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» LymeNet Flash » Questions and Discussion » General Support » New Book on Chronic Lyme

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Author Topic: New Book on Chronic Lyme
Ann-Ohio
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Porochista Khakpour a well-known and well-honored writer, is a chronic-Lyme disease patient and has a new book out next week, called simply “Sick”

At this link, you can read the “Author’s Note” section if you go to “Look Inside” and scroll down.

https://www.amazon.com/Sick-Memoir-Porochista-Khakpour/dp/006242873X

I am glad she includes the costs of Lyme disease - so far. She estimates that her bills have reached $140,000.

And she points out that the average costs of treatment for late-stage Lyme disease patients are estimated at between $20,000 and $200,000.

The annual cost of Lyme disease in the US as of 2017 is estimated at 1-3 billion dollars.

One of her reviewers says:

“Thank you, Porochista Khakpour, for writing an unflinchingly honest, complicated memoir about living life with Lyme. Sick should be required reading at every medical school!” (Kathleen Hanna)

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Ann-OH

Posts: 1033 | From Ohio | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
Brussels
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I'm not sure it's a good reading, if you have a lyme brain.

It is pretty confusing, and certainly paranoid (which is partly neuro-lyme, toxins, depression, anxiety, PTSD all combined)

I sincerely wouldn't like to read that if I were still sick with lyme, because my own misery was waaay too much to cope with already,

... but it is an informative book for those who would be interested to know how it is, to have a lyme life and a lyme brain.

Like doctors, practitioners, family, friends, co-workers...

I think people with lyme already know what it is, even too well. It's more for the ones who don't know and would like to have an idea.

I just read the insert, not the whole book. I hope there are other parts that are more useful for the patient too.

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Blackstone
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What prompted me to visit the site today was in reference to this! The New Yorker has written an article in its current edition, reviewing the book.

You can find it https://www.newyorker.com/magazine/2018/06/04/memoirs-of-disease-and-disbelief

What's more is that users of the Mozilla Firefox web browser (which I highly suggest for a number of reasons), have the option to list some of the most popular content saved through Pocket (a bookmarking site also owned by Mozilla) when a user opens a new tab.

Within that sub section, this New Yorker article is showcased, meaning high visibility for something Lyme related! For an example of what I mean check out - https://getpocket.com/explore/trending?src=fx_new_tab&cdn=0 - you can find the article above listed there, at least for now. The list does tend to change quickly with so much new content, but still this is a form of awareness.

Regarding the book itself I've not yet read it, but if the New Yorker review is accurate, I am concerned that it may not paint an entirely favorable picture of Lyme patients if some of the more negative perceptions and behaviors ascribed to the author are extrapolated to the community as a whole.

I will probably pick the book up myself sooner or later and am interested to hear what others think, Lyme patients and otherwise.

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Ann-Ohio
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Just read it. Thought it was a painful, but very accurate read.

She is an excellent writer and admittedly no angel, but so willing to tell exactly what it feels like to suffer not only the disease, but the ignorance and disrespect of the medical people she encounters.

It came out in paperback right away, so isn't costly, and should be
in libraries soon.
Worth a try.
Ann

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Ann-OH

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Keebler
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Indeed, an excellent writer. I got fairly far into the "look inside this book"

My eyes and energy gave way and I'll have to finish the excerpt later. Already, though, her excellent writing skill makes it easy to comprehend.

It's not costly but I'll still have to wait till next month to order.

I must add that for those who might be saddened by her subject - how having to go to the ER after an accident still caused "lyme shame" to be brought down upon her -

like the film "Under Our Skin" - her experiences mirrored so many of my own. This is a balm of sorts, too, confirming the silent biases that many of us have faces in dozens of medical offices over dozens of years.

The realization of the courage it takes to have chronic lyme is fully alive even just barely into the book. We should all celebrate that courage.

thanks so much tor sharing the link. I look forward to reading it.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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