What Itís Like to Live with Lyme Disease

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Nov. 1, 2021 — From the very first page of Ross Douthatís new memoir, The Deep Places: A Memoir of Illness and Discovery, itís easy to feel like youíre in the room with The New York Times columnist as he details his very painful 5-year battle with chronic Lyme disease.

Douthatís journey began in the summer of 2015 when he moved with his family from Washington, DC, to a farmhouse in Connecticut. Thatís when he first acquired a mysterious sickness that left him wracked with pain and started his mission to figure out how to get well.

Douthatís vivid descriptions of the myriad traditional and alternative medicine treatments he tries and the doctors and patients he meets along the way is a must-read for anyone with a chronic disease, in this case Lyme, which affects 476,000 Americans every year, according to the CDC.

WebMD sat down with Douthat to find out a little bit more about his journey and what he recommends to anyone with Lyme:

WebMD: Your book is, at times, tough to read. You donít shy away from sharing how much pain you were in, especially the first 2 years of your illness.

Douthat: At least one reviewer has said the book is harrowing. What I tell people is that itís harrowing, but itís also a page turner. Itís not a difficult read and the story ultimately offers various kinds of hope and optimism. Thereís also spiritual and psychological elements woven in that are helpful. In that sense, you can expect more than just a harrowing experience.

WebMD: During the really tough days what helped in terms of support from friends?

Douthat: I think people are really good at helping other people in a crisis.

What you see during earthquakes and natural disasters is that thereís this period when experts worry about a descent into lawlessness — and yet people pull together.

Theyíre aware theyíre being asked to be heroic and supportive. The challenge with chronic illness is there isnít an occasion or a discrete set of tasks to help someone. Thatís why I stress that if youíre trying to help someone with a chronic illness, donít get discouraged.

Often if you offer your presence and give that person an opportunity to talk and complain, itís the best thing you can do. It also helps because it takes some pressure off the people that are complained to the most.

WebMD: Whatís the weirdest remedy you tried?

Douthat: I would say the frequency machine. Itís alleged to use sound frequency to shake up and shatter bacteria. That to me was the weirdest followed by someone placing magnets all over the parts of my body where I had symptoms. I was aware that I had passed the fringes of medicine and was out beyond the frontier.

WebMD: How are you feeling today?

Douthat: I generally describe myself as 90-95% better. Iím not symptom-free.

Most of my symptoms are pain, which isnít true for a lot of chronically ill people who have severe fatigue. I was fortune to have pain instead.

There are cycles where I will go for 4 to 6 weeks with pain as a minor annoyance and a week or 2 where it seems to come back.

At the most intense point in my illness I was taking 10 to 15 antibiotic pills a day. That was barely enough to keep the infection in check. Now, Iíll take an antibiotic every 6 to 8 weeks.

Itís still so strange to think that I would be taking antibiotics after 6 years of an illness.

WebMD: Why was it so important for you to share your personal story?

Douthat: For one, I write for a living and, as a writer, you want to write interesting things. This was a very interesting thing that happened to me.

To the extent that itís good to interpret any suffering as a gift, something you can make something out of, that felt appropriate.

Second, there are some things I wish I had known about the complexities of chronic illness and the importance of being your own advocate. I also now recognize the importance of modern medicine (and also its limits).

Iíve figured out how to fight my way through.

WebMD: Whatís your biggest piece of advice for those with Lyme?

Douthat: Donít be passive.

In this case in particular the medical communityís impulse runs to inaction because we donít know exactly how to treat this, we donít have double-blind controlled trials and a silver bullet.

I found that most doctors have a do-no-harm attitude and theyíll say ĎGive it 3 months, give it 6 months, see how you feel.í Sometimes that works, but for a lot of people, it doesnít.

Itís your body and itís your life. I now know that a really severe illness like this steals your life away.

You shouldnít wait for it to come back on its own. Instead, look for doctors who can help you and talk to others about whatís worked for them.

Your path to recovery will be unique, but you need to find it for yourself. It wonít come to you.

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