates or physicians can say whatever they want without having to prove it.  I can reasonably estimate 99.9% of Lyme physicians/patients would prefer better labs and better hard data on what the hell this little bugger is doing to people and how to treat it.

 

Jann: The preamble also says that “consensus guidelines for diagnosis and treatment of chronic Lyme disease have not been developed.” I don’t know if that was true in 2002, when the law passed, but it certainly isn’t true now. And just because consensus guidelines haven’t been developed, it doesn’t mean “anything goes.”

 

The law goes on to define “Lyme disease” as an infection consistent with the CDC surveillance criteria, but also includes other acute and chronic manifestations of such an infection as determined by the physician. 

 

It does define it as such, I imagine, because the surveillance criteria are not the only criteria on which to base a Lyme diagnosis.  I didn’t think anyone had a problem or question about that.  The criteria for surveillance of any disease would be based on entirely different things and have a much more specific objective list.

The fact that Lyme presents with more subjective symptoms is not because the advocates and patients and LLMDs want it to or say it does, it is because that is what Bb does.  Steere himself said this, remember?  So again; the reality of Bb’s physiology does not mean the physicians or advocates or patients are doing something wrong or that they are wrong in their statements or guidelines.   Nor are they hiding behind it.

 

Jann: In other words, it gave physicians carte blanche to ignore the substantial evidence disconfirming CLD and warning against long-term antibiotic use.

 

I don’t think it does.  Also, I want to see this substantial evidence disconfirming CLD and warning against long-term antibiotic use.  Is that long-term antibiotic use in any disease or just Lyme?  Does it give any voice to the patient to balance/risk ratio?

If you accept that Embers proved persistence, and you have a patient who is bed-bound with all other diagnoses excluded, has a positive ELISA plus 4/5 surveillance bands on the western blot (which per the IDSA guidelines would be 100% negative for Lyme).  And if this patient is doing better when given antibiotics and worse when off of them – are you really going to say that they should not get another course of antibiotics?  How about if they have that 5th band?

How can any physician make a decision in this environment?  My patient is getting better—keep the treatment going.  My patient is getting better, but I must stop the treatment or the board will accuse me of doing something wrong.

These are the types of decisions that LLMDs have to deal with.

Jann’s article from : *****

 

“New York appears poised to join those states protecting “Lyme literate” doctors from prosecution, a position supported by at least one credulous newspaper editorial board. Both the Senate and the Assembly passed just such a bill, which awaits the Governor Cuomo’s signature. He’s indicated he will sign it.

 

Through this part …

I suppose there two outs here for the science-minded. One is that the bill covers only treatments, not diagnoses, perhaps providing some leeway for disciplinary action based on a diagnosis of CLD. The other is the provision in the existing law, which says the treatment must be effective.

All I can say is good luck to the state medical board and the courts in interpreting this one.”

*****

Doesn’t really have much new that I wanted to comment on. The last 2 paragraphs  sort of sum of why I dislike any of this needing to be in legislation in the first place.  I think we just disagree on the true cause of it being there.

Jann: The legislature also passed a resolution asking the CDC, the NIH, and other federal agencies for additional Lyme disease prevention efforts and research. One does wonder, however, if they will pay attention to the research produced. If the legislature is ignoring the medical consensus at this point, what exactly is it that would convince them of their folly? And will they go back and repeal the new law (if it becomes law) if this new research somehow persuades them that the IDSA and other responsible experts are, in fact, correct?

 

One also has to wonder if they produce any evidence at all.  And I agree—will they pay attention to it?  They seem to have totally ignored the errors or any new science to come out in the last few years (if it doesn’t agree with their party line).  Evidence does not play into their song and dance.  The CDC says not to use surveillance criteria to diagnose, but then they say to only use FDA labs and 2-tiered testing to diagnose.  What?

Jann writes:

Blumenthal: still promoting CLD after all these years

As I explained in an earlier post, former Connecticut Attorney General, and now U.S. Senator, Richard Blumenthal:

sued the Infectious Diseases Society of America (IDSA) and the American Academy of Neurology (AAN) for antitrust violations because both groups reached the same conclusion regarding the non-existence of Chronic Lyme disease.
According to Blumenthal, both groups’ reasoning in reaching the same conclusion “at times used strikingly similar language.” He smelled a conspiracy. In his view, the guidelines “improperly ignored or minimized consideration of alternative medical opinion and evidence regarding Chronic Lyme disease.” Apparently, Blumenthal knew so little about science he didn’t realize that when the same evidence is reviewed by two different groups it is perfectly reasonable for them to come to the same conclusion. Nor did he realize that, in reviewing evidence, it is not appropriate to consider any quack theory that comes along, no matter how ludicrous. The irony is obvious: Blumenthal was willing to accept Chronic Lyme disease despite the lack of evidence that it exists. He then turned around and sued the doctors’ groups for relying on good evidence to support their conclusion that it didn’t.

The suit was settled when the IDSA agreed to review its position. That review has now been completed with the IDSA reconfirming its earlier position after another look at the evidence.

 

Sen. Blumenthal remains unrepentant and as far as I know has never acknowledge the IDSA’s confirmation of its earlier position in 2010. At a forum last year hosted by, among others, Sen. Blumenthal, he continued to maintain that there is a legitimate controversy in the medical community and that insurers should cover treatments doctors think is best, noting Connecticut’s insurance mandate. The latter sentiment, if applied to quacks and charlatans and all diseases, real or imagined, could drive us all to bankruptcy with increased premiums.

 

I would have to do more searching than I have time for, but Sen Blumenthal outlined what the IDSA was to do, and the IDSA pretty much said F* THAT! and did what they wanted to do.   Basically breaking the agreement.

However, the fact that Sen Blumenthal has let this whole thing sort of fall by the way side is odd to me.  I don’t know if there is a good reason for it or if he just dropped the entire ball.  If one looks at all the facts and sees a conflict of interest, however, that should be a sign of trouble.  I never thought the people who have money involved should be involved in writing the rules for any disease.  It’s like putting the defendant on the jury.  Why this is even a thing boggles my little mind.

Jann: A similar hostility to the current evidence was displayed by U.S. Rep. Chris Gibson (R-NY), who also spoke at the forum. He is the sponsor of legislation recently passed by the House of Representatives, the “Tick-borne Disease Research Transparency and Accountability Act,” now pending in the Senate. Rep. Gibson accused the CDC of “Lyme illiteracy” and spoke of a “bifurcation in the medical community” concerning Lyme disease.

The House bill may not be a bad idea. It forms a “Lyme and Tick-Borne Disease Working Group” to look into the evidence and make recommendations, although it provides no money for the Group to perform its duties. It requires the inclusion of advocacy groups. The bill also requires that a “diversity” of scientific opinion be represented.

I agree that it is a good idea.  One problem with the process before is there was little transparency or input from experts other than those working in the research lab. Obviously, all need to work together to come up with something that is applicable in practice in physician offices.   The more information, the better the whole process in my opinion.

Jann: As with NY’s effort, however, one wonders exactly what level of evidence would be acceptable to those convinced that their symptoms are due to chronic Lyme disease and that long-term antibiotic therapy is the proper course of treatment.

These are the types of statements I have trouble with.  How are you so sure you are right, Jann?  Imagine, just for a moment you are not.  Do you see how arrogant that is?

The pure blowing off of people as if their brains are made of mud.  Just as those with financial ties should not be involved in the process, neither should those who blindly accept or blindly deny a diagnosis.

Rarely, in my experience, has that been a Lyme patient.  “Outsiders” usually assume Lyme patients don’t know much about anything and were taken in by a cupcake and a smile.  The truth is many Lyme patients know more about their disease than most physicians.  I’m not sure what percentage is convinced long-term or IV antibiotics are the way to go.  I think that is a shrinking population and most want better narrowing down of antibiotics and/or other options entirely.

Jann:Or to Lyme literate doctors who treat them, whose income is jeopardized by further evidence of the lack of safety and effectiveness. “

That statement is just silly.  The fact Lyme diagnoses are going up is not because LLMDs are diagnosing more people on whims (or even simply diagnosing people).  I can’t say if it is a tick population boom, a more stealth strain people cannot shake on their own, the reality of coinfections becoming more common, a combination, or none of these.  But honestly—your average LLMD does not go into this for the money or fame.  In fact, there are so many, many reasons for physicians to not ever treat a Lyme patient much less build a practice doing only that.  The ones who do build a practice around Lyme having a bigger incentive than money is just a matter of logic.

Yes, we have heard about those terrible few apples in the bunch.  But we have also heard of those in other fields, not just Lyme.

Jann: There is clearly a scientific consensus among responsible parties that CLD is not a valid disease and that long-term antibiotic treatment is not only not beneficial, it can be dangerous. What else is necessary to sway the dissenters?

Responsible parties?  What or who are these? How are they defining CLD? Have you done a count or something? How many?  Would it be a fair count when any straying from the party line is investigated? The CDC and IDSA both state it can be a chronic disease so that really doesn’t make sense to me—saying it outright does not exist.

Long-term antibiotic treatment may not be beneficial for all and IV antibiotics can, in rare cases, be dangerous (and not just for Lyme).  Isn’t it up to the patient and physician, though, if the benefits outweigh the risks?  Why not stop all non-essential cosmetic surgeries too?

If there is a consensus, it certainly is because the flawed science and a plethora of expert (many times biased) opinion based on flawed science has been pushed as out and out fact.

*And if you don’t believe it, you’re probably crazy, stupid, or in trouble.*

If one has an objection to a paucity of evidence, why don’t they mention at all (much less refute in a reasonable way) the flawed data?  I come across this time and time again.  How does one have a discussion with someone who has half the story and is railing about evidence and facts?   It’s surreal.

Jann: I don’t think anyone doubts there are people who experience fatigue, joint stiffness, neck pain and the like, but for whom no clear diagnosis exists. Nor does anyone doubt that some medical professionals brusquely dismissed their symptoms. And no one doubts that real Lyme disease exists or that improvements in diagnosis and treatment, as well as research into other tick-borne diseases and prevention, is warranted.

I really don’t understand the above statement.  Do you think that is what makes up the essence of Lyme patients? I can assure you it is not.  Not in my experience (and I have a feeling I have met more than you have simply by that above statement).

These patients are in a much more serious situation than you seem to grasp and have had numerous specialists fail to come up with anything.

But if they have a Lyme specialist clinically diagnose them (as they are supposed to according to the CDC) and at times are CDC positive in their tests for verification, with a complex disease that even the CDC admits is increasingly common, numbering approximately 300,000 a year in the US alone (over 800 a day), that is just too science-fiction for you to wrap your mind around?

Jann: But none of that is an excuse to take advantage patients with a fake diagnosis of “chronic Lyme disease” or treat them with long-term antibiotics and other dubious remedies. Nor is it a valid reason for advocacy groups to browbeat legislators into enshrining CLD into law or for legislators to equate popularity with scientific evidence.

 

There is no excuse, either, to deem patients not worthy of decision-making and put them all in a convenient pile of mindless robots who greedily grasp onto a diagnosis thrown at them by quacks, one that is full of controversy and not much treatment no less, and then get better only by “placebo” when it is in the form of an antibiotic (but so strangely don’t get better when it is given in the form of other medicines).

If you do not like the legislative option, why not place the blame on those who made it a necessity and not those using the possibly final avenue they have?

**Enshrining?  Come on now.  I do like your way with words, Jann, but you didn’t think that was a bit overdoing it?**

If you truly think all that Lyme advocates are winning on popularity (news to me), did you think maybe it could be because this disease is becoming more common, and thus, not what the IDSA says it is (rare)?

If your issue is the lack of evidence, I challenge you give me specifics so we can discuss them while being on the same page rather than behind walls which I suspect were specifically constructed by those who started this whole mess years ago.   If I am wrong, I would like to know about what, specifically.

As opposed to the IDSA Lyme Guideline Authors who, when finding out they made a mistake in the “evidence” they cited for not giving further treatment, did absolutely nothing about it.  The CDC did nothing about it.

They don’t like me because I don’t sound crazy.  The majority of Lyme patients don’t sound crazy.  We may sound peeved off (with good reason), but we have the science behind us.

Did you ever think that may be the one big reason they want you NOT to listen to us?

 

— Loon Out