Posted on Jul 24, 2010 in Blog |

It was a year ago this month that I began the final leg of my journey to a Lyme diagnosis. It originated last July with a ‘Lupus’ diagnosis. As I walked out to my car, I called my sister, the nurse, to tell her the verdict and to find out more about this disease I had only vaguely heard of.

A few days later, my uncle wrote me a relatively short email. The jist of it was, ‘You don’t have Lupus. You have Lyme. Go to a Lyme Literate Medical Doctor and get a Western Blot blood test from IGenex lab in San Diego, CA.’ That email and further conversations with my uncle are reminiscent of the scene from ‘The Matrix’ when Morpheus tells Neo that he has a choice. He can learn what the world really is, the reality of life. Or he can go back to being blissfully ignorant. He offers Neo two pills.

‘This is your last chance. After this, there is no turning back. You take the blue pill – the story ends, you wake up in your bed and believe whatever you want to believe.’ Pause.

‘You take the red pill – you stay in Wonderland and I show you how deep the rabbit-hole goes.’

Since last July, I have been going farther and farther down the rabbit-hole.

In this Lymeland, I have learned the difficulties in finding a qualified physician to correctly diagnose and treat this insidious, invasive bacteria.

I got the Western Blot blood test from IGenex lab and still had two physicians tell me I didn’t have Lyme. The first one said I had bursitis in my hip. He didn’t have an explanation for any of my back pain or other mysterious symptoms. The second physician told me unequivocally I did not have Lyme. He couldn’t tell me what I did have and he was refusing to test me any further to give me a diagnosis.

‘You mean you’re going to stop looking for what’s causing all these symptoms? All my pain?’

‘Yes. We’ll just treat you symptomatically for a few years and then maybe the testing will improve and we can try again,’ he replied.

Translation: I am going to take your money and offer you no explanation and no hope for years before we try anymore testing.

‘But if five of my DNA bands are showing positive for Lyme, how can I NOT have Lyme? I have a ton of the symptoms for chronic Lyme . . . ‘

‘You DON’T have Lyme,’ he snipped.

A month later, I finally got in to see a Lyme Literate Medical Doctor. I lied on the intake form (22 pages), thinking he would never believe that I had suffered from so many of the symptoms listed on the form. I prioritized and omitted the least significant symptoms. But with everything I did list, the LLMD had a plausible explanation for everything that I had suffered from since 1981. Since 1981 . . . .

I left that appointment in shock, incredulous at the information just passed on to me and feeling incredibly relieved that a) a physician believed everything I told him; b) that he knew what was wrong; and c) that he was willing to treat my disease.

One thing my LLMD showed that I hadn’t seen in a long, long time: compassion. He believed me, he explained the disease process to me, he shared the controversy surrounding Lyme disease, and he showed me how he would heal me. He did all this without sounding arrogant, without being condescending. In fact, he emphasized the important of patient empowerment and participation in the healing process.

As Neo did in ‘The Matrix,’ I take a red pill as part of my Lyme treatment to cure this Lyme disease each day.

This past week was a bad week for me. My symptoms worsened for a few days. My LLMD called me twice this week to help me get through this hiccup. Today, I feel better than I have in a couple of weeks. I AM healing.

I don’t ever recall seeing a tick bite on me. I never had the bull’s eye rash. But I did have a lot of weird, unusual, inexplicable illnesses (see the list below). I had chronic pain that moved around my body in a bizarre manner. I thought middle age was really horrible and far more degenerative than I imagined.

Now, I know I was sick. I know my health is improving. I know my life is improving.

This isn’t some dream I will wake up from. I take the red pill every day to cure this disease. I take the red pill, fully aware of the controversy surrounding the diagnosis and treatment process of Lyme disease. And I take the red, tremendously grateful that I took the jump down the rabbit-hole.

Symptom History – these are symptoms that have been connected one way or another to Lyme Disease.

1981
Viral Meningitis- Internist
Possible Epstein-Barr (sleeping 20 hours a day) – Internist
Sun sensitivity develops – Optometrist
Dry eye – Optometrist

1982
Back pain starts Chiropractor

1986
Elevated gastrin level and digestive troubles – Gastroenterologist

1988
Elevated gastrin – Gastroenterologist

1990
Novacaine stops working for dental work – Dentist

1993
Chronic back pain treated from 1993 through 2009 – Chiropractor
Depression – treated off and on from 1993-2009 Psychiatrist/Psychologist

1995
Migraines – Psychiatrist

2001
Recurrent sinus infections start – ENT
Night sweats – Internist
Hot flashes – Internist
Dry skin – Dermatologist

2002
Tooth pain starts – Dentist

My aunt dies in 2002 from untreated Lyme Disease . . . . .

2003
Clumsiness, falling easily – don’t see anyone for it
Muscle weakness – Internist
Swollen joints – Internist
Tooth died – Oral surgeon

2004
Gallbladder removed – Surgeon
H.Pylori / digestive problems – Gastroenterologist
Fatigue – Internist
Hair loss – Endocrinologist

2005
Gastrin level elevated – Gastroenterologist
Hypo-thyroid Endocrinologist
Vitamin D deficiency – Internist
Forgetfulness, trouble focusing

2006
Gastrin level still elevated Gastroenterologist
Antrum Atrophy Gastroenterologist
Headaches Neurologist
Daytime sleepiness and Insomnia – Neurologist
Elevated heart rate – Cardiologist
Ideopathic intermittent right temporal waves – Neurologist
Ideopathic hypersomnia – Neurologist
Word and name search – Neurologist

2007
Gastrin level elevated Gastroenterologist
Incontinence – didn’t tell anyone, too embarrassed

2008
Cough – Pulmonologist
Peripheral neuropathy – Neurologist
Chest pains – Cardiologist
Muscle twitching – Neurologist

2009
Blurry Vision – Ophthalmologist
Rash – Dermatologist
Incontinence – Urologist
Back pain – Chiropractor
Cyst (lipoma) on spinal cord – Neurosurgeon recommends surgery
”Lupus” diagnosis – Endocrinologist
Bursitis in hip diagnosis – Rheumatologist
Vitamin D deficiency – Endocrinologist
Lyme diagnosis – Lyme Literate Medical Doctor