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It seems like over the past two weeks, every time I turned around, there's a new article about Mitt Romney and chronic Lyme disease.
How much mileage from one topic can the media get? You would think by now they would have moved on, but today
The Day decided it was going to post yet another rehashing about this subject.
Well, if they get to rehash, then so do I. I have some things to say in response to the
Slate's article, "Why Is Romney Campaigning on Medical Quackery?", even though it's not the most recent in this set of offerings.
And again, I'd like to make one request of the media at large:
Can you
please investigate more deeply the issue of people with persisting symptoms after delayed or initial antibiotic treatment for Lyme disease?
And not just spout out the same tired phrase that clinical trials to date have not shown that the use of long term antibiotics has been effective for the treatment of chronic Lyme disease (or what the CDC and other organizations call "Post Lyme Disease Syndrome")?
But I digress...
On to eviscerating the
Slate...
"Let’s play doctor. A patient comes to you with joint pain, difficulty concentrating, anxiety, poor attention, and mood swings. You might run a series of tests to rule out a persistent infection or other disorder. If your patient lives in a tick- and Lyme-disease-infested area, you would be wise to test for the bacterium Borrelia burgdorferi and, if detected, prescribe a course of antibiotics. But suppose the tests come back negative and there is little evidence that your patient was bitten by a tick or was infected with the Lyme disease bacterium. If you are a good doctor, and you are, you might explore a diagnosis of depression, a disease that afflicts almost 10 percent of the population at any given time."
Okay, I'm going to respond to this with, "let's NOT play doctor", because it's not within our training and expertise to give medical advice if we are blogging or writing for online magazines and we are not doctors - or even if we are doctors, and have not actually seen the patient in question before making a diagnosis.
But as we are talking about some hypothetical case here - patient X - and not a real person, then I'm going to use patient X to discuss hypotheticals.
First, joint pain, difficulty concentrating, anxiety, poor attention, and mood swings can be indicative of any of a number of disorders. The doctor is correct to consider different diagnoses, and rule out or rule in anything which may be causing these symptoms. They can be related to some rheumatoid or autoimmune disorder, exposure to certain toxic substances, stress, immunological problems, and other conditions. Patient X may even have more than one condition which is producing these symptoms and need proper diagnosis and treatment.
I would not automatically leap to the conclusion that depression is the disease that is happening - and even so, depression can be a symptom of another underlying condition such as hypothyroidism, hormonal imbalance, or serious vitamin deficiency.
Let's reexamine this portion, and part of the succeeding paragraph:
"But suppose the tests come back negative and there is little evidence that your patient was bitten by a tick or was infected with the Lyme disease bacterium. [...] If you are a doctor who believes that the CDC and NIH have misrepresented carefully vetted clinical trial data about the diagnosis and treatment of Lyme disease, however, you might diagnose your patient with chronic Lyme disease and prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics."
First of all, is clinical trial data about the diagnosis and treatment of Lyme disease the only data on which a medical practitioner should base their diagnosis and treatment of tickborne diseases in a particular individual patient?
The problem is this soundbite doesn't even begin to offer an overview of why a medical practitioner would think that maybe - just maybe - someone with a negative test for Lyme disease might still have Lyme disease. Or how it is that diagnosing Lyme disease can be a difficult task at times for any doctor.
The words chosen that follow - "prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics" - reflect the judgment of the writer on how people with Lyme disease are treated without the writer actually investigating which antibiotics are used at which dosage for how long, nor how long-term antibiotic treatment for Lyme disease compares with long-term antibiotic treatment for other conditions, nor even what happens to those who have Lyme disease who do not receive long-term antibiotic treatment.
The costs and benefits of antibiotic treatment in general are not weighed and shared, so all it can be is a negative description of this treatment without investigating the long term outcomes of case-by-case studies of those patients who are either receiving it or where such treatment has been withheld.
On to another part of the article...
"As a Slate story pointed out years ago, chronic Lyme disease—not the persistent effects of a long-term bacterial infection but a collection of mysterious symptoms—has powerful supporters. Advocates for the diagnosis tend to blame the medical establishment for not taking them seriously enough."
Here I have a problem with this description of the condition, because it's not reflecting reality.
No one seems to really understand entirely what chronic Lyme disease is and what causes it.
No one.The CDC and IDSA have said that Lyme disease cannot become a chronic and persisting infection after a certain minimum allotment of antibiotic treatment, and offer up the hypothesis that any symptoms beyond this treatment are a condition known as Post Lyme Disease Syndrome (PLDS). However, this is a hypothesis, and thus far there are no treatment trials which put this hypothesis to the test.
If this hypothesis is so strongly supported, then why are federally funded treatment trials currently being conducted which are about providing evidence for Lyme disease as a persisting infection? Why is there a study currently recruiting which is entitled, "Searching For Persistence In Infection In Lyme Disease"? And why has another study been conducted in Europe, known as the "Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)"?
This doesn't sound like the issue of what causes chronic Lyme disease's persisting symptoms is settled. If so, treatment trials which address this devastating autoimmune condition would outweigh clinical trials on Lyme disease. If one searches for clinical trials for treating Post Lyme Disease Syndrome, the total sum is
zero.
To add to this, why is it that the researchers who completed the most recent research on persisting Lyme disease infection in non-human primates concluded this at the end of their recent publication, "Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection
"?:
"Our studies do however offer proof of the principle that intact spirochetes can persist in an incidental host comparable to humans, following antibiotic therapy. Additionally, our experiments uncover residual antigen associated with inflammatory foci. Whether persistent spirochetes or spirochetal antigen can cause PTLDS remains unanswered."
That chronic Lyme disease is a mystery is true. That one can readily come to the conclusion that it is not a persistent infection under any circumstances, in any situation, has yet to be established - just as these symptoms being caused an autoimmune condition has yet to be established.
But the content of
Slate's article and that of others is very negative about the hypothesis of persisting infection without any specific evidence to strongly back an alternative explanation - or refute the evidence provided in a study such as Embers et al, above.
To continue...
"In 2008, the attorney general of Connecticut investigated the Infectious Diseases Society of America, a 50-year-old organization with more than 9,000 physician and scientist members, for misrepresenting the science of Lyme disease. Not to be outdone, Virginia Gov. Bob McDonnell assembled a governor’s task force on Lyme disease. He appointed Michael Farris as its chair. Farris is a lawyer and the chancellor of Patrick Henry College, aka God’s Harvard, whose motto is “For Christ and for Liberty” and whose “Statement of Faith” holds that the “Bible in its entirety” is “inerrant.” The school isn’t known for its biology department"
You know, we can argue this one until the cows come home. I honestly am not too keen that politicians are getting involved with medical debates - even though I as a patient want more recognition for my condition and more research for it.
What I want is more recognition from the medical profession, and for there to be programs put in place to help those of us with chronic Lyme disease. And what I really want is for someone with an understanding of the disease who has researched it extensively - and has suffered with it long term themselves - to come forward and represent me and other patients; to work from a desire to find the truth about what is causing our symptoms.
I do not need to see another advisory board, appointed chair, or politician try to defend my condition without a more intimate and thorough understanding of it. And I definitely do not need to see my condition being used in a political free-for-all from any side, from any party or special interest group, in order to try to gain more votes.
I find
Slate's use of pulling out an appointed chair who is not big on science and who oversees a college with a statement of faith which holds the Bible as being infallible as being a diversion from the issue at hand: the issue of whether or not Borrelia
burgdorferi can be a persistent infection.
All we see is an obvious character to take issue with if one is on the side of science and skepticism and wants an easy target to rail against the chronic Lyme disease issue... Of course those who are scientifically minded and skeptics are not going to take the word of an evangelical young earth creationist as being educated about Lyme disease.
On the other hand, if we take one governor and one evangelical chair out of the picture, who do we have left that could have been interviewed instead? How about some scientists, for example? What about Dr. John Aucott of John Hopkins University, Dr. Stephen Barthold of UC Davis, Dr. Monica Embers of Tulane University, Dr. Straubinger, Dr. Brian Fallon of Columbia University, and others who have been studying Borrelia
burgdorferi? They have nothing to lose by being asked for their opinion, being neither in politics, nor making money directly off treating patients, or nor working directly for the IDSA. Why doesn't
Slate ask them about their scientific opinion on the cause of chronic Lyme disease?
But
Slate doesn't do this.
Slate goes for low-hanging fruit to support its diatribe against chronic Lyme disease - with the primary goal of denigrating Romney's attempts to appeal to voter subgroups and to support their characterization of Romney as being anti-science.
The mistake
Slate makes is in conflating Romney's anti-science leanings with chronic Lyme disease as a condition which does not have enough evidence to support it. The two topics are issues which deserve independent examination.
Onward and upward...
"But the task force seems to have bought into the conspiracy theory that the infectious disease establishment is maliciously interfering with proper treatment. It states: “There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.” Again, tell it to the Centers for Disease Control and Prevention."
I am not one of those people who will sit here and spout conspiracy theories. Refer to my page, What To Expect Here, if you have any questions. But there is the issue of oversimplifying and dumbing down the issues involved with properly treating Lyme disease - which is exactly what this article is doing.
It is not true that every case of Lyme disease is sufficiently treated with 30 days or less of antibiotics. Most acute cases are sufficiently treated with 30 days or less, but even when looking at the IDSA's guidelines themselves, they state that up to 10% of all acute Lyme disease patients experience treatment failures. These patients must be retreated and investigated for presence of tickborne coinfections. Also, a certain percentage of patients will have Lyme arthritis, which even Allen Steere treats with two months of oral antibiotics - and if symptoms are still present, a third month of IV antibiotics as well.
I can offer a number of cases where IDSA infectious disease doctors themselves have given individual patients with Lyme disease more than 30 days of antibiotics without thinking too hard, but cannot do so in detail because it would violate HIPAA practices. But these patients are out there, and have been helped by more than 30 days of antibiotics by patients treated by the IDSA's own specialists.
To add to this, there are those outliers with late stage Lyme disease and chronic Lyme disease who do not respond as well to treatment as early acute cases do. These patients have not been studied anywhere near enough, in part because fewer cases in these categories are diagnosed - but also because these patients' conditions are not as well understood or always as easily diagnosed to begin with because the obvious, early acute symptoms like a bull's eye rash are missing.
The Slate article continues...
"Another treatment point is telling: “We received substantial testimony from lay witnesses that they had been successfully treated with long-term antibiotics.” Pro tip: the plural of anecdote is not data. Just because someone signed up to address a public portion of the task force meeting does not mean their understanding or explanation of their own medical care is accurate or relevant."
I've said before that I know that the plural of anecdote is not data. And I understand that someone's own experience of their own medical care is not admissible as treatment for everyone.
But then, I've never made the claim that it was, anywhere... I've only made the statement that I think it is possible
some people might need longer courses of antibiotics than the guidelines suggest are needed. How long, I think depends on the patient and their condition (genetics, underlying conditions, coinfections, etc).
But that is not for me to judge. I'm not a doctor, and we're talking about individual cases here... If IDSA doctors have the clinical leeway to make decisions to treat individual patients with more than 30 days worth of antibiotics and have it be covered by insurance, well, so then do other doctors - including my own primary care physician and someone who calls themselves an LLMD. The keyword in the document they published, after all, is
guidelines.
If that's not happening and insurers are
not covering additional treatment for patients when doctors authorize it, then that's an issue that
Slate and other publications should be investigating.
To continue...
"I don’t mean to make fun of people who are suffering from what they think is chronic Lyme disease. Their symptoms are real, and they deserve help. But giving them a phantom diagnosis and making them part of a crusade to bring truth to medicine just perpetuates the idea that the symptoms they describe must be part of a complex, classic disease."
Look, this is all fine and good to hold this opinion. However, consider that I don't see enough evidence supporting an alternative diagnosis. The CDC, as you've cited, mentions Post Lyme Disease Syndrome. And yet, this is just a hypothesis and it has yet to graduate to being theory.
Just because the outcome of three clinical trials for long term antibiotic treatment on some patients with chronic Lyme disease showed that continued treatment did not permanently alleviate symptoms once treatment stopped does not mean that there isn't a persistent infection present.
And if Post Lyme Disease Syndrome is a genuine condition, with what may very well be its own genuine biomarkers for it - then as its own separate disease complex, it requires its own research arm and treatment for it.
Now
Slate, are you saying PLDS doesn't exist, either, and you're going to flake on this illness which has scientific evidence to back its existence and call it depression?
Of
course - because the next thing out of
Slate's mouth is this:
"It’s much more likely to be depression, and depression is treatable."
Here we go with the depression, again.
Funny you should say this. Because I have had episodic depression. And I will tell you: Episodic depression was a
fucking walk in the park compared to Lyme disease.
There simply is no comparison between the two, other than, well, having Lyme disease has made me feel depressed because it totally changed my life and not for the better.
Why would someone who could work full time at a high paying salary who had lots of friends and opportunity to travel the world a lot give that up to stay at home on the sofa with constant headaches and fatigue and hardly see anyone or go anywhere? To be seriously broke and give up on one's dream of owning a home?
The Lyme disease made me depressed. I don't have depression here as a separate clinical entity all on its own.
And depression, in my experience, never gave me a tick bite, an EM rash, high fevers, swollen lymph nodes, visible joint swelling, paresthesias, and a stocking and glove pattern of neuropathy on my feet.
I challenge you to ask any therapist if they think these symptoms are signs of depression. They'll tell you what they told me: "Your illness is not in your head; you have a genuine physical illness. See a doctor, but see me to deal with the depression that being ill can bring on if you need it."
And seriously... While taking antidepressants can help people with depression, if there is an organic cause for one's depression, such as infection, that needs to be treated first. One only needs to look at cases of psychiatric presentations of Lyme disease - however controversial they are - to at least ask if it isn't a possibility based on the patient's clinical history and limited response to common antidepressants.
Ask those chronic Lyme disease patients who have already taken antidepressants and have seen therapists just how well they have done.
Ask. Quite a number of us have already tried exactly what some doctors suggested we do, when they thought we had depression and that is why we felt as crappy as we have. Either they're wrong, or partly wrong, or the drugs they prescribe us just aren't doing the trick.
Depression. Ha. If it is depression, well, then where are the clinical trials where antidepressants and long term antibiotics are used to treat chronic Lyme disease, so we can see the outcome? How about a third treatment arm with therapy alone? At least you'll give us patients a space of our own to swear at and curse modern medicine for not doing more for us.
There's more...
"As the CDC gently points out, mentioning other diagnoses that have been favorite catch-alls, “Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available."
And no one knows what exactly causes fibromyalgia or chronic fatigue syndrome. Obviously XMRV has been taken off the table as a cause for chronic fatigue syndrome - but some other virus or another agent may be the cause of this condition.
In any case, neither of these conditions have clear etiology, so you could be trading one mystery for another. None of which are well understood. And all of which are treated symptomatically, and all of which the drugs prescribed (with the exception drugs such as Lyrica, which is the first drug specifcally prescribed to treat fibromyalgia - which also has the unfortunate side effect of potentially causing suicidal behavior) are being offered based on an educated guess that they might work and, well, patient anecdote. They're prescribed off-label for these mysterious conditions of unknown etiology.
So how is treating chronic Lyme disease with antibiotics any different in this respect, until more research comes in on how to better treat it? Until we better understand the cause?
It may be that while long term antibiotic use for everyone with persisting symptoms may not hold up in small scale clinical trials that it may hold up in individual situations for particular patients with specific backgrounds - backgrounds which may not have been widely represented in the trials which have been held to date. Often it takes years for a wider population using a given drug or treatment regimen to expose its side effects and benefits - the outcomes are not always obvious at first.
And the last bit from the
Slate:
"Disregarding my own advice about not taking an anecdote as data, I have my own story about chronic Lyme disease. A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself."
I am very sorry for your loss, no matter what the cause. This is the tragic loss of one woman's life, and it may have been prevented.
I don't know, though, and I don't know the full story either way. I only have your anecdote.
She could have had undiagnosed Lyme disease. She could have had depression. She could have had something else entirely. She could have had more than one problem which included depression.
If depression is a concern, I recommend anyone with any illness see a therapist because in many cases therapy is equally as effective as antidepressants. And if that doesn't help, cautiously try out an antidepressant that is neuroprotective if no other biological or organic cause can be found for the depression. But certainly, if one continues to have the same symptoms while on antidepressants and begins an empiric course of antibiotics later and finds those symptoms begin to lift, well, then go with what works and maybe science does not immediately have all the answers. Sometimes symptoms which appear psychiatric in nature can have an infection as their cause.
So, anyway...
Whether or not persistent bacteria is the cause of all or some patients' symptoms, in my opinion, is still up for grabs. And at this point, many patients have either made the decision to ignore the results of the three small clinical trials which have been completed, or beg for more research on treatment to help us, or both.
I am a pro-science, pro-research person with a history of skepticism. I am skeptical about my own damn disease. And yet, no one has given me any particular advice in mainstream medicine or science as to what to do about it.
You might want to send your money directly to UC Davis or Tulane University for private research instead. But don't come kvetching to me that I'm running off to an LLMD because my primary care provider referred me to one.*
That's just more complaining - rather than addressing the root of the problem in the first place. Those of us in pain can only wait so long and do nothing for so long...
* True story.
This work by Camp Other is licensed under a Creative Commons
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There should be a sign on our front door: Enter At Your Own Risk. When good friend offered to drop off dinner this evening, I told her she should leave it at the curb and run away...quickly. Illness has struck our household...and seems to want to stay awhile.
If you've been following along, you know one of my greatest worries has been what to do for our children. They most likely contracted Lyme Disease from me in utero. They both tested positive for Band 41 on the Western Blot Test, which is not Lyme-specific, but is typically the first band to show up in someone with Lyme Disease. 
Today I started Tindamax, used by Lyme-Literate docs as a cyst buster. When Lyme Bacteria dies (thanks to Doxycycline, another antibiotic or herbal remedy), it spins off into a cyst, which can regenerate later. So, you can't just kill the bacteria. You have to 'clean up' with a cyst buster, like Tindamax (or Tindy, as Lymies often refer to it.)` I only take it for three days and I pulse it ever other weekend, so that the 'bugs' (aka Lyme bacteria) don't get wise and hide. The fact that it is only 3 days every other week should also tell you something about it. It's a BEAST. Most doctors have you take it Friday, Saturday and Sunday so that by Monday, you can function...hopefully. 
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