Sunday, February 3, 2013

Lyme Disease--The Silent but Serious Epidemic

In 1975 a new disease seemed to emerge around Lyme and Old Lyme, Connecticut.  It was discovered in 1981 to be a spirochete bacteria spread by the deer tick, and named Lyme Borreliosis, or Lyme disease. 

Not all people with proven Lyme disease get all the symptoms, but a typical acute infection of Lyme disease starts with a "bullseye rash" around the tick bite called "erythema migrans."  Sometimes there isn't a bullseye but simply a central reddening.  This is followed by fever, headache, muscle aches, fatigue and depression.  However, 50% of those with culture proven borreliosis have no memory of a tick bite or a rash.  They may think they have a virus or the flu.  Some Lyme disease resolves on it's own, but usually antibiotics are prescribed for 2-4 weeks. If acute Lyme is a possibility, antibiotics should be given immediately.  Testing does not show positive right away.  Untreated Lyme disease can become a serious and debilitating disease.

If left untreated it may progress to migrating pains in muscles, joints and tendons.  Lyme arthritis usually affects the knees. In a minority of patients, arthritis can occur in other joints, including the ankles, elbows, wrist, hips, and shoulders. Pain is often mild or moderate, usually with swelling at the involved joint.

It may affect the heart with arrhythmias and dizziness.  After several months, it may affect the nervous system.  This can include facial palsy, with paralysis on one or both sides of the face, or meningitis, which causes headaches, neck stiffness, and sensitivity to light.  There may be shooting nerve pains, numbness, tingling in the hands and feet, abnormal skin sensations, memory loss, difficulty concentrating, insomnia, mood changes, and even altered mental status and frank psychosis.

After several months, untreated or inadequately treated patients may go on to develop severe and chronic symptoms that affect many parts of the body, including the brain, nerves, eyes, joints, urinary system and heart. Many disabling symptoms can occur, including permanent paraplegia in the most extreme cases. The associated nerve pain radiating out from the spine is termed Bannwarth syndrome.

Often people with chronic Lyme get co-infections because the Borrelia kills off the immune system.  These can cause any number of other serious symptoms.  I won't go into the different infections here, but this is one of the reasons chronic Lyme is so difficult to treat.  If you have lots of symptoms with no known cause, ask your doctor to test for Lyme Disease using the Western Blot method.  If ANYTHING shows positive, even if it doesn't fit the CDC criteria, antibiotics should be started to see what the response is.  Both improving and worsening indicate that yes, it is probably Lyme disease.

Lyme disease is the most common tick-borne disease in the Northern Hemisphere.  It is prevalent throughout the United States and throughout the world.  However, most doctors sadly don't believe that.  You can see by this map that, even though it is "low risk," there is risk of getting Lyme disease in Utah, but most doctors here in Utah claim it is not here and won't test for it.  I had one patient that tested positive and he took the test to his personal doctor, who even in the face of a very positive test said, "There is no such thing here in Utah."

Most doctors and insurances refuse to accept that Lyme disease can become chronic, even though there is ample proof that it does.  Many insurance companies refuse to pay for more than 30 days of antibiotics for Lyme disease.  Chronic Lyme disease is difficult to treat even for knowledgable doctors, and many patients don't have the funds they need to treat it adequately, IF they can find a doctor that is "Lyme literate."

Part of the problem is because the Borrelia is so good at destroying the immune system that it can't amount a proper defense. Most of the current testing for Lyme includes antibody testing. If the immune system cannot create antibodies, the test may show as negative or indeterminant. If suspected but the testing is negative, antibiotics should be given for 30 days and then test again. Often it may show positive by then.

This disease is spreading like wildfire.  It is now proven to be in Europe.  My niece recently came home from an LDS mission in Poland with a lot of different symptoms and her testing came back positive for Lyme disease.  But if she had seen another doctor she wouldn't have been tested or treated.  My cousin's son became severely ill on his mission in Canada and after several years was on the verge of death before he was diagnosed and able to begin treatement.  He has improved but is still extremely sick, and his wife has now contracted it: it is assumed through sexual contact.

Doctors who treat Lyme are often persecuted by their medical boards, insurance companies and the government.  Those with Lyme and the doctors who treat them are asking everyone to sign a petition to allow proper testing, recognition and treatment of chronic Lyme disease.

Please serve those who are so severely ill with chronic Lyme disease by going to this site and signing the petition to get it recognized, tested properly, treated properly, and paid for by Medicare, Medicaid and private insurance.

Thank you!

Until we meet again,
Dr. Judi


Anonymous said...

Thank you so very much for writing this post on Lyme disease. It is refreshing to see something positive and informative. I am chronically and severely ill with Lyme disease in Canada. We have no lyme literate doctors here due to neglegence and ignorance. I am sharing your blog and this well thought out post. Thank you so very much.
Luba, Toronto Canada

Anonymous said...

Thank you for writing. I have Lyme and coinfections and I appreciate finally seeing some accurate information. I am one of the very unlucky that contracted Lyme from an area (east Tennessee) where it is supposed to rare.

Joanne said...

Good to see another doctor wanting to learn more about Lyme Disease. I am sorry for your families experience and wish them both a good recovery.
I live in UK and have been fortunate to have made a good recovery although still a few lingering symptoms which do improve on antibiotics given for a long troublesome ear infection.