Book Review: This is How I Save My Life by Amy B. Scher

This Is How I Save My Life: From California to India, a True Story Of Finding Everything When You Are Willing To Try AnythingThis Is How I Save My Life: From California to India, a True Story Of Finding Everything When You Are Willing To Try Anything by Amy B. Scher

My rating: 5 of 5 stars

5 stars.

Thank you to GoodReads, the author Amy B. Scher, and @Gallery Books / Simon & Schuster for this Advanced Readers Copy to review.

Over the years, several people have told me I should write about my journey with Lyme disease and chronic illness. Now I don’t need to, Amy Scher has told a story that mirrors mine, except I’m hoping to try stem cell therapy in the next year or two; it’s something I’ve been researching since I was first disabled in 2009. Almost ten years later, I’m almost ready to try it, and this book comes out. Synchronicity.

What she writes could be a page out of my life (pg 163):
“I could never do what you are doing.”
Honestly, I’m no superhero. You could totally rock this too, if you had to. In fact, we could all do anything if we absolutely had to. I once thought I could never do what I’m doing either, except for now I don’t have a choice and that’s exactly how I’m doing it in the first place. Some nights when I go to bed, I think to myself ‘I cannot do this, not for one more day.’ Eventually I fall asleep…and then…I wake up with a life that is just waiting for me to wade through all over again. You do it because even when — especially when — you think you can’t you’re somehow still making it happen. And you do it every minute of every day — no breaks allowed — because if you don’t every single thing that you’ve barely been holding on to might fall apart too.

The writing in this book is outstanding. The honesty is heart wrenching.

I’m done, because I don’t have the energy to type any longer.

If you’re chronically ill, or know someone who is chronically ill, you should read this book. If you have Lyme disease, this is a must.

4/11-23/18

GoodReads review

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I wish I still lived in Boston 

Lit Crawl Boston – Boston Book Festival
I grew up in the Boston suburbs and graduated from Emerson College when it was still in Back Bay. At 22, I left Massachusetts to spread my wings, moving first to Northern Virginia, then exploring the state New Jersey, eventually settling in Monmouth County (exit 117 😉).

Recently, I’ve felt a strong pull to be back in Boston. Several times during my illness (which started in 2009), different scenarios have been posited for moving back to Massachusetts. The bottom line is I haven’t been well enough to move: all of my doctors are here, and I’ve got a great team – that’s a challenge to put together and it wouldn’t be prudent to start over (especially now that I’m making some progress).

Nevertheless, I still feel the pull of the history and opportunities. I dream of going back, not as an invalid, but ready to make a contribution. My job now is to get well so I can make my dreams a reality. 

2nd Annual Lit Crawl!

  Get ready for a night of literary mayhem and merry making. The 2nd Annual Boston Lit Crawl is Thursday, October 26th from 6:30-9:30pm! This evening of fun is free, and it all takes place along Newbury Street and throughout the Literary District.  

 Check out the schedule and sign up for your favorite activities. 

 P.S. Be sure to add Literary Balderdash, a game show presented by GrubStreet and Brookline Booksmith, to your Lit Crawl itinerary!

https://bostonbookfest.org/festival/lit-crawl-boston-2/?

Doctors agree Lyme disease patients at-risk for suicide are under-recognized group – Daniel Cameron MD

Expanded from the original article by Dr Robert Bransfield written earlier this year.

Finally, this epidemic within a pandemic is being recognized. 

The first few years of my illness, my cats, my mom, and my faith (in different orders and combinations), got me through the rough patches. For a time I also belonged to an online Lyme group devoted to patients who were having suicidal thoughts (I’ve never known anyone admit to being homicidal). There were nights I’ve stayed up late talking to someone in crisis and times I had to tune others out to take care of myself.

I’ve lost two Facebook friends to suicide. I can’t imagine what they experienced that tipped them over the edge. It’s time the suffering this disease causes is noticed and taken seriously.
http://danielcameronmd.com/doctors-agree-lyme-disease-patients-risk-suicide-recognized-group/

Yolanda Hadid made her own poop ‘lab’ to treat her Lyme disease | New York Post

“I never kept a tally and I didn’t count it, but I can tell you that it’s a lot,” Yolanda says. “People spend their life savings on finding a cure, and there is no cure.”

My estimation, since going on disability in 2009, is around $95,000. That is out of pocket and doesn’t include loss of income. I maxed out my credit cards, cashed in my 401k, IRAs, and pension, begged for money from friends and family, and rented a room out in my house when I could find someone. 

I would love to try stem cell therapy in Germany (not the clinic Yolanda went to), but I don’t have $30,000, unless I sell the house. And I don’t have the physical or mental resources to sell this, find something else and move. Something I’ve done more than a dozen times since graduating college. 

From a family member: “she says the stem cell therapy didn’t work. it’s hard to tell from her long list what might have been most effective. besides removing the implants.”
My response: “That’s a risk with stem cell, it doesn’t give the same results for everyone. But she did embryonic and Infusio (who now only does fat stems bcuz of US laws); from my research, blood or bone marrow stems work best for Neuro Lyme. That’s why I have my eye on a different German clinic. 

“Also interesting, Dr Horowitz put her on bicillin shots and mepron, no IV antibiotics (since it was his office that put me on the path to my current protocol). And doesn’t seem like she stayed with him very long, but then, I’ve had three LLMDs since 2010 (Lyme literate medical doctor).”

http://nypost.com/2017/09/11/yolanda-hadid-made-her-own-poop-lab-to-treat-her-lyme-disease/

Essay on Lyme and Tick Borne Disease 

A friend sent me this article:

Scientists Have Developed A Shot That Could Offer Complete Protection Against Lyme Disease

https://www.bicycling.com/training/lyme-disease-protection-shot?

Unfortunately, there are two things that make this headline and subsequent article a non-starter for me. 

First, in the past five (or more years), there have been many wonderful medical innovations, “2-3 years out”, that have never been heard from again; second: “The downside, however, is that this shot would not protect from the host of other diseases that ticks carry, including powassan virus, babesiosis, anaplasmosis, Rocky Mountain spotted fever, and ehrlichiosis.” From NIH.gov, “We report here the successful application of MLVA for strain discrimination among a group of 41 globally diverse Borrelia isolates including B. burgdorferi, B. afzelii, and B. garinii.” To expand… One tick may carry many diseases, sometimes for convience called Lyme, but also many other names, I personally like to use “tick borne disease” (TBD).

“Lyme borreliosis is the most common vector-borne disease in the Northern
48 Hemisphere and is caused by spirochete bacteria that belong to the Borrelia burgdorferi sensu
49 lato species complex. These tick-boren pathogens are transmitted among vertebrate hosts by
50 hard ticks of the genus Ixodes. Each Borrelia species can be further subdivided into
51 genetically distinct strains. Multiple-strain infections are common in both the vertebrate host
52 and the tick vector and can result in competitive interactions. To date, few studies on
53 multiple-strain vector-borne pathogens have investigated patterns of co-occurrence and
54 abundance in the arthropod vector. We demonstrate that the abundance of a given strain in the
55 tick vector is negatively affected by the presence of co-infecting strains. In addition, our study
56 suggests that the spirochete abundance in the tick is an important life history trait that can
57 explain why some strains are more common than others in nature.” Source: http://aem.asm.org/content/early/2016/11/07/AEM.02552-16.full.pdf
According to the International Lyme and Associated Diseases Society (ILADS), (of which one of my doctors was past president): “THERE ARE 5 SUBSPECIES OF BORRELIA BURGDORFERI, OVER 100 STRAINS IN THE US, AND 300 STRAINS WORLDWIDE
This diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection.”  http://www.ilads.org/lyme/lyme-quickfacts.php

So, articles like this I simply find frustrating….

And please, *never* follow the CDC guidelines or the website, in my personal experience, they are woefully, almost criminally inaccurate. Look for articles written by people who have actually experienced tick diseases, they tend to have a much better “boots on the ground” view of the subject.