On 12/8/2010 an article appeared in the Chicago Tribune entitled, Chronic Lyme disease: A dubious diagnosis. The following is my response.
According to the Infectious Diseases Society of America, I can’t possibly have Lyme disease.
That doesn’t change the fact that in the Fall of 2008 my health went to hell. It started with weakness. I was a marathon runner, but suddenly it became difficult to bike up the small hill where I picked up my sons from school. Then I started having muscle twitches and spasms, all over my body, all of the time. Parts of my body started going numb. Other parts were intermittently tingly, or would have sudden shooting pains, like electric shocks running through my muscles. I became heavily fatigued so that most afternoons I needed to spend several hours napping. It became harder to think clearly. I lost thirty pounds in a couple of months, for no clear reason. One winter morning I spent a half hour shoveling snow – something I ordinarily enjoy – when I suddenly went dramatically weak, pale, shaky. It took me several hours to recover.
I made an urgent appointment with my doctor. He was certain it was a cardiovascular episode. I was at the cardiologist’s office the next day, doing a stress echocardiogram. Turned out my heart was in great shape. That wasn’t the problem.
What was the problem? I had no idea. And neither did any of the doctors that I saw over the next two years. Not the first neurologist, not the oncologist, not the gastroenterologist, not the rheumatologist, not the allergist. And not the second neurologist, at the Mayo Clinic.
Mayo was able to tell me that I didn’t have ALS, which was a great relief since that’s what my symptoms most closely resembled. Through doctor visits and many, many tests I was also able to rule out cancer, MS, Parkinson’s, Celiac Disease, Polymyositis, and many other more obscure conditions. Whatever was wrong with me looked at least a little like all of those things, but was clearly something different. Something no one seemed to be able to identify.
Somewhere along the line I even had a test for Lyme disease, the ELISA screening test, which came back negative. Made sense to me at the time. Lyme was the last thing I suspected. For one thing I live in Montana, where popular wisdom has it that Lyme does not exist. For another thing, I didn’t have that classic bullseye rash that you’re supposed to get.
I didn’t know at the time that the ELISA produces many false negatives. And I didn’t know that you can get Lyme without having the classic rash pattern. As a result, I didn’t give much thought to the rash that I actually did have, a month or two before my symptoms started.
In the meantime, my entire life was transformed. I had to stop running and doing any other demanding exercise. Work wore me out so I did as little of it as possible. I was consumed with fear, trying to figure out what the hell was going on with me. And I spent a whole lot of money trying to get an answer.
In the summer of 2010, on the recommendation of a friend, I went to my doctor and asked for a more sophisticated (and much more expensive) test for Lyme – the Western Blot.
According to mainstream medical practices, my doctor had no business ordering that test for me. According to the CDC, if a test comes out negative on the ELISA, you don’t have Lyme. Period.
Funny thing though…the new test came back positive. For Borrelia burgdorferi, the spirochete that causes Lyme disease. And the test results were unequivocal. They met the CDC standards for reporting Lyme.
Finally, I had a diagnosis. Finally I could start treating the symptoms that had already stolen so much of my life away.
Except for one thing.
I couldn’t, according to the IDSA, actually have Lyme disease.
Here’s why. My doctor (who was skeptical that I could possibly have Lyme) was willing to prescribe me a month’s worth of antibiotics – the IDSA recommended treatment for the disease. I filled the prescription and took the medication faithfully. The result: nothing. I might as well have been taking Tic Tacs. My symptoms continued exactly as they had before.
By the logic of the IDSA, if symptoms corresponding with Lyme don’t respond to the recommended treatment, then the disease isn’t Lyme.
Stop for a moment to consider that argument. Imagine the same logic being applied to any other disease. Say, to treatment for cancer. Try to imagine a conversation between a breast cancer patient and her oncologist going like this:
“I’m sorry Ms. Jones., but since you haven’t responded to the chemotherapy I can only conclude that you don’t actually have cancer. It has to be something else.”
And the next line in the conversation would almost inevitably be:
“I suspect that there might be psychological issues involved, so I’m giving you a referral to a therapist.”
The absurdity is self-evident. But this is exactly what Lyme patients are being told every day.
Mis-diagnosis goes both ways.
The Chicago Tribune article conveys the impression that hundreds or even thousands of people are being told that they have Lyme disease when they don’t, that Lyme is being massively over-diagnosed by loony-tune doctors, who then murder their patients by giving them dangerous treatments that they don’t need.
It’s awfully hard to square this accusation with experience of so many people with Lyme, who have spent years going from doctor to doctor, just like I did, who are themselves being mis-diagnosed with everything from arthritis to ALS. Or who are being told that there is nothing wrong with them at all, that their pain and fatigue and cognitive impairments are all in their head.
Non-diagnosis can be just as harmful as a mis-diagnosis.
The truth is that nothing in medicine is as clear as the way IDSA defines Lyme disease. Every illness in the world has variations and subtleties. Every disease manifests itself a little differently in every human being. And every treatment for every illness is variable in its effectiveness.
Except, according to the IDSA, for Lyme.
So, according to the Infectious Diseases Society of America, there’s no way that I can have Lyme disease.
But that doesn’t change the fact that my life has been turned upside down by Lyme. That I continue to experience the same set of ever-shifting symptoms which dramatically limit my life and leave me feel like I’m about to turn 80 rather than 50.
And by comparison with many other people with Lyme, I’ve got it pretty easy. I have some pretty decent days – as long as I get a lot of sleep and don’t work too hard, as long as I don’t try to go running or skiing or to rake leaves or shovel snow or do anything else which will inevitably trigger a reaction.
I’m lucky enough now to have found a doctor who believes that I have Lyme and who is willing to treat it. The treatments haven’t helped much yet, but that’s not surprising. Because the very controversies which the Chicago Tribune describes have paralyzed research into effective Lyme treatment.
The great paradox here is that if we want our doctors to become more adept at diagnosing and treating chronic Lyme, then we have to investigate the experience of those who us who actually have it. If we continue to marginalize patients then it will never be possible to do the research which can truly determine what is and is not an appropriate treatment for the disease.
To put it bluntly: those practitioners who don’t believe in the existence of chronic Lyme are responsible for creating the very problem they are complaining about. Because there’s no way to identify safe diagnostic procedures and treatments without first acknowledging the existence of the disease.
I don’t know of any other disease in which patients are blamed for the failure of their treatment.
And I can’t imagine any other illness about which the argument would be made that ineffective treatment means that the disease doesn’t exist.
Read Other “My Lyme Disease is not the IDSA Lyme Disease” stories:
Fantastic post Andrew! You clearly convey the absurdities of the illness we are dealing with. Thank you.
Try to imagine a conversation between a breast cancer patient and her oncologist going like this:
“I’m sorry Ms. Jones., but since you haven’t responded to the chemotherapy I can only conclude that you don’t actually have cancer. It has to be something else.”
And the next line in the conversation would almost inevitably be:
“I suspect that there might be psychological issues involved, so I’m giving you a referral to a therapist.”
The absurdity is self-evident. But this is exactly what Lyme patients are being told every day.
EXCELLENT POINT. It’s so absurd. Thank you for posting this.
Great job Andrew!! Very well written, great points. Thank you!!
This is a well written, painfully true piece!
What an excellent blog post! I’ll be forwarding your link to the chairman of the Virginia Lyme Disease Task Force, put in place by Gov. McDonnell, that has just been formed to identify the ‘reality’ of Lyme in Virginia and address current unreliable diagnostic testing, effective long-term treatment plans, and how to better educate MDs and the public on the dangers of Lyme and tickborne co-infections. The chairman’s wife and 7 of their 10 kids have Lyme. It’s nice to have a task force panel with a little real-life experience.
I AM SO GRATEFUL FOR PEOPLE LIKE YOU……WE HAVE TO KEEP SINGING OUR STORIES……AS LOUD AS WE CAN……AND MAKE IT A SONG THAT NEVER ENDS!!!!!.
Great article, Andrew. I hope the Trib picks up some of our stories. Here is mine:
http://www.spirochicks.com/2010/12/my-lyme-disease-is-not-idsa-lyme.html
IN CONTINUING WITH SINGING OUR NEVER ENDING SONG……..I HAVE 5 CHILDREN WITH LYMES AS WELL AS MYSELF…..AND MY HUSBAND DIED OF LYMES. AND MY EXTENDED FAMILY ALSO SUFFERES WITH IT. IT TOOK 32 YEARS TO GET THE ANSWER. I AM SINGING MY SONG LONG LOUD AND CLEAR!! BLESSINGS TO ALL THAT CHOOSE TO SING THEIR SONG!!
Thank you all for your kind words. I’m so glad to know that what I wrote can speak for the struggles we all face. (If anyone is interested in the long version of my story, I tell it in the “Being Undiagnosable” series which you can find in the sidebar.) May we all have strength and courage as we move forward through this maddening disease.
Andrew,
Fabulous piece of writing. Here in Connecticut, the epicenter of the pandemic that Lyme is, there are only a handful of physicians who treat Lyme disease. To make matters worse there are some vocal, militant, anti-Lyme doctors at the Connecticut Children’s Medical Center, University of Connecticut Medical School as well as Yale. Every time there is even a whisper of he truth about Lyme disease, these guys open their mouths like they are the end all to any knowledge about the disease and the press quotes them as gospel truth. Fortunately, we have made some gains in the state legislature regarding insurance payment for treatment as well as a law that prevents doctors from being held up on charges for treating the disease. Someday I have to believe we will be vindicated. We might not be alive, but our fight will not have been in vain. Fight the fight.
Very well said! Excellent, exactly what we need to convey. I’ve heard “there is no Lyme in Arkansas”. Ha! That’s the biggest crock this side of Red River! Every family in the Ozarks has at least 1 relative who have had the “tick fever”. It’s real, EVERYWHERE. As long as we keep talking, we can stir the hornets nest. I’m for exposing the whole controversy. That’s why I won’t shut my mouth!
Andrew,
I told Susanna that I’d like to talk to you because I think it’s possible that what you have is not Lyme. I, too, tested positive to the Western Blot. I took a course of antibiotics, which not only didn’t help me but actually wound up making me feel worse. My symptoms would come and go, but at the worst, I felt shitty most of the time. I went to countless doctors, had many different diagnoses, including the one that it was all in my head. Then a year ago, doing Google searches on various symptoms that I was having I came across diagnoses of Candidiasis. I highly recommend that you read a book called The Yeast Syndrome by Dr. John Parks Trowbridge. It may be that you don’t have this and what you do have is Lyme. But there is also the possibility that you got a false positive for Lyme. There is still so little that they actually know or understand about it. And if you don’t have it, and you do have yeast overgrowth, then the antibiotics you are taking will make your condition worse, possibly much worse. I went on an incredibly strict diet to counteract my condition the details of which I won’t bother you with now, but suffice to say that over the course of a couple of months, I went from feeling crappy to feeling a good bit less crappy. At the end of six months, I was feeling better than I had in years. So read the book, see if it makes any sense to you, and if you want to talk, I’m available any time. Cheers,
Peter
Thanks for sharing your story.
Peter- I think that most of us know that yeast is a part of the Lyme puzzle. It’s not a matter of Lyme OR yeast, but an AND.
My story:
http://lemonandlyme.blogspot.com/2010/12/my-lyme-disease-is-not-idsa-lyme.html
Andrew,
Thank you for sharing your Lyme story. You have obviously put a million times more thought into this subject than the writers of the hastily written, poorly researched article in the Tribune. I hope that your treatment turns around for you soon. One thing that you should know is that ticks are cesspools of disease. If you have Lyme, there is a high probability that you my have one or more tick-borne co-infections as well. Like Lyme disease, the tests for many of the most common tick-borne co-infections can have false negative results. It can take a highly skilled clinician to sort through the symptoms of the multiply-infected patient and address each co-infection in a systematic way. If you aren’t responding to your current treatment it could be that you need to address a co-infection in addition to Lyme disease.
My 13-year-old daughter didn’t respond to her to first two-week treatment of amoxicillin when she first became severely ill in 2009. After this she went for months with a misdiagnosis of post-illness fatigue syndrome while more new and disturbing neurological symptoms developed. Under the care of several caring nationally known LLMDs we have come to understand that she suffers from Bartonella, Babesiosis, and Mycoplasma pneumonae as well as Lyme. Her treatment is progressing slowly as each co-infection is being addressed. The process can best described as peeling layers off an onion. I wish you well in your own journey towards health.
Brooke,
The problem is that if what a person is suffering from is yeast overgrowth, antibiotics are not only not the cure, they are in all likelihood the cause. So the proscribed course of action for treating Lyme is actually the exact opposite of what you should be doing to treat candida. Now, obviously, if you have Lyme, you have to treat Lyme. But it is also quite possible after a long course of antibiotics that you will have created yeast overgrowth, and you will then need to treat that.
Anyway, I read your story and it is harrowing, and I wish you a speedy and continued recovery, but if you are still having health issues, you might now want to look into what to do to counteract all the antibiotics you’ve taken. They wreak havoc.
Peter, thanks for the information. Truth is, I’ve taken very few antibiotics thus far. Four weeks of doxycycline in the summer. A couple of weeks on Ampicillin in the Fall. They had no effect on me whatsoever. And I’ve done several rounds of various probiotics along the way to counter whatever effects the abx might have had. Mostly I’ve been taking herbal anti-microbial supplements, in conjunction with perxoide IV. I always appreciate having more information and I’ll definitely look into the yeast stuff. But my symptoms really are a good match with Lyme and my strong sense is that Lyme is what I’ve got. I hope that the treatment you’re doing continues to help you to feel better.
Andrew
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Andrew,
If there’s one good thing to come out of this horrible Tribune article, it’s that it’s introduced me to other Lyme bloggers like yourself. I’m going to post a link to your story on my blog, and I hope that the Tribune writers are reading each and every one of these and seriously asking themselves if they know what they’re talking about. My greatest hope is that we’ll see them recant and cover the real issues around Lyme Disease. But since that can’t be counted on, I’m praying stories like these will bring more awareness to the public and that someday a story like the Tribune one won’t be able to run because we’ll all know it’s false.
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Andrew,
I am so sorry for what you have been through. I am so angry with the medical community! Are you seeing any improvement at all in your symptoms with treatment? My husband and I have had similar experiences as yours with Lyme disease. We have both been under treatment for months by a LL physician with little improvement. We both have neurolyme with lots of twitching and other neuro symptoms. My husband has had a headache every day for over a year. We just found another LL doctor and have begun seeing him. My husband is about to start IV antibiotics (he is much worse than I am), and we are hoping it will help.I guess we must all keep having positive thoughts and believe we will get well. Blessing to you. Thank you so much for your post.
Neurolymie
I’m so sorry to hear that you’ve been struggling as well, Neurolymie. My treatment hasn’t helped much at all with the Lyme symptoms – although getting some of my hormonal issues straightened out has improved my mood and helped me cope a lot better. It’s such a tricky bug, seems like the treatment that each person needs is a little different for everyone. I may wind up in the antibiotics camp as well, but I’m sticking with the chinese herbs and IV peroxide treatments for a little longer to give them enough time to really see if they’re working. Good luck with your treatment.
Your words so eloquently reflect my heart…you turn a lightbulb on in my darkness, but I only wish it would turn on lights in the minds of those I so desperately need to save my life. I accept these days that my light is fading, but for the sake of those who still have a chance or those who will need that light someday, I hope through your words and and expericnes the doors of hope and life will fly open, so others may be spared the pain of living in the dark ages of lyme research.