May is Lyme Disease Awareness Month
Lyme is one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
Lime Disease Awareness will be eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us in learning about this rampant disease and the medical/industrial/political morass in which Lyme patients find themselves.
We open with a passionate, personal plea for recognizing both the plight of Lyme patients and the help they need.
Today's diary is by UnaSpenser
A friend pointed me to a comment string in a recent diary. As many of you know, because you so graciously helped me recently, I still suffer from Lyme Disease after being treated with antibiotics. I found that thread very disturbing. So, my response to the idea that Chronic Lyme can't exist because the IDSA says so will be very emotional. Emotion does not negate reason. I'm more than capable of having clear thought processes while expressing highly-charged emotions. I'm a wounded animal, but not a prey animal such as a rabbit. I'm something more like a savanna lioness, who, even when harmed, is not completely defenseless.
Be forewarned, I've recently learned that my heart is now being affected by Lyme disease. I've acquired dysautonomia, which means that the autonomic system is sending bad information to the heart, so the heart beat doesn't match what is needed for the given context and it can just stop. (People do die from Lyme Disease.) I've seen plenty of docs and at this point they all agree as to the cause and we know the needed treatment. Only, it's expensive and I can't get it covered by insurance. Why? Because the insurance industry is perfectly comfortable allowing the viewpoint of Lyme-denying doctors to be their excuse for saving money at the cost of lives.
If you're timid about engaging with a mother who is facing the possibility of imminent mortality, this could be uncomfortable. Not that I'd make you uncomfortable, but you will likely see me get "attacked" for having a perspective on the science of Lyme that isn't based in worship at the precious altar of the medical industry.
So, here we go:
For two years, I was tested for everything on the planet, because the Lyme test I requested when I first went to a doctor came back "negative". After failing to explain my severe neurological symptoms, including daily seizures, loss of sight, inability to walk, memory problems, fogginess, disorientation, and more, I learned that the screening test for Lyme has, at least, a 35% false negative rate. That is, 35% of the people who get negative results, actually do have Lyme. I requested further testing and when I couldn't get it covered by my insurance, we paid a doctor out of pocket to do so. (It cost over $1,000 to do so.) I had an equivocal ELISA and definitive positive on the Western Blot. (never saw a rash or a tick bite.) Indeed, I had Lyme. Now I had Late Disseminated Lyme due to a delayed diagnosis with Late Neuropsychiatric symptoms. (keep reading down the page of the link earlier in the sentence)
I was put on antibiotics. I couldn't tolerate them orally. After six months of being deathly ill and losing a lot of weight, I was switched to an intramuscular antibiotic. For a while, I had some cognitive improvement. I still have far fewer seizures. I've been on that for a year. Still, I'm getting worse and my most recent test for Lyme was EVEN MORE POSITIVE (more bands with higher readings.) I meet and have met the most narrow criteria for a Lyme diagnosis.
I still don't test positive for anything else. Try as the docs might to explain my symptoms with something else, the only thing I test positive for is Lyme.
Clearly, Lyme can survive antibiotics. If my story is "too anecdotal" for you, the study "Persistence of Borrelia burgdorferi following antibiotic treatment in mice" (Feng, Holden, Freet, Barthold) makes it clear. (I put the anecdotal reference in quotes, because there are many who denigrate the use of anecdotal reference. Yet, it is anecdotal data that leads to further research. And sometimes, just one anecdote sparks an "aha" that leads to greater understanding.)
I think it's perfectly valid to search for better options than long-term antibiotics (I'm not a fan of them and hadn't taken an antibiotic for about 15 years before being diagnosed with Lyme) but many patients are experiencing relief by taking them. Many are, after a long-term treatment, returned to health. Until you can provide a better treatment, what is the point of denying this to patients? And what does it serve anyone to deny that patients are experiencing chronic illness after contracting Lyme?
In the comment thread linked to above, one of the first things mentioned is a reference to the "infectious disease society." I want to scream when I see people use them as a reference. If someone wants to claim the high ground on scientific thinking this:
Connecticut Attorney General's Office
Press Release
Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter
May 1, 2008
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
should stop them from referencing the IDSA. Not clear enough for you that the IDSA guideline process was seriously corrupted? Read on:
"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.
Yes, financial interests and ignoring or minimizing alternative medical opinion. There's scientific purity for you.
Want to know what kinds of conflicts of interest they had?
The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.
Folks, those extracts aren't the rantings of some upset patient or family member. They're not the offhand opinion of some fly-by-night blogger. These are the findings of an investigation by an Attorney General's office, capitulated to by IDSA, itself. Read the whole thing. It is specific about some of the ways in which they suppressed dissenting opinion.
These doctors, who were disseminating guidelines used by insurance companies for covering or denying claims, were consulting to the very same insurance companies. As for-profit entities, insurance companies are mandated by law to do all they can to maximize shareholder profits. That means minimizing costs. So, these docs were helping insurance companies who need to find as many ways possible to deny claims as they can.
These doctors who were determining which tests could be considered valid for diagnoses had financial interests in labs and testing kits. Can you corrupt the process any more than that? The AG's findings are pretty damning. Why aren't their actions considered criminal? I understand that the IDSA is bigger than just the Lyme panel and that this is why the IDSA itself was able to negotiate a resolution on how to resolve the conflicts rather than be shut down. Also, it wasn't that all the doctors on the panel were corrupt. There were some heartily trying to keep the process in line with appropriate standards. Still, the individuals who are guilty of corrupting a process that affects people's lives should be in jail.
Yet, doctors, claiming the high and mighty soapbox of "The Science" will actually defer to guidelines corrupted by those charlatans?
From the moment anyone uses the IDSA guidelines as proof of their stance regarding Lyme disease, I stop listening. I also don't buy houses built on sand.
Look, the body of research on Lyme is by no means definitive. Particularly around effective treatment. Not enough research has been done. Not enough is funded. Not enough is published. We all know that the road to funding and publication is not paved by angels. There are, however, hundreds of studies regarding the persistence of Lyme, here's a link to about 70 of them. (that link takes you to a page with a .pdf file of study summaries)
You can't tell me that the medical world is untainted by the profit motive. You can't tell me that there is absolutely no way that the research that has been funded and/or released and/or accepted by journals has never been skewed due to less than honorable motives. We've seen this before. Just look at the history of AIDS. Or ulcers, for goodness' sake.
So, get off your holier than thou platform about "The Science". Science has so often been shown to be lacking, wrong and even corrupt. While you're holding your ground defending the IDSA guidelines (and ignoring ILADS, LDA, the AAPS, and so many others) people are suffering. People like me, who have discovered that their heart is affected, are in grave fear. People have died and are dying. We need doctors to do and try anything they can think of to help us. We need to know that they aren't threatened by insurance companies and medical boards when they do. We need medical assistance, not political and corporate battles. We need a medical community that can admit when it doesn't have the answers and may even be wrong.
Yes, you could be wrong. What must it be like to be a doctor who has told patients they are crazy? Who has denied them treatment and knows that they have suffered enormously? What if they've died? It's a hell of a lot of responsibility that docs take on. The potential for overwhelming guilt is extremely high. Thus, one can see why you need to have a pretty strong ego to be able to do the work at all. What is it like when you find out that you were wrong. That if you'd helped that patient early on, she might have a life? I can see how one might build huge defensive walls against this possibility.
Get over it. You could be wrong. Until there is definitive understanding of all we need to know about this devilishly ingenious little spirochete, quit shouting down docs who are trying to help. Quit telling patients they're crazy. Quit helping insurance companies save a buck by destroying a life.
Quit saying it's not possible for Lyme to be chronic. Whether you were mis-educated, are feeling guilty about past patients, or have another incentive for denying it, Lyme can be persistent. I dare you to come to my grave and look my daughter in the eye, as she holds all the papers showing that I wasn't positive for anything but Lyme, while she watches her mother's body get lowered into the ground because the insurance company wouldn't pay for her treatment based on voices like yours that said I should be just fine after a few weeks of antibiotics, because Lyme can't persist. And when she asks, "would it have hurt my mom to give her the treatment?" You go ahead and tell that the insurance company did the right thing denying it.
When you do, my ghost just might rise up and show you a special place that could be waiting for you where you think you've escaped The Inferno and arrived at a hospital for burn treatment, but your insurance company denies that eternal flames lead cause burns because those docs on the IISH (Inflammable Injury Society of Hades) who happen to have stock in HELL (Hades Eternal Limited Liability, Inc) want to avoid costs, and have declared it so, preventing you from receiving any attempts at relief.
You are killing me. Literally. Please open your mind and look into the body of research demonstrating the persistence of Lyme. Please support research into better treatments for Lyme patients. Please support legislation giving doctors back the right to determine treatment on an individual basis. Please work to take the corrupting profit motive out the health insurance industry. Please tell my daughter that her mother might get a chance to survive this.