My Diagnosis Story

One of my DailyKos Lyme Disease Awareness cohorts had the wonderful idea to seek out and publish the stories of how DailyKos members were diagnosed with Lyme Disease. Of course, I was to be included. When she asked me, I thought, "Oh that's easy. I must have written that up on my blog. I can just give a copy of that." Only, I hadn't. So, as part of the personal context to my writings here, I will paste what I submitted:

I had been tired alot, but I thought that was to be expected, as a business owner and mother of a young child. However, by the summer of 2005, I knew something was wrong. I had purposefully structured my schedule to make sure I was getting rest for the past 6 months and still, I was profoundly tired. Moreover, I was waking to powerful burning/tingling feelings in my hands and feet and lips. My early thoughts were that I had been poisoned, as I had had similar feelings with MSG poisoning years ago. I was also experiencing cognitive changes. Where I had always been a compulsively organized person, I couldn't keep an organizational system going and my "to-do" list was falling apart. I was forgetting very important things and losing things all the time. Me. The person who had the same pair of sunglasses for 12 years. I think I'd had my keychain for about 20. Those were gone. And my constantly organized house was a mess.

I became very concerned when I started having so much pain in my feet and knees and hips that I couldn't walk. When I woke up one morning unable to see - it was as if I were looking at the world through a wall of rushing water - for a couple of hours, I knew it was time to do something. Not inclined to go to the doctor (hadn't seen one in 15 years), I went to my acupuncturist. After a couple of visits, he gave me a clear directive, "you have Lyme disease. Go to a doctor and get antibiotics." My acupuncturist who loathes antibiotics was telling me to go get them. We'd known each other for about 12 years, so I took him seriously. In August of 2005, I had an appointment at a local clinic. Here's what ensued:

* Tested negative for Lyme in August 2005
* Was sent to a neurologist in Feb 2006, hospitalized, then told it was just stress
* Went to a recommended doctor in Spring '06, who diagnosed me with "chronic heavy metal poisoning"
* after 9 months of chelation, was getting worse - more debilitating pain and weird cognitive episodes of profound confusion doing common activities, getting lost in my own neighborhood, unable to recognize friends
* Spring of '07 was told by PCP that I was a psychiatric case
* Summer of '07, was informed by acupuncturist of 55% inaccuracy of Lyme test
* Aug '07, paid $1,000 out of pocket for more tests, which came back definitively positive for Lyme
* Tried oral antibiotics for 6 months, but couldn't tolerate them.
* Moved to bicillin injections in May '08. Saw some improvement
* Was retroactively denied the bicillin by my insurance company in July '09

In April of 2009 I tested positive for two auto-immune disorders - Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Dysautonomia, which explained why I wasn't responding well enough to the antibiotics (tests I would not have gotten if it weren't for  ellinorianne and the amazing community of dKos). I needed a much more serious treatment to get my immune system functioning, something called intravenous immunoglobulin (IvIg). IvIg costs anywhere from $4,000 to $17,000 per treatment. I needed to have it 4 times a month for at least 9 months and possibly years. This wasn't going to happen unless insurance covered it. Insurance wouldn't cover it unless I found an in-network neurologist to confirm the diagnosis and issue the orders. Given that the etiology of my diagnoses was Lyme, that proved challenging. Doctors in Massachusetts run screaming from Lyme patients. It is a particularly hostile state to docs who try to treat Lyme patients with anything more than 4 weeks of antibiotics. Though CIDP can be a stand alone diagnosis and the well-established treatment is IvIg, every doctor wanted to see my entire history and couldn't look past the Lyme Disease implications. Finally, I found one who would see me, only she had her own health problems. I was scheduled to see her in September of 09, but that was delayed until February of 2010.

Since then, a change from HMO to PPO has meant that my out-of-network neurologist is now recognized by the insurance company. I have had 4 treatments of IvIg so far. The first real ray of hope in 4.5 years. And, I'm a lucky one.