HARD SCIENCE ON LYME: Another journalist with only half the story
Michael Kruse says he thinks people “should be looking at all of the evidence, not just the few studies that agree with an opinion that moves us emotionally.” Then he bases his argument on evidence that agrees with an opinion that moves him emotionally.
By Phyllis Mervine
I confess to always feeling annoyed to read yet another article like Michael Kruse’s recent opinion piece in Canada’s Huffington Post . I hate to waste time talking to another ill-informed “journalist” who trots out, again, all the tired arguments about chronic Lyme and its treatment. Just his statement, “Chronic Lyme disease [is]a bogus diagnosis for medically unexplained symptoms” almost makes me retch.
The symptoms wouldn’t remain “medically unexplained” (and untreated), if people would just admit the obvious. Lyme disease is characterized by vague, subjective complaints. Lyme specialist Allen Steere himself, in his second paper (Ann Intern Med 1977), recognized “the enlarging spectrum of Lyme disease”, with malaise, fatigue, headache, stiff neck, backache, myalgias, and nausea among the leading symptoms. He also noted that 25% had no rash. Objective signs are the exception, not the rule. Insisting on objective signs leaves most patients undiagnosed.
Michael Kruse thinks everyone “should be looking at all of the evidence, not just the few studies that agree with an opinion that moves us emotionally.” That sounds good to me! But then he proceeds to argue almost exclusively from one side of the Lyme debate. He cites Dumler, Feder, Johnson, O’Connell, Shapiro, Steere, Wormser, Halperin, etc. etc., all well known apologists for the Infectious Diseases Society of America’s views on chronic Lyme disease. The “hard-to-catch, easy-to-cure” crowd.
It’s easy to win an argument if you don’t let the other guy say anything. It’s kind of like shooting caribou from a helicopter and calling it “hunting.”
Kruse’s token citation on the other side is Maloney, a member of the International Lyme and Associated Diseases Society and a strong advocate of basing treatment recommendations on science. Maloney is excellent, but where are Stricker and Johnson, Fallon, Brorson, Barthold, Oksi, Masters, Preac Mursic, Liegner, Cameron, Phillips and a host of others who have documented other evidence that doesn’t fit Kruse’s simplistic model?
Kruse says it is “decidedly unethical” to offer long-term medication since not everyone gets better, it’s expensive, and it exposes patients to risk. How about asking the patients what risk they are willing to take for a chance at recovering from a disease that investigators have described as more disabling than congestive heart failure? We let people with cancer choose chemotherapy, despite all its known risks and failure rate. We do this because we don’t have anything better to offer. We don’t have anything better to offer people with chronic Lyme disease, either. So let’s give patients the choice.
Here’s my advice to Michael Kruse: Learn the difference between evidence – actual findings – and interpretation – also known as opinion. And take your own advice: “Do more scientific research before you discuss diseases.” Especially Lyme disease.
Nicely said, thank you for your rebuttal. Initially diagnosed with Fibromyalgia, I was given lots of “experimental” and expensive treatments. There is no specific test for Fibromyalgia, and yet it continues to be treated and seen as an actual disease. To be honest, I’d rather have stuck with the diagnosis of Fibro(not to diminish it as being horrific), having the option to take some disability time off to heal. Instead, I wrap my PiCC line up every day, take a daily dose of energizing supplements, force a smile and go to work. Lyme is very controversial, for those that don’t have it. For those of us that do, I assure you we would skydive from an airplane, naked, in Antartica if it would make us well again.
Beautifully and factually expressed Phyllis. Thank you!
I agree.
I AGREE that this EXTREMELY important article is expressed beautifully and factually…but I’d just like to add that, the way to avoid having problems associated w/long term antibiotic use, is by simply taking a daily otc supplement, consisting of PREBIOTICS AND PROBIOTICS (just make sure it has a GOOD amount AND variety in it, AND comes from a GOOD source). :]
Lyme Disease is ALREADY HARD ENOUGH TO LIVE WITH, but the STRESS of having to ARGUE W/THE VERY PEOPLE WHO ARE SUPPOSED TO HELP YOU GET BETTER, IS B E Y O N D REPROACH (THE CORRUPTION BEHIND THIS DISEASE MUST BE THE LONGEST ONGOING A S S A U L T ON HUMANITY, EVER IN EXISTENCE)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! >:-P
Cindy. ..love your last statement! !! So unbelievably true!!!
I have always said that as an experiment to prove their point. Let the deniers of chronic Lyme contract the disease by tick or blood transfusion, let them wait about 6 months which is about the average length of time it takes for most of us to get diagnosed and then treat the disease with full blown IV antibiotic therapy. If they are cured and symptoms no longer linger, then they may have a valid argument that chronic Lyme does not exist. I actually suggested this to the IDSA and of course never heard back from them. They obviously are not really convinced that they have all of the answers with regard to Lyme disease.
Thank you Phyllis. I especially like your point about the chemotherapy. Our distinguished medical community has no problem in cramming chemo down our throats every time they find a tumor. Lyme is not always severe, but when it is, we deserve the right to do nothing at all or everything possible.
I can’t top sky diving naked onto Antarctica, but I can say as a Practitioner in the Chronic Pain arena, that if you don’t have Lyme & never have, don’t throw your opinions around that tend to keep all of us from moving into better diagnosis, treatment and, maybe in my lifetime, an actual cure. For me it’s been – now that I know the symptoms so well – forty-nine years. I come up just short of wishing Lyme on you naysayers.
If it were the 19th century, Kruse would be criticizing the notion of washing one’s hands, to better prevent the spread of harmful microbes.
He is a propagandist. And his article is propaganda, useful only in soothing the egos of failed doctors and in suppressing the masses a bit longer, while government and insurance save money and face, still ignoring – yet failing to hide – the ever increasing number of those with neuro-immune disease.
Kruse’s mention of “medically unexplained symptoms” is a standard cue for attributing scientific unknowns to psychogenic origins. And thus, patient persecution continues.
I urge anyone who is financially able to take legal action against our abusers.
In history the “We are right!” crowd has often dominated for decades or centuries before they were proven wrong. I don’t see any difference here.
And, sadly, most in the crowd are usually long dead before their hubris is exposed.
But, to the nay sayers defense, not everyone on our side is scrupulous and our claims look damn bizarre to those who have not experienced the reality of this disease.
I wonder who sponsored the Kraus article? Hmmm……
I “enjoy” reading about the heroic efforts made by chronic Lyme victims. I can relate and the descriptions of their symptoma help me better understand mine. Their progress as their symptoms change help me understand what my progression will be like. We must stop talking only of exercise and life style adjustments. Take the censorship out of the cures. It only makes us more of a victim of the medical profession. TELL US WHAT YOUR MEDICAL PROTOCOLS WERE THAT GOT YOU WELL. DON’T MAKE US ALL GO THROUGH THE SAME THING BEFORE WE CAN GET WELL. MANY OF THE TREATMENTS THAT HELPED ME I HEARD FROM VICTIMS NOT DOCTORS. LD.ORG MUST DO MORE ON THIS FRONT. SURLY IT IS NOT PRACTICING MEDICINE IF THE VICTIM TELLS THE WHOLE STORY. (First Admendment) The medical boards would not dare attempt to block the publishing of someone’s victory over Lyme. Thank you
He needs to get a tick, and Lyme, not be treated early because he doesn’t test positive, and finally only be treated for 2-4 weeks, and not get well like thousands of other people who remain ill. Then let’s see what he has to say!
Fourteen years before my son was finally diagnosed. He was close to not making it. Been in treatment 2 years and finally showing some improvement. At least another year to go. He’ll never have a normal life but hoping he’ll be able to work again. The naysayers make me sick!
This guy , as well as any other “it doesn’t exist” doctor , needs to volunteer to be bitten by a tick.
What do they have to worry about ? It’s just a bite !
I have struggled with this disease for 40 years. Kruse says it is “decidedly unethical ” to offer long term meds….
No, it Is decidedly unethical to continue arguing this point. Lymes, it’s co infections and it’s late chronic stages are debilitating . Enough. Stop the insanity. Help us.