Dear Dr. Chia,
I am flying from Seattle for my initial appointment with you. I have been housebound for almost two years and this will be my first time traveling more than 45 minutes away from my home (which was to see a doctor).
I want to make sure the trip is advantageous and takes as little toll as possible on my body. I thought I would send you a synopsis of my health history in the hopes that you will be able to read it in advance.
I became ill with what was eventually diagnosed as ME on November 1st, 2011. It started as severe recurrent chills, shakes and drenching night sweats. They would last many hours throughout the night and then resolve for a week or two. I was originally diagnosed with malaria via a positive blood test, but two subsequent blood tests were negative, so we did not pursue treatment with anti-malarials.
Eventually, the drenching sweats were nightly and there were a host of other symptoms. Six months later, I had to leave my job and, three months after that, I became housebound. Symptoms have shifted and changed: Pain and sleep dysfunction became my biggest concern, the sweats eventually stopped and the pain abated, but flu-like symptoms remained. Chronic headaches, “post-exertional malaise”, incapacitating brain fog, slurring, low blood pressure, vision issues and what feels like a cellular energy deficit (fatigue, exhaustion don’t describe it) still remain my most constant symptoms.
When this all started, I was a workaholic, chronically stressed, had recently suffered a diarrheal illness and gotten a flu vaccination. Although I had a long history of idiopathic anaphylaxis, autoimmune angioedema and thyroid disease, I felt and looked healthy and had a full life. ME has stolen everything.
Below is a timeline of my health history.
Thank you very much for taking the time to read this and I look forward to meeting you.
- 1973: Born, heart murmur, lots of inoculations.
- 1973-80: Lots of international travel.
- 1974-78: Chronic cough, asthma, pneumonia twice, two ear infections. Antibiotics. Positive skin prick tests to many things.
- 1980: Moved into basement of damp home, probable mold.
- Teenage years: chronic headaches, constipation, sore throats. Eye swelling. Severe dysmenorrhea with periods. Dxed with Raynaud’s syndrome.
- 1987: Tonsillectomy
- 1988: BCG vaccination for TB and rubella.
- 1989: Very sick with high fever. Suspected meningitis.
- 1989 or 1990: Bad food poisoning.
- 1995: Bad food poisoning.
- 1996: Tetanus, polio, Hep A, Oral Typhoid for international travel. Got sick in Honduras after eating conch soup.
- 1997: Terrible angioedema episodes.
- 1999: Ice-pick headaches. Hep B vaccination series.
- 2001-02: Full-blown anaphylaxis (idiopathic), ER visits.
- 2003: CAT scan and lumbar puncture for chronic headaches. Idiopathic neutropenia, low TSH. Chickenpox exposure (husband) and vaccination.
- 2004: Started having problems with hypoglycemia, which continue to this day.
- 2005: Acute cervical spine sprain that has caused me problems ever since. The first episodes of vasovagal syncope and collapse with ER visits and very low pulse and BP. These have continued intermittently every year since. Suspected lower-degree anaphylaxis.
- 2009: Toxic multi-nodular goiters on my thyroid. Radioiodine ablation and started daily T3 and T4.
- 2010: Found osteopenia.
- June 2011: Traveled to Ireland. Angioedema: Eye and tongue swelling. Syncope/anaphylaxis episode.
- July 2011: Acute bronchitis. Dxed with autoimmune urticaria and angioedema and many allergies via skin prick testing.
- August 2011: Traveled to Virginia. Bad GI illness (diarrhea, probably viral, in ER getting fluids. No vomiting) 3 days after plane ride, day or two after swimming in lake.
- September 2011: Lots of dental work, getting veneers without epi (many, many injections).
- October 19th 2011: Flu vaccination.
- November 1st 2011: Beginning of M.E.
I also included a list of my symptoms, which can be found here.