Tuesday, December 13, 2011

Adventures with Lyme Disease, Fall 2011

My Story
Cyane was bitten by a tick while working near the woods of Fairmount Park in Philadelphia in May 2011.  The insect(s) were not observed.  Within a week, I started to experience intense fatigue, chills and sweating, and then a bulls-eye rash.  

The doctor diagnosed Lyme Disease and prescribed 3 weeks of antibiotic Doxycycline.  I felt better.

In August, weird little pains and skin sores started.  On September 21 I had a nightmare of being attacked by an army of soldiers.  Shortly therafter, I started to feel really bad, with intense fatigue, nausea, and muscle spasms.   Also, intense involuntary muscular twitches and weakness.

September through November was a terrifying period where symptoms rapidly worsened, see list of symptoms below.  It was as if all body systems were going haywire at once: digestive, neural, cognitive, muscular, skin, etc.  There were no clear external manifestations, but energy was reduced 50%, I felt terrible, and was unable to think or sleep. 

During this period, I went to 8 doctors.  Four of the doctors, who look at tick diseases through a narrow window, observed that what was happening was not Lyme Disease, since I had been treated early.  Two doctors said they were not sure sure and recommended further testing.  The two doctors, who look at Lyme through a wider clinical symptoms picture, thought that Lyme plus other tick-borne diseases were causing my malaise and recommended treatment against the infections and also to bolster natural strength and immunity.

After starting antibiotics I felt immediately better.  Thinking clarity returned, along with more normal sleep patterns.  After taking antibiotics for over a month, fatigue is still a factor.  It will be a long road to try and get rid of all parasites and recover robust function.  Unfortunately, it is not an easy and straightforward process.  Lyme Disease bacteria and the other infectious organisms transmitted by ticks are not easily killed off even by antibiotics.  Also, they attack the body in ways that make it more vulnerable.  After harboring Lyme spirochaetes, as well as possible Babesia and Bartonella, my white blood cell numbers were very depressed. along with vitamin levels.

If I had followed the recommendations of the doctors with a narrow view of Lyme, my future health would likely have been compromised and even destroyed.  I was able to find doctors who understood tick borne diseases and were able to treat them only through talking to other people who have suffered with Lyme, or friends who had tips and suggestions.  

Lyme Debates

It is unbelievable that the fastest growing infectious disease in America can not be accurately diagnosed - it is impossible to know for sure whether someone is infected or not.  Tests are commonly prescribed, but they measure only antibodies.  So, tests show whether one has been exposed and not whether one is currently infected.  Almost 30,000 people will be officially diagnosed with Lyme Disease each year.  Given uncertain definition and diagnosis, it is thought that the actual number of people affected each year in America is over 300,000.

Lyme Disease is not the only pathogen carried by ticks.  Lyme Disease is Borrelia burgdorfii, a spiral shaped bacteria like syphilis.  There are many variants of Borrelia.  Other parasites include:  Babesia (operates like malaria and not killed by antibiotics), Bartonella, Mycoplasma, Anaplasma, Tularemia, Ehrlichia,  and Rocky Mountain Spotted Fever.

When one is infected (or not, depending on who is diagnosing), one automatically steps into the "Lyme Wars," that  rage in the medical community.  One camp, headed by the Infectious Disease Society of America (IDSA), believes Lyme Disease is hard to catch, easy to cure, and co-infections are rare.  The other camp, headed by the International Lyme and Associated Diseases Society (ILADS), believe that Lyme is easy to catch, hard to cure, and co-infections common.  Unfortunately, the two medical sides are polarized and there is little middle ground.  You can predict what a doctor will say based on which camp they are in.

IDSA doctors have a narrow definition and limit treatment.  ILADS doctors have a wider definition and treat more aggressively, based on clinical symptoms.  Unfortunately, the IDSA approach is dominant and doctors who take an ILADS approach are hard to find and oversubscribed.  The result is that many people who have had tick bites and feel a host of really bad symptoms do not get treatment for tick borne diseases.  They may end up permanently impaired.

Lyme and Associated Diseases Possible Symptoms
The symptoms of tick-borne diseases are various.  Often the only pattern is that there is no pattern/ localization to one place.  When a host of seemingly unrelated and serious symptoms appear, tick-borne illnesses should be considered.

  Joint pain, swelling, stiffness
  Muscle pain or cramps
  Aching or burning in palms or soles of feet
  Bone sensitivity, esp. of spine
  Muscle weakness
  Fibromyalgia (generalized muscle pain and tenderness)

  Bell's Palsy (partial facial paralysis)
  Burning or stabbing pains
  Twitching of muscles
  Warm or cool sensations
  Diminished reflexes
  Impaired cognition

Mental Capabilities
  Memory loss
  Confusion, difficulty thinking, 'brain fog'
  Declining performance in school or work

  Anxiety, panic attacks
  Sleep disorders

  Diarrhea or constipation
  Abdominal cramps
  Frequent need to urinate, irritable bladder
  Weight gain or loss
  Nausea, vomiting, upset stomach

Respiratory and Circulatory
  Shortness of breath
  Persistent head congestion
  Night sweats, unexplained chills
  Heart palpitations

General Well-Being
  Extreme, persistent fatigue
  Unexplained sweating
  Swollen glands
  Unexplained hair loss
  Rashes, lesions, or skin disorders

A Few Resources to Start With:

On the Internet:  almost unlimited, but start with:
Joseph Burrascano.  2008.  Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick-Borne Illnesses.

Douglas W. Fearn.  2007.  Lyme Disease and Associated Diseases:  The Basics, A Plain-Language introduction to tick-borne diseases.  The Lyme Disease Association of Southeastern Pennsylvania, Inc. .

International Lyme and Associated Diseases Society.

Lyme Disease Association.

Pamela Weintraub.  2009.  Cure Unknown.  St Martin's Griffin.  ISBN 978-0-312-37813.

Constance A. Bean, Lesley Ann Fein.  2008.  Beating Lyme, Understanding and Treating This Complex and Often Misdiagnosed Disease.  AMCOM, American Management Association.  ISBN 978-0-8144-0944-2.

Dr. Qingcai Zhang and Yale Zhang.  2006.  Lyme Disease and Modern Chinese Medicine.  Sino-Med Research Institute.  ISBN 0-96772131-8.  Available from Zhang Health Clinic;

"Under Our Skin" available for download from Netflix.

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