LYMEPOLICYWONK: The IDSA Says Chronic Lyme Disease Is No More than the Aches and Pains of Daily Living. Is this True?
The treatment guidelines of the Infectious Diseases Society of America dismiss persistent symptoms of patients with chronic Lyme disease (CLD) as no more than the “aches and pains of daily living”. After all, they reason many people complain of fatigue, arthritis, pain, emotional and cognitive dysfunction. The IDSA’s point is that symptoms of Lyme disease occur no more frequently than they do in the general population and that, at any rate, they are not serious—just minor aches and pains. But is this true? LDo’s recently published survey results say no.
When we conducted our last survey (which was published in PeerJ) of over 3,000 patients with CLD, we asked both the frequency and the severity of symptoms. To our knowledge the LDo quality of life study is the first study to rate symptom severity. The survey found patients with CLD have a far higher frequency of these symptoms and they report more serious symptoms than the general population.
The LDo study found that patients with CLD experience an average of 3 severe or very severe symptoms. 75% of patients reported at least one symptom as severe or very severe, and 63% reported two or more symptoms.
The frequency that patients reported any of the ten symptoms included in the survey as severe or very severe were as follows: Fatigue (48%), sleep impairment (41%), joint pain (39%), and muscle aches (36%) were the most frequently reported followed by other pain (34%), depression (34%), cognitive impairment (32%), neuropathy (32%), headaches (23%) and heart-related issues (10%).
Beyond this, the IDSA’s view that CLD patients report the same symptoms as the general public is simply wrong. As the table below shows, only 20-30% of the general public report fatigue compared to 97% of those with CLD, with 48% reporting severe fatigue. The IDSA dismisses Lyme pain by saying that 4-14% of the general public complain of serious pain. But in CLD, between 32-39% of patients report severe or very severe pain.
Finally, the IDSA points out that everybody has a bad day now and then. A full 6% of the general population self-report unhealthy days during the preceding month. But Lyme patient report on average 20 bad days per month, while the general population reports 4 days. In fact, the number of days with activity limitation due to pain (17 days) reported by CLD patients significantly exceeded days with activity limitation due to pain caused by cancer (13 days), cardiovascular disease (9 days) and emotional problems (9 days).
In short, patients with CLD experience these symptoms more commonly and more severely. It’s time to recognize that the IDSA’s contention that CLD symptoms are just “aches and pains of daily living” is no more than the naked opinion of researchers with no supporting data. They cited no data — zilch, zip, nada — on CLD. This is a recurring theme with IDSA guidelines. They are long on opinion and short on data. Their own researchers say so. When it comes to opinions like these that damage patients, trivialize a serious disease, and make it harder for patients to receive care, we’d prefer that the IDSA kept its opinions to itself.
The study was a joint effort of LymeDisease.Org and Prof. Jennifer Mankoff at Carnegie Mellon University.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Executive Director of LymeDisease.org. Contact her at lbjohnson@lymedisease.org. On Twitter, follow me @lymepolicywonk.
RESOURCES:
Johnson, L., Wilcox, S., Mankoff, J. and Stricker, RB (2014) Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey. PeerJ, DOI 10.7717/peerj.322. (Open access.)
The press release for the survey is here.
Our previous survey was published in 2011: Johnson L, Aylward A, Stricker RB. Healthcare access and burden of care for patients with Lyme disease: a large United States survey. Health Policy. 2011 Sep;102(1):64-71.
This blog is part of a series on the Quality of Life Survey, which includes: Survey Results Published!
Study Finds Coinfections in Lyme Disease Common
How many of those with Lyme disease have the rash?
Chronic Lyme disease patients suffer high unemployment and disability
That’s because a HUGE majority of the population has Lyme and coinfections now! The pain we who have late stage Lyme it’s not like normal aging pains. The pain of feeling like every tendon and bone in my body is being twisted and broken on a daily basis is not normal aging! The migraines lasting for up to 11 weeks at a time and feet pain where the bones feel arched and froze with excruciating pain when forcing them flat to walk everyday is NOT normal!!!
I would say being homebound every day due to severe incapacitating symptoms for multiple years in my 20’s thus far, is not “daily living.”
The members of the IDSA responsible for the denial of Lyme disease treatment, research, recognition, or development for an effective cure, all for the potential profit from their developing vaccine and Wormser’s plans for a diagnostic center in NY; those responsible should all be charged with criminal manslaughter for every life that has been lost during their service on the board, and loss of living lives such as my own.
“Aches and pains of everyday living?” Are the *%#!ing sniffing glue? My limbs are screaming with neurological pain, what feels like electrical zapping. My head feels like someone is trying to drown me…and like bags of cotton have been stuffed inside of it. The endless, horrifyingly loud ringing in my ears is making me nuts. The pain behind my eyes makes me want to jump off a cliff. I cannot walk my poor dog even around the block, due to exhaustion…although I really, REALLY want to.
We must absolutely stop all minimizing of the very real and tremendous suffering and pain that Lyme victims experience. It’s utterly maddening to read such mind-numbing garbage. 🙁 No, it’s wrong and cruel to continue to deny the reality of Chronic Lyme disease. Lyme and other “tick” infections are science-based and can be viewed under a microscope. I say : LISTEN TO THE PATIENTS. WE HAVE NO REASON TO LIE. Meanwhile, those who deny our suffering have financial and other incentives to do so….
CHRONIC LYME IS SCIENCE-BASED!
Going from a happy, healthy, active, homeschooling 42 year old mom of 5 to being bedridden, in intense pain, fatigue, GI dysfunction and then progressing to 50 plus symptoms over the next two years in NOT typical aches and pains of life! My first two doctors made me worse and did not know how to treat the cascade of symptoms going on in my body.It’s taken 10 years to get much of my life back thanks to my doctors who practice Function Medicine and treated me aggressively, though much of the cost is out of pocket since insurance typically only covers 2-4 weeks of antibiotics. This does NOTHING once the infection becomes systemic. Chronic Lyme is a living hell and destroys dreams, your life as you knew it and your finances. The CDC needs to wake up and eat humble pie, change their outdated and narrow guidelines so the 300,000 people that now yearly get Lyme will have an improved chance of getting better with adequate treatment. Delayed diagnosis and limited treatment turns into chronic Lyme, and this serious, systemic illness must be taken seriously.
refer to trial of “Dr. Jones” in Connecticut in which the IDSA FINALLY had to admit under oath 98% of their funding comes from insurance companies. They are a shill for insurance companies attempting to avoid paying Lyme disease treatment insurance claims.
I cannot even fathom where the IDSA got their comparisons from. For me, I watch my family and friends involved in everyday life. Yes, people have aches and pains as young atheletes or aging parents. Perhaps they spent hours tending a garden, did 18 rounds of golf, or painted their house. Perhaps they drove 5 hours one way to attend a kid’s or pro sporting event, worked out at the gym an extra hour, or biked for the first time of the season. Perhaps they did a half marathon, hiked a mountainside or windsurfed on a sunny afternoon beach. Perhaps they sit slumped over a desk 50 hours a week, travel incessantly for work, and stress takes over their sleep a few nights a month when deadlines loom. I WISH I could attribute my pain and torturous symptoms to any one of these things, because being able to do ANY of these normal life activities means I am within LIFE and not merely breathing. The “normal aches and pains” of daily NORMAL living does not and will NEVER compare to the daily torture of Chronic Lyme that I , and most others suffer. To feel like someone took a baseball bat to your knees. to compare your waking moments to that of “the day after” a horrible car accident (as I have had before), when you can barely move a single muscle; to be so unsteady on your feet you have to hold onto walls or someone near as you feel the tippy balance as you walk (and for many, are not even ABLE to stand or walk) ; to not find sleep as you wrestle with horrible insomnia night after night for years and wake up mid-night with sweats so bad you are soaked; to have impaired hearing and ringing in ears so loudly that you miss most conversations, and your vision is dimmed by stringy floaters and surrounding eye tissue so swollen you look like a prize fighter; to stumble and fall with sudden paralysis that magically disappears after a few days and is never explained, or sudden strokelike events that leave you babbling and unable to control your mouth muscles; to have your digestive system shut down completely and lose 20-25 lbs in a mere month or so, hungry and starved and dehydrated with no way to push food down a “hose” that simply won’t work. To try in vain to read a few pages of a book and have to re read a handful of times to understand what you read, then completely forget when you pick the book up the next day. Or have headaches so intense you beg for mercy. To have Alzheimer-like symptoms that come and go or brain fog so heavy you have had to stop driving. To be in daily high scale pain, to be isolated, to be jobless and disabled and have medical experts stumped and unable to help you…because people in authority say that this disease cannot possibly progress to this level. And you get diagnosed with a handful of other maladies and get pushed pills your way to mask what have you…and a wish that your very “complicated medical case” would just go away so they can attend to the more basic or easy medical cases. Problem is, yes people are dying of Lyme. Often passed off as other causes. But the bigger problem is the numbers are climbing of those so sick and LIVING with Lyme…unable to work, disabled beyond use…and the IDSA and insurance companies can play games and try to hide the facts. Our government as a whole is going to demand answers soon. Our country cannot survive a sick public as a whole with so many invisible diseases or ones they don’t acknowledge like Chronic Lyme. Eventually all will fall ill to “something” and people of power are not immune to this either. Answers will be demanded and heads will fall. Complacency will not be accepted. There will be too many sick who will demand the help and support they need. And the IDSA and other medical organizations like them can run, but they cannot hide the truth forever. And if the entire government is behind this coverup?…well, then God help us. This is not some little 6 day flu. This is, for millions, for life. It may not always be a death sentence, but it definitely a life sentence without parole.
I’M A SMILING, HAPPY PERSON THAT DIDN’T LET ANYTHING SLOW HER DOWN. BUT, AFTER PULLING A TICK OFF OF ME, MY LIFE CHANGED COMPLETELY. UNDERNEATH THAT EXTERIOR OF SMILES IS A VERY PAINFUL PERSON, WHO IS JUST STRIVING TO survive!
These aren’t just aches and pains..Utter..H! Been living with this,cause the NL wasn’t able to find it.Took 4 different tests by 4 different NL and they didn’t find it.
Everyone was telling me that I had Lyme. A Lyme literate doc, he found the Lyme,Babesia & Bartonella. NOT just going to go away on it’s own, Chronic Lyme does exist! Something has taken over my body,my joints are swollen/achy, just miserable!! Should have been DX’D EARLIER, COULD BE WELL BY NOW, INSTEAD OF SUFFERING. IT’S WORST, SINCE IT HAS BEEN LEFT TO GROW AND NOT TREATED. WE SHOULDN’T BE MADE TO SUFFER, WHEN IT COULD BE FOUND.
Praying for anyone, who is suffering with Lyme.
Not True!
I have lived with this for twelve years now, and it is worse now than it has ever been. I can feel my body slowly falling apart, and I am at the point, I really don’t care.
I have Lyme and many co-infections and many of the virus’s that tag along.
I know what pain is, prior to Lyme, I am a 100% Disabled Veteran that sustained a Traumatic Brain Injury while serving in the military.
I am a recovering alcoholic, in a couple of weeks I will be 28 years sober.
And nothing comes close to the pain that the Lyme disease has caused me,
Alcoholism, Traumatic Brain Injury were a walk in the park compared to Lyme and company. Words cannot explain how much pain I have been in, I have just taken it on the chin and hoped someday they would start realizing the suffering that people are going through.
Well it hasn’t gotten better, and I now understand that this is Evil, it does not kill you because it knows if it kills you, it will die, so it just makes you suffer.
The corrupt medical/insurance system does not respond to people’s suffering, they only respond to people dying. That is the only reason they finally looked at AIDS, to many people dying, not because people were suffering!!!
As long as people continue living they will NEVER do anything!
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