7/14/14
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.
I was recently diagnosed with mast cell activation syndrome and I am also looking into high mycotoxin urine tests and deficiencies in my methylation panel.
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.
Rag and Bone Shop of the Heart 
our symptoms and history are very similar.
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Michael, amazing… I’m sorry to hear that. What are you doing to combat this evil illness?
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Right now, trying the Chia ideas. Equilibrant mostly. Hits me hard. Also trying to use CBDs for pain and neuroinflammation—hit and miss so far. Went through very extensive tick-illness treatment, couple doses of IVIG, many other things trying to get well. Still very sick. My current doc is sort of working me through Equilibrant and will try to see Chia in January.
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I’m going to try CBD oil again soon. Gave it a half h hearted try last year. Dr. Chia told me to start on 1/4 pill of Equilibrant for a month, but I haven’t started yet. He also wants me to get IVIG, but I have no idea how. How did you get it? How did you do with it? So sorry you are so sick.
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problem for me with any med mj is that I’ve become super sensitive and get high in a really unpleasant way even w/v. low thc.
1/4 of Equilbrant could really have an effect, go very slow (at least based on my experience).
IVIG. Long stories. 1st time, 2nd year sick, UCLA had me do b/c of high Parvo titers. Did one big dose, insurance did not cover. Did not fix things, had some unpleasant (but normal) side effects.
Tried sub-q IG last year. Insurance DID cover b/c have low IGG/subclasses. Got extremely ill, NOT normal side effects (passed out a couple times alone, extreme sickness in other ways). Kept trying doses, was past intolerable. Went to Stanford to try to find out why I couldn’t seem to handle it, they had no answers (one day appt and tests, $13000)—wanted me to re-do 26 strain vaccination challenge (which I’d done at UCLA years earlier), basically shrugged their shoulders, told me if it made me sick, to stop using it. Stopped b/c no one could tell me why it was putting me so outside of normal as far as effects go.
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Oh god, that’s horrific. Searching for help has cost us so much and I have no income, obviously. Dr. Chia actually said I should try sub-q before IVIG because it would be easier on my system. It scares the crap out of me, but I have no idea how to get someone to give it to me. What is a 26-strain vaccination challenge?? Sounds terrifying.
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Just thought/realized….do NOT be worried about big problems with (IV) IG just b/c of my experience. First time I did a big dose (the IVIG), the side effects were a very bad headache and a weird rash. But was okay. 2nd time, no idea why I had such trouble, but it was unusual. Don’t be concerned at all b/c of what I wrote about it.
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Thank you. Although, I’m concerned with all drugs. I had an anaphylactoid reaction to saline IV fluids, Ffs!
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can you see my email? Feel free to write me.
the vaccination thing..okay, immunologists will give you a series of vaccines and then check at x point in future to see how your immune system responds. Some insurance requires it for approval, also the docs seem to like to do it. It’s many strains of a few things, and they can see if your immune response is normal. UCLA gave it to me, and when Stanford wanted to do it (after SO many other tests), their idea was just to ‘start from scratch’, which is crazy after many years of tests, etc. Meaning, some things are pretty well established and Stanford really didn’t want to deal with larger illness issue. Also, not a vaccination nut, but considering no question my immune system is misfiring badly, thought ANOTHER giant vaccine series might not be such a great idea.
Insurance would cover if you have low subclasses or total IGG. Also, if you have certain kinds of nerve damage (which you might), that’s another approved reason. It can heal that. I’m very bummed it was so hard last time, mainly this thing that many of us get—why do I respond so oddly to things, what is not-normal about me?
You give sub-q IG to yourself, that’s one of the good things about it. It’s not exactly fun, but that part’s not so bad.
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SO, DID HE READ IT? HE MUST HAVE EXPECTED 3 PEOPLE TO WALK IN; U’VE HAD TO DEAL WITH WAY TOO MUCH, MY DEAR! I ASKED MY DOC IF HE’D BEEN READING UP ON ALL THE LATEST CFS NEWS? SMILE. DUH–NO.
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He did read this, BJ, but he didn’t look at the other medical notes and test results I had sent and brought. Oh well. He was one tracked, for sure.
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You’re amazing. So much to have coped with. Looking forward to hearing about the appt. x
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Aw, sweet friend, thank you. ❤
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Check out Lisa Klimas’ excellent blog about all things mast cell: http://mastattack.blogspot.com/?m=1 She’s a scientist with the disease and explains things very clearly. Some people have given her posts to their doctors!
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Yes, I’ve seen this blog before. I’ll read more, thank you!
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[…] few weeks before my appointment, I sent him a letter, a chronology of my health history and a list of my symptoms. He said that was extremely helpful and asked me very little in person […]
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