Is There a Definitive Test for Lyme Disease?

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In 1993 I was diagnosed with Chronic Fatigue Syndrome after being bedridden for a summer. I continued to teach dealing with a myriad of illnesses over the years. Most days when I went to work I believe a "normal" person would've stayed home because of how badly I felt. In 2008 with symptoms increasing each year, I fell and broke my nose due to shortness of breath and muscle weakness. I never recovered from the surgery to repair my nose. The regular Lyme test done by my Primary Care Physician came back negative. But when I had the tests done through Igenex Laboratories it showed I had Lyme, Babesia, and Bartonella. This was a complete shock considering I never had a bull's eye rash from a tick bite. The majority of the medical profession needs to open their eyes to the devastation and yes, even death, this disease causes. I have not been able to teach since Nov. of 2008 and have just had to go out on Retirement Disability. I've been on treatment for the last year and am finally beginning to see some improvements. Don't treat this disease lightly because it robs many of their lives, not to mention finances. Open your mind and listen to those of us who have suffered for years.

Nina of MD 2:11PM January 08, 2010

Sadly Lyme is a far more complex illness than so called IDSA experts would have us believe have a look at the presentations to IDSA review hearing http://www.idsociety.org/Content.aspx?id=15026
number 15 Steven Phillips leaves us in no doubt at the problems of seronegativity and persistent infection.
ILADS doctors http://www.ilads.org/ are finding that for many thousands of patients the world over long term antibiotics can relieve symptoms and allow us to get our health and lives back.
It is only arrogance that assumes we are all deluded or hysterical and this is directed by those in power who wish to continue recieving financial rewards from Insurance vaccine production and selective research whilst thousands suffer needlessly.
Perhaps Dr Arling you would benefit by taking time to look at ILADS or better still go along to their conference next year and listen to the available evidence then you can make your statements from a position of having considered all the facts.
Thankfully my illness of 6 1/2 years is over, well at least I have my health back but it took 5 doctors and 3 rheumatologists 4 years to diagnose me with Lyme Disease.

Joanne Drayson 2:01PM January 08, 2010

It is articles like this that perpetuate the myth that Lyme is "hard to catch and easy to treat"
After 20 years of strange symptoms waxing and waning only to become worse each time they returned and then new ones developing affecting every system in my body until every part was malfunctioning...THEN did someone finally put it together and find I have Late Stage Lyme
ELISA done several years ago for Lyme when I suddenly developed a swollen painful knee without injury . Of course this test was negative so Lyme was dismissed...many like me are out there.

Lyme RN of NY 1:30PM January 08, 2010

Wow Dr Arling, you make it sound so simple. If it was I wouldn't be 32 and at home unable to work because of Lyme, co-infections, viruses, parasites, hormone imbalance, thyroid imbalance and a shot immune system.
I was told for 10 years that there was nothing wrong with me. Why did no one think to test me for Lyme?
What do you suggest for sufferers like me? 2 weeks of antibiotics? Yeah, thanks.

Cronic Lymie of CA 1:19PM January 08, 2010

I was mis-diagnosed for 20 yrs. & have been in treatment for 5 yrs. It was too late for any treatment program to help my condition & was told that, after 7 mos. of 4 shots a week of ceftriaxone, there was nothing else to do except go to a warmer climate (cold does me in) & relax!
They diagnosed me with CFS, Fibro, Lupus, MS, ALS & when all were unproductive, I was told it was all in my head. My reaction was where else would it be?
You must find an open-minded doctor, demand the program to be agreed upon by all concerned & tell them that this is a patnership & your vote is equal to theirs.
I was treated by a wonderful doctor who is a director of medicine; however, Medicare put her out of business by withholding all payments on Medicare patients b/c she was treating Lyme patients. She had to sell her practice to the hospital & become an employee in order to get her money. The hospital was happy with the situation as long as she did not bring any Lyme patients to be treated in their facilities. She asked me to not use the "L" word at that office so she could continue treating me. Land of the free? Home of the brave? Where are the doctors who live up to their oath? In the pocket of all insurance companies.

Lenore of FL 12:40PM January 08, 2010

I may not have gotten the ELISA fom UF. I tried to see the head of the ped ID group Dr. Mobeen Rathore and he told me I could drive 3+ hours again and he may or may not be able to see my child. I truly hope that these Doctors will experience what I have gone through for only then will they change the way they behave. Waking up in the middle of the night praying your child is still alive and someone will care enough to run some tests is not the way to live. I must say that I am not singling out the ID docs because I have run into some callous ones from in other specialties, as well as some kind, intelligent and considerate physicians. Dr. Dwyer who runs the North Pinellas Children's Pediatric group slammed the phone in my ear when I told him to check for lyme disease when they also suspect mononucleosis and Dr. Santiago Hoyos just dropped my daughter because he does not want to get involved with any child who has LYME DISEASE. He mis-diagnosed another girl with it and called it mono for 2 years. This is what is happening out there Dr. Arling. PLEASE DELVE further and write an unbiased article.

Dolores of FL 10:51AM January 08, 2010

Time to do a reality check Dr. Arling from the ones who really count - the patients - rather than "studies" and discussions within the medical fraternity. I am not a medic but I am a sufferer - or rather was - of chronic Lyme. And I can tell you three days of doxycyline is a joke. I know because I have been through all that. And thanks to such attitudes I ended up at the chronic stage which we only finally got a grip on with intensive therapy including iv.
I know of so many others who have been through the same thing and only finally been fixed this way. If doctors got down off their high horses and found out what really works they might then start treating people properly and avoid long term healthcare problems - something that in the long run will not only improve people's lives but bring massive cuts in expenditure too.

A. Sufferer 10:38AM January 08, 2010

Well, let's see...I took my daughter with a 104 degree fever, dizziness, sore throat, and weakness to her pediatrician( Dr. Clark) who immediately diagnosed Mononucleosis, and after 4 weeks when the tests were negative she told me to keep going to doctors until they could figure out what was wrong. So I took her to a ped ID doc at USF Dr. Carina Rodriguez, who ran a few tests and told me it was Girls Adolescent Fatigue Syndrome and that it was hormonal and that I should take her for a walk three times a week and she will be fine. Next I saw the PED ID group in Jacksonville of UF who left us in a room for hours while they tried to figure out what was wrong by researching the internet. Even though her ELISA was 2.17 they said she did not have LYME. Next I went to Dr. David Berman at All Children's Hospital who told me she had Fatigue after a viral illness and gave me an article on Chronic Fatigue Syndrome. After much begging on my part he ran a WESTERN BLOT which was highly positive for Borrelia and Ehrlichia, and later called me to tell me it was still fatigue after a viral illness, and then sent to her file that it was CONVALESCENT LYME. He adamantly refused to give her antibiotics when I asked and told him I suspected it was LYME DISEASE on our first and only meeting. Next I drove her to see Dr. Colleen Cunningham the head of ped ID at DUKE and she agreed it was Lyme disease and Ehrlichia and did not know what to prescribe. I volunteered 200 mg doxycycline and that is what my daughter received...Months after her initial presentation with lyme disease symptoms and POSITIVE test results. 200 mg doxy did absolutely nothing because the bacterial infections were entrenched by this time and she could not keep the doxy down...Lots of vomiting ensued. After many more months we found a doc who put her on IV rocephin and after many weeks she was able to sleep through the night and many of her symptoms disappeared. Dr. Berman asked me if I was going to take her to one of those "QUACK" doctors which I presume he was referring to a Lyme Literate Physician. At that point I had no idea who he was referring to. I now know that Dr. Berman is the QUACK...and thank these LLMD's for caring about their patients to research and treat tick borne diseases. I also went to an ID doc and she is Dr. Cindy Mayer who told me she knew nothing about lyme disease and if I test positive I should to to NY and find someone who knows how to treat it. I did test CDC postitive exactly like my daughter and did indeed fly to NY for treatment. I have used the names of these doctors to protect the people who will be routinely mis-diagnosed by them. I also saw another ID doc who did want to treat lyme but would not read one research report on it, because in her words she knew everything she needed to know about lyme disease. She also never changes picc line dressings and charges insurance for doing so. Dr. Vatsala Sastry is her name. I have no respect for any ID doc I have met to date and feel that they are regularly harming the public by ignoring tick borne diseases. Long term antibiotics have proven to improve symptoms in people with tick borne illnesses. More research needs to be done on these complex bacterial/protozonal/viral infections and we will demystify many illnesses that are being mis-diagnosed. Dr. Bryan Arling needs to do some research before he writes articles.

Dolores of FL 10:20AM January 08, 2010

Studies notwithstanding - my daughter contracted Lyme Disease at college and became effectively disabled, having to drop out. A few weeks of Doxycycline improved but did not eliminate the symptoms. A few days after stopping the Doxy, the symptoms ratcheted back up. She went on much larger doses of two different oral antibiotics and became totally symptom-free after several months of that. She started to taper down on the dosage and the symptoms started coming back. She went back to full dosage and the symptoms went away.
So it's clear to me that, at least for my daughter, superaggressive treatment did and continues to improve the outcome.
I don't know what the long-term future holds, but in the present, the aggressive treatment is making the difference between disabled and fully-functional.
The academic studies clearly haven't established the final answer. They established that a particular set of treatments on a particular set of people, evaluated according to particular criteria, didn't "solve the problem". That result doesn't generalize to all situations. With an organism as genetically adaptable as Borrelia, a complete understanding may require studies with much wider scope.

Mitch of HI 10:03PM January 07, 2010

Answer to the title of the article: No.
The 90% accuracy statement is erroneous. The standard 2-tier testing at its best is (48%-) 58% accurate as far as Sensitivity. The the most sensitive western blot tests out there at in the 70%s, but these labs not in conventional use. For tests to be used as a diagnostic tool, it is recommended that the sensitivity runs 95% or better. The lyme tests don't come close to hitting this mark. To give you an idea, the sensitivity of conventional HIV testing is 99.5%.
Of course, this presupposes that the patient's immune system is functioning properly, and can therefore generate antibodies. Which isn't the case with those cases that commonly are missed & go undiagnosed.
And the patient needs to test positive for CORRECT antibodies. Be exposed to those strains that are tested for. The tests fail to capture pivotal antibody information on all the strains in existence in this country, never mind those outside the country.
In other words, tests really can't be used for a diagnostic tool or to gauge infection--active, present or past.
Until there is more research----and accurate tests, that is.
and no way of proving that the symptomology is actually from lingering effects (IOW: NOT from persistent infection) vs. persistent infection. This is why the clinical expertise of doctors in the trenches of their practice is vital to patient health and welfare. and in particular, mds who look at the clinical picture with an integrative eye.

Chris of MA 9:06PM January 07, 2010