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Delayed diagnosis of Lyme disease has devastating effect on patients

  [ 42 votes ]   [ 7 Comments ] • June 10, 2015

Delayed diagnosis of Lyme disease has devastating effect on patients
Press Release:, San Francisco, CA – May 28, 2015 –A nationwide survey by confirms that current methods used to diagnose and treat Lyme disease are often faulty and inadequate.  The overwhelming response rate – over 6,000 respondents within six weeks – demonstrates the urgency of this issue within the Lyme community.
Sixty-one per cent of those who responded to the survey by reported that it took more than two years for them to receive a correct diagnosis. Only 21% reported being correctly diagnosed within six months of symptom onset.
“Prompt diagnosis and rapid treatment of Lyme disease can prevent long-term complications,” says San Francisco physician and tick-borne disease expert Dr. Ray Stricker. “When diagnosis is delayed, patients miss out on early treatment. The results can be devastating.”
Part of the problem, Stricker notes, is the unreliability standard lab testing for Lyme. “The most widely used lab tests for Lyme have been shown to miss more than 50% of cases. That’s no better than a coin toss.”
Another problem is widespread misunderstanding of where Lyme can be contracted—all 50 states and more than 60 foreign countries.  Almost half (47%) of survey respondents said their Lyme tests were delayed or denied because their physician did not believe the disease was found in their area.
“I got passed around from specialist to specialist,” commented one survey respondent. “Every single one said that my symptoms sounded like Lyme disease, but they wouldn’t test because they said there is no Lyme in Utah.”
The study also found significant delays in treatment due to misdiagnosis. “Lyme disease is often called ‘the great imitator’ because it can mimic other diseases so closely,” says Lorraine Johnson, CEO of
Among study respondents, the most prevalent misdiagnosis was mood disorders (59%), followed by Chronic Fatigue (55%) and Fibromyalgia (49%). Johnson pointed out that when people are misdiagnosed, they not only miss out on appropriate Lyme treatment, but they may also be given medications for conditions they don’t have. “Early diagnosis and treatment is an achievable goal that can prevent the disease from becoming chronic,” she added. One respondent stated “It’s sad to see people nonfunctional from tick borne illnesses because they couldn’t get proper treatment from the onset of symptoms when disabilities could have been avoided.”
The National Institute of Health estimates up to 20% of Lyme patients have symptoms that persist after short-term treatment. The study showed even higher numbers among those with chronic Lyme disease.
Over 90% reported that their short-term treatment had failed, resulting in chronic illness, which can have a huge impact on quality of life. Of those with chronic Lyme, 73% rated their current quality of life as fair or poor and 42% reported they had to quit working because of Lyme. “This disease has cost me my life, my finances, my ability to contribute to society,” said one 35-year-old female respondent.
The study was conducted online from a self-selected sampling of Lyme disease patients and their caretakers.

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Article Comments Post a Comment

Posted by: johncichon
Jun 10, 2015
Wow - does that ring a bell. 22 months with 17 specialist and the best some of them had was that I needed antidepressants. I am not depressed. Finally, at mostly out of pocket payments, I found a doc who knew how to run a test.....and now head way can be seen. It is so seldom I find people who understand the turmoil this brings.
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Lyme disease
Posted by: kodiak5990
Jun 10, 2015
i have been living with Lyme Disease for almost 4 years
now and just finally was diagnosed 6 months ago after
Seeing about 20 different doctors in the last three years
Just to have the testing done - gone thru tons of medications
And injections.......
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Posted by: Cynthiabythesea
Jun 10, 2015 does a survey and the responses are astounding. Up to 90% say their Lyme Disease persists after treatment. 42% say they are disabled to the point of having to stop working. The vast majority of those who have landed in Chronic Lyme hell, were misdiagnosed or undiagnosed for YEARS, which is why they are now crippled and suffering. So WHY are these numbers so completely and conveniently ignored by the CDC, IDSA and NIH? WHY are the fools in governments all over the world, taking their lead from these corrupt, bribed, and conflicted US agencies. The handling of LD from every conceivable medical and social aspect, will be exposed as a national disgrace - it is merely a matter of time. OUR country's health agencies have demonstrated blatant and intentional disregard for patients' health and quality of life, and those attitudes on tick-borne diseases have spread like the pandemic of the diseases themselves, across the globe. This is a global medical disgrace that shows how low the human race has devolved when it comes to compassion and care, versus money and greed.
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Proper Treatment
Posted by: mflaherty28
Jun 11, 2015
For many years lyme patients are not sure that the symtoms they are getting come from a tick bite. When we finally figure it out, some people don't believe you including family members. Drs can't find anything wrong after yrs of subjecting ourselves to one more doctor & one more test only to hear nothing is found.Initial antibiotic treatment does not kill all lyme cells! After 23yrs of being infected I heard it all, have a diminished world from one small insect. The truth is there are resistor cells that hide & resist antibiotics so they still survive, our voices and the power in numbets eill ultimately be the savong hope for some of us, eventually they can't ignore the elephant in the room! Worldwide awareness will create research to find a cure, hope I live to see it! To all my fellow sufferers, read everything, be an informed patient, don't give up and stand up and fight for your life everyday!
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unknown bug
Posted by: jpwoodmio
Jun 15, 2015
I had a bug burrow under my skin on my arm and disappear in Oct. of 2011 at midnight.(probably a tick) I live in upper Mi. My husband and I tried to dig it out, unsuccessfully! The so called Dr. up here gave me TWO anti-biotics at the time & told me I'd be fine. Saw a diff. dr. downstate the next week & she did a lymes test & have been tested a couple other times and all came back neg. BUT, I have been nothing but sick & suffering and quality of life just going down hill ever since. Some bad stuff going on in my body. Hernias fixed, bladder cancers & more. I have fibromyalgia also.... have been diagnosed with that since about 1998.
I've been reading all this & am astonished at how ALOT of this sounds just like me! & Most of the Dr.s have made me feel stupid & dropped the ball, because I'm sure if I still had my doctor of 14 years, I would not be so "out of commission" She went on leave and never came back & the office gave me no explanation ..... haven't found the right person yet. They just ship you off to diff. doctors for this & that & diff. tests.... but, nothing gets accomplished. It is so maddening......
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The harm of delayed diagnosis with lyme disease.
Posted by: TickbittenSF
Jun 25, 2015
I was not included in this questionerre, however I was bit by a black legged deer tick while camping in the Santa Cruz Mountains. After I returned home to San Francisco, I noticed a bright red bullseye rash on my back shoulder blade. I have a background in medicine and remembered seeing the exact same rash on a patient 15 years prior. I studied the rash twice with my employer who diagnosed Lyme disease, from a tick bite (the patient had been hiking) and her bullseye rash was on her leg.
After seeing my bullseye rash after a camping trip, I knew immediately that I had been bit. I fully expected to be seen right away by my HMO Primary care physician, instead, I was told that his first appointment was in 2 & 1/2 months.
At first, I thought the person I was talking with misunderstood my urgency in being seen right away.
Long story short, I was refused treatment for Lyme disease.
I went to a well-known emergency room, when the doctor looked at my e.m. rash, he kindly nodded and confirmed Lyme disease. I then assumed that he would write me a prescription for Doxycycline.
Unfortunately, that didn't happen. He gently explained that because of his e.r. physician status, that he was unable to treat me.
I explained that my primary care refused to see me. I begged the e.r. physician for mercy. He was kind, although he stood his ground on the prescribing of a single antibiotic.
By the time I changed my primary care to another, I was now 2 months into full blown early stage lyme disease. Chills and fevers, aching body, crackling neck etc ... The new primary care physician said he couldn't treat me and referred me to "The Best Infectious Disease"
Doctors in San Francisco. Months were flying by while I waited for appointments and wrong lab tests to be done on me.
I kept asking, "if the e.r. physician confirmed it, saw it, along with a positive history of camping in the mountains in brush,along with every single physician acknowledging the e.r. physician's stellar background" - why then, wouldn't they just pick up a phone and call him for my positive lyme disease diagnosis ???
Yes, I too was bounced around for almost 2 years, all the while this evil Spirochete was invading my entire body, every cell, organ & joint I have. I admit, I knew a bit about Lyme Disease, my cousin had a mystery illness in Utah for years before the 26th doctor who finally asked if he had ever been tested for Lyme disease. The answer was "no" and the 26th doctor ran the correct testing and it was positive. This was right before he boarded an airplane to come see me, so that I could help with his dilemma.
I also remembered seeing and treating the patient who came to the Internal Medicine office where I had worked.
I still had no idea what was going to be the most insane treatment in the art of Medicine. What about the oath each doctor must take before receiving their degree ??? Look it up, read it, then ask me how much more insanity the treatment of Lyme Disease is going to last???
We all know by now that it's not medicine, reality shows the whole problem of cover ups, the big pharma and the huge amounts of money that's running this show,all at the expense of human life.
I'm 5 years into lyme disease that won't go away.
My Lyme literate doctor told me the first time I saw him, "This is going to take longer to treat and it's going to be harder to treat because nobody treated you for 2 years, even though you had a positive bullseye rash within days after camping".
I keep saying to myself, "If I only knew then, what I know now".
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Posted by: bettyg
Jul 15, 2015
i was bitten christmas 1969, but NEVER knew it as i never saw an embedded blood engorged tick, NO bulls-eye or any strange rash.

i got terribly sick, flu-like; my 1st wrong diagnosis was mononucleosis, the kissing disease. this began my 35 years of PASSING THE BUCK for i don't know what's wrong with you.

to find an ILADS, INTL. LYME & ASSOCIATED DISEASE SOCIETY, LLMD, LYME LITERATE MD, email ILADS HQ to executive director, barbara,

LYMEDOCS@AOL.COM giving her the city, state, and age of patient as KIDS drs. are different and many have specific age ranges.

ilADS LYME TREATMENT 2014 GUIDELINES CAN BE FOUND HERE; print them off reading daily to become familiar with and the terminology:

Lyme Disease and Co-Infection Symptoms

------------------------------------------------------------- files/ Lyme_check_list_06_01_12.pdf

The checklist/chart for symptoms monitoring is by Dr Burrascano.

i suggest printing off either lyme, barb, babs, etc. lists if you are having symptoms of these NOW/PRIOR checking off all you have to take to your drs. where they can MEDICALLY DIAGNOSE you without testing.

blood testing should be done only at LYME SPECIALTY DIAGNOSTIC LAB who tests ALL PROTEIN BANDS, like & others like this one.

western blot is 1 of most reliable tests done; elisa tests are worthless! nut in case it shows POSITIVE, count yourself lucky and start prompt treatment.

our ilads llmds say for JUST BITTEN, you need 3 MONTHS STRAIGHT of antibiotics with 2 MONTHS showing no symptoms before you stop antibiotics so you can be CURED!

otherwise, you become CHRONIC LYME and hope for remission; majority of folks relapse.

good luck to you all; STRESS just makes everything else that much worse! i had 27 years of caregiving for my family loved ones sick and dying. it's over now; I'M DOING SO MUCH BETTER with that huge weight off my shoulders!!

bettyg, iowa lyme activist 11 yrs.
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