10/26/2010

My "Interview" with a Doctor of Nuclear Medicine - 10.26.10

I had a really interesting conversation with a doctor of nuclear medicine this evening. I won't put his name here for confidentiality reasons, but he did give me permission to share our conversation on my blog :)

He had emailed me a few weeks ago, hoping to interview me about Lyme Disease after fumbling upon my blog. I responded at first, just stating that I am by no means an expert, but would be happy to answer any questions I could or forward him to someone I know more qualified. I have to admit I was intimidated by the title "Nuclear Medicine". What could I possibly teach this man?

He started by giving me background on his education and reason of interest in Lyme Disease. He lives in Northern California where ticks have apparently become more prevalent in the last few decades. He told me that he had many patients cross his path who questioned Lyme Disease as the cause of their newly acquired psychiatric symptoms. He admitted that he knew little about Lyme Disease at the time and generally didn't go above and beyond to find a diagnosis for these patients because he figured they were just people in denial of having depression or anxiety disorders.

I have to admit I was a bit taken back by this confession. After having felt written off by so many doctors during my struggle to be diagnosed, it hit a soft spot. But I took a deep breath and I kept on my professional head.

He went on to tell me that about 2 years ago, his wife, who just turned 38 years old, started having "panic attacks, mood swings, crying spells, was often tired and went from being an outdoorsy type to a couch potato". She went to her doctor, who told her it sounded like depression and wrote her a prescription for Zoloft.

He said over the next few months new symptoms arrived but each time his wife went to the doctor they told her she needed to give the medicine time to work and that it was only anxiety. The doctor admitted that he began to wonder if his wife was in fact Bipolar or had a severe Anxiety Disorder cause her doctor had run many tests on her and they were all "normal" results.

It wasn't until his wife had a seizure that he asked for tests that many of us would never be able to get. Sure enough when the results came back - she was positive for Lyme Disease and because it had gone misdiagnosed it was in the chronic phase already.

At this point, the doctor broke down in tears and said, "Even I failed my wife. I didn't believe her that something was physically wrong. Her own husband". It was then that I knew this conversation needed to be one of support and not focused solely on education.

Our conversation lasted just over an hour. We decided to continue the "interview" another night and I will post about our discussion once that occurs.

To the doctor this blog is referring to: forgive yourself for being uneducated about Lyme. You very likely saved your wife from a lifetime of misery with undiagnosed Lyme due to your pull in the medical field. See the positive of the lesson learned. Feel pride that you are another doctor that has opened his eyes to the need for education about Lyme Disease and other tick-borne infections! Pay it forward and educate other doctors who can in turn make a difference to many peoples lives. I look forward to talking soon :)

10/08/2010

Lyme Disease - A Three Stage Progressive Infection

I assume I'm pretty safe in guessing that most people are unaware that there are 3 stages of Lyme infection. The more you educate yourself about the symptoms of Lyme Disease, the earlier you could advocate for testing. If you or someone you know is experiencing symptoms that doctors don't have an explanation for or write off as stress or other diseases mentioned in an earlier post about misdiagnosis this information may be the key to a diagnosis. So read about the 3 stages and educate a friend about them :)

Stage 1: Early Localized - day of bite up to 4 weeks
In this stage of lyme infection, many patients have no symptoms. Others may experience:
- a Bulls-Eye Rash (erythema migrans)
- Flu-like symptoms
- Fatigue
- Headache and neck stiffness
- Fever and/or chills
- swollen lymph nodes

Stage 2: Early Disseminated - 4 weeks to 4 months
Stage 2, known as early disseminated, begins approximately 4 weeks after the initial bite by an infected tick. Many people have no symptoms prior to this stage, when more noticeable symptoms begin occuring. These symptoms may include:
- Significant fatigue
- Joint pain
- Skin rashes in several places on your body that develop as the infection spreads (not a Bulls Eye Rash)
- Heart palpitations/Irregular heart beat (in some cases severe heart problems have been reported)
- Pericarditis (inflammation of the lining of the heart)
- Dizziness or fainting
- Meningitis (swelling of the lining of the brain)
- Poor memory
- Difficult with concentration
- Swelling of the liver
- Carpal tunnel syndrome

- Bells Palsy (paralysis to one side of the face cause by paralysis to one of the facial nerves)
- Conjunctivitis
- Numbness, weakness or pain in the arms or legs
- Vision changes due to damage to deep tissues in the inner eye

Stage 3: Late Persistent or Chronic
Sadly, the majority of people now being diagnosed with Lyme Disease are in the third stage and are often experiencing heart, neurological and joint symptoms. Symptoms at this stage are vast! It would take me weeks to try and list them all. Below is a very incomplete list of commonly reported complications of chronic lyme infection:
- Swelling and pain in the joints (often knees)
- Chronic Lyme Arthritis, which causes recurring episodes of swelling, redness, and fluid buildup in one or more joints that last up to 6 months at a time
- Severe fatigue (often diagnosed as Fibromyalgia, Mononucleosis or Chronic Fatigue Syndrome)
- Light sensitivity
- Optic nerve atrophy and eye swelling
- Numbness or tingling in the hands, feet or back
- Neurological changes, including problems with memory, mood, or sleep and sometimes problems speaking or retrieving words
- Anxiety or depression
- Dementia
- Psychotic episodes or episodes of confusion
- Paralysis
- Dysphagia (Swallowing/Feeding Disorders)
- Loss of motor control (Dyspraxia)


Top Mis-diagnoses:
- Multiple Sclerosis
- Parkinson's Disease
- Alzheimer's
- Lou Gehrig's Disease /Amyotrophic Lateral Sclerosis (ALS)
- Chronic Fatique Syndrome
- Fibromyalgia
- Lupus
- Scleroderma
- Sudden Infant Death Syndrome (SIDS)
- Autism
- ADHD
- Irregular Heart Rythm, Angina, Heart Failure
- Eye Inflammatory Reactions
- Panic Attacks / Anxiety Disorders
- Depression
- Schizophrenia and/or Psychotic Episodes
- Obssessive Compulsive Disorder (OCD)
- Bell's palsy (Facial Paralysis)
- Blood Coagulation
- Pulmonary Embolism
- Meningitis
- Anorexia Nervosa
- Athritis
- Asymmetrical Hearing Loss
- Deafness (sometimes sudden)
- Tinitus (ringing in the ears)
- Brain Tumor or Aneurysm
- Cortical Blindness
- Photophobia (Light Sensitivity)
- Dementia
- Demylinating Disorders
- Miscarriage or Fetal Death
- Migraines / Severe Headaches
- Acquired Immune Deficiency Syndrome (AIDS)
- Hypothyroidism
- Horner's Syndrome
- Influenza (in earlier stages)
- Vertigo (Dizziness)
- Tourette's Syndrome
- Syphilis
- Transient Ischemic Attack
- Stroke
- Transient left ventricular dysfunction
- Trigeminal Neuralgia
- Epilepsy (Seizure Disorders)
- Pericarditis
- Non-Hodgkin's Lymphoma

(Please note that is a VERY small list of the many diseases/disorders Lyme can mimic! Please do your research!)



Many people have emailed asking what they can do to help. Here's what you can do.....educate two friends about the stages and symptoms of Lyme Disease. Tell them to education two friends and ask those friends to educate two more friends. Let's start the cycle of education and bring attention to a disease millions are silently suffering from at this very moment and don't even know it!