Tech-i-nical Difficulties

Please forgive me being so slow to follow up. The short of it is this: while there is an experience to relate, the treatment went well enough that it was deemed I could continue. However, since then I have felt as though a truck ran me over.

I had two small social things to host this weekend and it was all I could do to appear functional and tolerate the stimulation. Sunday morning I lay in bed for hours unable to move. The full body pain was intense, as if everything had simply seized up into one giant cramp.

A little better today.

Will write more soon.

Thank you for your patience.

Treatment: Day 1 pt 1

I thought I might be able to "live-blog" yesterday, but it didn't work out that way. With all the time in the car (3 hrs each way), I needed to know how to post from my phone and I hadn't looked into that. As it turned out, I wasn't able to do much while sitting for the 4 hours of the infusion, either. So, I offer this report after a good night's sleep:

It was a fairly uneventful 3+ hour drive down. We did run into some traffic on The Turnpike and had to call to let the clinic know we would be late. No big deal. As is usual for me, these days, I was disoriented most of the time. Before we even got to the highway, I was asking, "Where are we?!" After 5 years, this is still disturbing to me. I used to be so good at navigation. Just one more reason to appreciate my iPhone. (a recent acquisition, so I'm still in the honeymoon phase with it.)

I had been told that I needed to be well-hydrated with electrolytes, so we had a couple of big bottles of Recharge on hand and a bag of sea-salted chips. I was also told that I could eat during the transfusion, so we stopped and picked up lunch at Rein's Deli, our favorite stop anytime we're heading south on I-84. As a ex-New Yorker, I miss the delis in Manhattan and Reins offers me a moment of 'saudade'. (wow. what *isn't* on the internet any more?! I can give a link to explain 'saudade', that's awesome.) While I'll often indulge in a Reuben, yesterday I got an egg salad sandwich. Yum.

I wasn't in the mood to talk much. Early mornings are really difficult for me and getting in the car with the roaring of the tires, all the sounds of traffic, the morning sun burning my eyes, etc leaves me very unsociable. Add to that the anticipation and anxieties of heading to a first intravenous treatment and I was downright curmudgeonly with not the slightest amount of grace about getting the worst cup of tea. Ever. (ya know, tea won't steep if you put the cream in right way?! and it really won't be palatable if its only lukewarm to begin with. ugh. sigh. Yes, I still adore Rein's but they need a tea education.) I buried my self in a fantasy book. (I'm not sure how I feel about starting a story with at least 13 volumes. Will I feel unsatisfied with such a long term of incompletion? Or will I enjoy having this world to be absorbed in? Sometimes, I actually grieve a little when I finish a book or a series, having loved the experience and the characters I'd been drawn into.)

We arrived at about 11:20 for an 11:00 appointment and were told it would be another 15 minutes. I love my doctor and I admire that everyone working there seems to be in good spirits and enjoying their work. I can't stand the new offices, particularly the waiting room. Buzzing green fluorescent lights, tight space with video arcade machine and wide screen TV, a door that slams shut when not closed with care and the receptionist window which slides on ball bearings to make a sound which feels like your brain is being ripped open with a zipper pull. I have to manage the growing rage that comes with the ongoing sensory onslaught. You'd think a neurologist would have more sensitivity to this. I do realize that as a doctor who has opted out of the insurance game and is doing all he can to treat patients in desperate need, that he likely can't afford opulent office space and is keeping his overhead costs down. That's the rational part of me, appreciating his devotion and sense of mission. My lizard brain doesn't process it that way.

I brought knitting, but couldn't really focus on what needed to be done next because it required some thinking and planning, so I just wove in ends. There were plenty of ends to weave in and that's a tedious task, so this was a good use of that time.

"That time" was considerably more than 15 minutes. I was finally called back into the infusion room at about 12:30.

Things were lively, nearly hectic, in the infusion suite. Two people were already in the room filled with reclining chairs. Each with their own satellite tower holding their personal container of fluid, connected to them via long, supple tubing. Another woman was getting a 'midline' installed and receiving her operating instructions and being oriented about what to expect when the nurse comes to her house once a week. She was cheerful, but clearly a bit anxious and seemed overwhelmed. I'd be overwhelmed, too. They handed her a box that was about 30" cubed full of supplies which have to be refrigerated. If I had to put all that in my fridge, there'd be no room for food. We joked about the infusion diet, but you could tell hers was nervous laughter.

I waited for the nurse to finish up with her and to prepare my setup. I was informed that it was standard practice to give the patient Tylenol and Benadryl before an immunoglobulin infusion. There was concern that my system is very sensitive. The two nurses talked to each other about what to do and then one of them went to talk to the doctor. It was decided that I would have Claritin, instead of Benadryl. I've never taken either, as I don't recall ever using an antihistamine, so I have no idea why Claritin would be better than Benadryl. I simply complied and swallowed.

At Least They Published This

Before I continue critiquing news articles that fraught with journalistic fail, I'd like to acknowledge that after printing one of these articles, the Star Tribune in Minneapolis/St. Paul did, at least, print this follow-up opinion piece:

Elizabeth Maloney: We've much to learn about Lyme disease

Given that Dr. Maloney opens with a rather scathing criticism of the paper itself, I give kudos to them for having the forthrightness to publish it:

The April 12 article about the resolution passed by the Minnesota Board of Medical Practice ("Activists and doctors divided over Lyme disease treatment") brought many questions to mind, including: "When did the Star Tribune morph into Fox News?" The article used buzzwords and themes known to inflame physicians, and it misled readers regarding the professional credentials and capabilities of physicians who recognize that persistent/chronic Lyme exists.

One of my main criticisms of the journalism surrounding Lyme Disease is exactly what she points out here: all too often, proponents of the Infectious Disease Society of America (IDSA) and their "guidelines" are presented as the only ones who have professional credentials and the prestige of a legitimate medical association behind them. Those who recognize the persistence of the disease are presented as "Lymies" who are not professional, or, if they actually quote a doctor, the impression is given that this is a rogue outlier and they are not linked to the larger association of medical professionals who recognize this truth: the International Lyme and Associated Diseases Society. Any reader who is not already educated on the subject is likely to discount the word of a "Lymie", don't you think?

I'm not sure why the Star Tribune has taken a step in the right direction by publishing Dr. Maloney's piece. I would like to think that their own sense of integrity was intact. Perhaps, it is. Perhaps, they got enough letters and comments from people after their April 12th piece that they felt compelled to publish it. If they really wanted to do the right thing, though, they'd do a more well-researched, in depth news piece that gives the public a more serious look at the issue.

We're talking about a topic that effects the lives of tens of thousands, perhaps hundreds of thousands, or people. If the news industry is really interested in doing the public a service, perhaps they could begin by focusing on one question: how is it that after the IDSA has been shown to have had major conflicts of interest -  that is, ethical issues -  it was allowed to essentially police itself, hire a past president of the IDSA to chair the policing, and then violate the terms of the antitrust settlement which set the rules for the policing? When do we stop seeing them as a credible source of information and strip away their rights to authority? When do we start talking about them as the "Lyme Deniers"? How blatant does someone's lack of integrity have to be?

It doesn't take much digging to see what's gone on behind the scenes regarding Lyme Disease. There are books on the subject. One by an acclaimed science journalist: "Cure Unknown". Others laying out the history, too, such as "Beating Lyme".

So, I applaud the Star Tribune for publishing Dr. Maloney's opinion piece. Still, it doesn't carry the same weight as a news piece. It doesn't begin to help the public see that we have one more case in this country of anointing someone one or some group with authority, which has been abused. That it is up to us, to stand up to that abuse and to stop allowing folks with serious integrity issues to rule the day.

Can't Focus. Tomorrow is Big.

I had planned to post a review of a piece that the Minnesota Public Radio posted on its site yesterday. I've begun the draft, but I can't focus.

Then the IDSA announced that their review committee (that one where those folks who are accused of ethics violations get to oversee the review of themselves and then violate the antitrust agreement which outlined the voting procedure of the review.  You know, that one.) has voted to make zero changes to their guidelines. That warrants a significant response. But, I can't focus.

Tomorrow I start my Intravenous Immunoglobulin (IvIg) treatment.

That seems like a simple statement, right?

Yet, there is so much packed in there. I first went to a doctor because I was feeling "poisoned" all the time in 2005.

I have a plethora of emotions and myriad questions. I'm ecstatic and anxious and hopeful and cynical. Will I tolerate it? Will it work? How long will it take? What will it be like to be well again? Will my daughter like who I am when I'm healthy? What will I pursue to earn a living when I regain my health? What if it doesn't work? How depressed will I get?

Can I knit for the 4 hours the Iv line is in my arm? Can I walk around? Can I eat? Will it be cold? Or hot? Will it wear me out or energize me? Will my symptoms get worse before they get better?

Will I be able to perform on the violin?

Okay. Old joke.

So, what does any erstwhile compulsive personality do when she's feeling so overwhelmed? She organizes her sock and underwear drawers. Oh yeah.

I think I've done other stuff today. Not sure, though. I'm nursing a big headache and nausea over sounds or making an effort to think or trying to have a conversation. Very strong burning all over my skin. Worst on my ankles and lower legs. Non-stop yawning. Walking the dog nor caffeinated tea helped.

So, I think I'm checking out for the eve.

Hmmm. Maybe I'll liveblog my treatment.....

Journalistic Fail: Look Through the Keyhole!

Today, the Washington Post has a piece about Lyme Disease in their health section: "Ticked Off Lymies Challenge Experts", by Maura Lerner

Synopsis:
A woman who was treated with a short course of antibiotics for Lyme Disease, was devastated three months later when her entire body went numb and she was diagnosed with MS. She learned about the possibility of treating her condition as Lyme Disease, did a 14 month course of antibiotics and recovered her health.

An infectious disease specialist from the Infectious Disease Society's (IDSA) Lyme Disease Panel in 2006, says that politicians are practicing medicine by passing legislation related to Lyme. He says this woman's treatment "makes no sense" and that the long-term use of antibiotics is dangerous, as there is no evidence it works.

A second doctor, a family practitioner, says the antibiotic question is not proven one way or another and you have to do something for people who are still suffering after a short-term treatment.

A third doctor, another infectious disease specialist, says that many of these people who claim to have Lyme don't have it.

Finally, the patient in the story says she doesn't care about their medical debates, she knows she had Lyme and she knows the treatment worked for her.


Review:
Quoting members of the IDSA:
I'm glad to see that Ms. Lerner at least mentioned the anti-trust investigation against the IDSA's 2006 panel. It is a vast improvement over quoting them as the experts without mentioning this at all.
Still, it falls short of clarifying why this investigation is so important. Also, I wish she would do more and get the particulars on the conflicts of interest. For instance, did Dr. Bakken have any conflicts of interest? (Almost every one of them on the panel at the time did.) It profoundly impacts whether you deem his opinions credible.

Why was the IDSA panel investigated?:
The investigation of the IDSA wasn't solely about conflicts of interest. The key reason for the investigation and resulting antitrust settlement was this:

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.

If you're writing a journalistic piece and quoting someone from a panel which has been investigated by an Attorney General, aren't you obligated to speak to the AG about said investigation? To understand why he pursued it and what he found? It's not an every day occurrence, a medical panel being investigated this way and being forced into a settlement agreement. In fact, it is unprecedented.

Isn't it your job, then, to explain to your readers why this is so important? Your readers need to understand how conflicts of interest and suppression of evidence impact people's lives. We're not talking about whether a new color of M&M's is a stolen formula from Skittles. People are losing their abilities to function. They are sick and dying.

These guidelines issued from these medical panels are used by the CDC, the insurance industry and doctors to determine if someone has a particular disease and how to treat it. If the process for creating those guidelines is corrupted it has a profound impact. Patients deserve better. They have the right to the best possible understanding of their disease and how to treat it, regardless of who might make money or who is protecting their reputation.

There is more than one Lyme-related medical society:
Ms. Lerner gave the weight of an entire medical society to the opinion held by Dr. Bakken. She then treated Dr. Malloy's opinion as that of a single practitioner. If Dr. Malloy were alone in her view, some rogue doctor, well that would be appropriate. However, this is not the case. In fact, there is another medical society who views the evidence about Lyme Disease quite differently from the IDSA. They are called the International Lyme and Associated Diseases Society (ILADS). Proper journalism would require that you check out whether the IDSA is the only organization that investigates the science and renders an opinion about this disease.

Where are the references to ILADS, Ms. Lerner? Why is the conflicting opinion presented as such an outlier?

Unchecked accusations:
When doctors accuse politicians of "practicing medicine", aren't you obligated to investigate whether politicians are? Why do you let that accusation stand?

The AG's report on his investigation makes it clear that he is not "practicing medicine". Rather, he is shining a light on the investigative process of a panel which wields a lot of power in the world of medicine. You don't have to be a doctor or a scientist to assess an investigative process.

Legislators are not practicing medicine, either. They are protecting doctors and patients who are being victimized because of a corrupt process that generated "guidelines" which are being used as law. In fact, doctors and insurance companies could be accused of practicing law. Legislators are taking back the power to practice law.

What do I mean? Well, doctors who subscribe to the IDSA rule of law will file charges against other doctors who are trying to treat patients with Lyme Disease. The sole justification for these charges is that the treating doctor is not following IDSA guidelines. But, if they are "guidelines" and not "law" then why isn't a licensed doctor allowed to treat his patient as he sees fit? Let's be clear, it is not the patients filing these charges. In many of the cases, the patient got better under the accused doctor's care. It is insurance companies (because they love any justification for denying care) and other doctors. They are testifying against doctors at state medical board hearings. That's a legal venue.  So, they are stepping out of their role as medical practitioners and into a role as some kind of anointed deputy.

What legislators are doing is looking at the process, wherein the IDSA panel suppressed evidence, and saying, "You can't then use the results of that process to legally punish doctors and deny patients treatment." They are not dictating how a doctor must practice medicine. They are dictating how the law is being applied to doctors. That is their jurisdiction.

Don't leave accusations unchecked, Ms. Lerner.

"Makes No Sense" and "Probably don't have Lyme"
These are not quotes based on facts. They are steeped in opinion. How about challenging those opinions? If Ms. Backes was diagnosed and treated for Lyme. When she later became ill, there was no other diagnosis but MS. However, ILADS, the Lyme and Tick-borne Disease Research Center at Columbia, the American Journal of NeuroRadiology, the National Center for Biotechnology and many  more, recognize that Neuroborreliosis (Neurologic Lyme) can look like MS. So, why does it "make no sense" that this woman would have been told she had MS and then, in an attempt to see if she actually had something treatable - since she did have a history of Lyme Disease - was cured with a treatment for Neurologic Lyme? And, how do you explain her recovery from supposed MS? It sounds like a throw away opinion given by someone who doesn't want to face that his view on the subject might be incorrect. Shouldn't he be questioned on that?

Then we have another infectious disease doctor who proclaims that  "many of these patients probably never had Lyme disease at all".  Wow. Now he's diagnosing patients he's never seen. According to the CDC, Lyme Disease is a clinical diagnosis.

Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks.  Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans.  For detailed recommendations on serologic testing, click here.

When making a diagnosis of Lyme disease, health care providers should consider other diseases that may cause similar illness.  Not all patients with Lyme disease will develop the characteristic bulls-eye rash, and many may not recall a tick bite.  Laboratory testing is not recommended for persons who do not have symptoms of Lyme disease.

How is this doctor allowed to make such a spurious claim about thousands of patients whom other doctors have seen and he has not? Just because it doesn't suit his worldview about Lyme Disease? Why do we even report such an unsubstantiated claim?

Did you ask him about all the patients who have never tested positive for anything else, but have tested positive for Lyme? Why are they denied treatment if they continue to have symptoms after the short course of antibiotics? There is no scientific proof that a) a short course of antibiotics definitively cures a human patient of Lyme Disease and b) that persistence of the disease is not possible. So, when a patient is found to have Lyme Disease and isn't cured with the proscribed treatment, why do you assume that it must not be Lyme? That simply defies logic.

And what about the myriad cases of ALS and MS that have miraculously been reversed with long-term antibiotic treatment? Or the prevalence of co-infections?

In this short piece of journalism, Ms. Lerner has actually done more justice to the doctors and patients fighting Lyme Disease than many other journalists have done. Still, it falls far short of informing the public about what is really going on. It doesn't begin to get out the way money and ego trump the needs of patients. How vulnerable people, disabled by a horrible disease have to muster the wherewithal to fight tooth and nail for a chance to regain their health.

The keyhole into this mysterious world is the investigation done by Attorney General Blumenthal. Journalists need to look through that keyhole and bust open the door.

Mission: Lyme Journalism

I hereby declare a very specific sub-mission regarding Lyme Disease Awareness:

I will push back against journalistic weaknesses in every article I read about this disease. It will be an ongoing series on this blog. Want to help me name the series? Post in the comments.

I get weary reading these stories where there is no digging, at all. As a layperson, I can find more information shining a light on the background of these issues than a journalist?

I don't think so. I think that journalism is in decline as the industry is taken over by corporations which are not dedicated to the mission of the 4th Estate.  Profits are more important than speaking truth to power. In a world where people are consuming information at a rapid pace, 24 hrs a day, news corporations are more interested in pumping out product than providing meaningful content. They don't have the patience it takes to dig into a story deeply, so they print whatever they can get in the fasted time possible.

At least that's how it looks.

Well, I can do my one little part. I know a bit about what's going in the realm of Lyme Disease. And I have a strong sense of logic and discernment. So, when news outlets publish something related to Lyme, I can practically smell the weaknesses.

I'll sniff out what I can and report what I find here. I hope you find it useful.

Journalistic Fail: "It Just Doesn't Resonate"

Local television station WBZ has posted a story about Lyme Disease on their web site. In the piece there are two patients cited who a) had difficulty getting a diagnosis when they were sick, and b) got better when they were finally put on long-term antibiotics. One of those patients had been paralyzed and the other had been told she had a year to live. After finally getting diagnosed with Lyme and being given long-term antibiotic treatment, both improved. Neither has died.

The piece is entitled "Doctors Divided on Treatment of Lyme Disease". The author, Joe Shortsleeve, after giving the history of these two cases, goes on to tell us that getting treatment is difficult. Both patients, though they had health insurance, had to go out of state and pay out of pocket for their treatment. He explains that this is because the Infectious Disease Society of America (IDSA), is against this treatment. He then quotes two different doctors and their opinions on the subject.

Ok. 
Rant #1:

What Joe Shortsleeve fails to mention is that the IDSA wields an enormous amount of power in the medical world. That they are the law of the land when it comes to guidelines defining the disease, how it will be tested and accepted treatment protocols. He also fails to inform the audience that the IDSA had to agree to an antitrust settlement with the CT State Attorney General because:

"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.

He further failed, to report that the IDSA violated this antitrust agreement by purposefully manipulating and avoiding transparency in the review process.

This irks me. It is shoddy journalism to do a report like this where you do not question the credibility of an organization with power. They have been investigated by an attorney general and they have violated the antitrust settlement agreement that resulted from that investigation. Why do they continue to be referenced without pointing this out?

And what about looking into other medical associations? It is not simply individual doctors who disagree with the IDSA on this subject.
  
Rant #2

What does the doctor who supports the IDSA approach to denying treatment to sick patients have to say to defend this position,

"The concept that Lyme disease germs can be lurking in one's body open endedly… just hasn't been resonating," said Dr. Mark Pasternack

Seriously? You're talking about people's lives in the balance and you support denying them treatment because "it just hasn't been resonating"? Wow, there's a powerful scientific argument.

Where is the journalistic ethic that asks, "and do you have science that proves that the germs can't lurk?" I mean, look at those two cases up above. You're talking about denying treatment to a woman who was paralyzed and another who was given a death sentence. The reporter thought it was satisfactory to leave it at "just hasn't been resonating?"

Rant #3
The report does, then, mention what the IDSA claims is a concrete reason for denying treatment: Long-term antibiotic use comes with risks.

You may be completely debilitated but we don't think you should have long-term antibiotics because there is risk.

Where is that dogged journalistic nature that asks, "Are these risks any greater than the risks taken to treat other diseases?" or "Do we use long-term antibiotic treatment for any other diseases?"

This irks me to no end. The public needs to understand that thousands of patients across the United States are living disabled lives because of the IDSA. An organization who

1. was shown to be corrupt in an antitrust investigation
2. was proven to lack integrity when they violated the antitrust settlement that resulted from that antitrust investigation
3. who have no science to prove their position and use a lame defense of "it just hasn't been resonating"
   and
4. deem that disabled and dying people should not be able to take risks to recover their health, when those same risks are not denied for people with other diseases.

Why do we, in this country, continue to give credibility to people and organizations who have clearly demonstrated that they don't deserve it?

When will get back to expecting quality journalism and quit accepting stenography?

I'll tell you what doesn't resonate: the IDSA as a credible source of information.