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/?

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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. 

TOUCHED BY LYME: A teenager seeks answers to a lifetime of pain | LymeDisease.org ** editorial/shared

Sitting here feeling the antibiotics flowing in through my port into my bloodstream, the attached article is both inspiring and depressing.

My battle with tick disease began in the mid 1970s when I was a child. My symptoms were not consistent, intermittent and changed over the years. I was sent home from the ER with overwhelming abdominal pain, they said I was stressed by Easter (and at that time I wasn’t religious, Easter meant chocolate bunnies), a few years later I was diagnosed with endometriosis, then later Crohn’s disease, and much later, my appendix was removed, half eaten by endometriosis. Stress, huh?

In spring 2009, on a golf outing for work, I got a fresh tick bite. I was 40, an upperwardly mobile professional in a management position with an international corporation. I had everything to look forward to.

By October 2009, I was disabled with a MRSA sinus infection, debilitating headaches, weakness, and fatigue. I have not been able to work since.

Finally diagnosed with Lyme disease in December 2009, it took a 2014 spinal tap to get me started towards my current treatment program that finally began January 2016. Since then I’ve definitely improved, but I still have my bad days and slightly better days.

I wish this young woman all the best and that she is able to achieve her dreams.

When I read her list of symptoms, I can relate to each one.

Please take the time to read her story. 

https://www.lymedisease.org/touched-lyme-teen-pain/

With chronic illness: Happiness is air conditioning ** essay/photos 

A good friend (who requested anonymity), carried a window unit up from the basement to my cozy little bedroom just before the big heatwave hit New Jersey this week.

I had been putting it off for a few reasons.

  • I wanted fresh night air to sleep in for as long as possible.
  • Once it was in place, there would be very little way for fresh air on cooler nights, as the other window has the catdoor.
  • I hate asking for help.
  • Now that it’s in, I’ll need help getting it out again.
  • Seems a lot of work for a few weeks of discomfort.

On the other hand, the alternative would have been to move back down to the not yet cleared out dining room, and that felt like it would be defeat.

I did spend one night last week in a sleeping bag on the hardwood floor in the front bedroom, that’s when I noticed the bruising on my right hip-must have walked into something. Since I have a large cyst outside of my left hip from when I fell down the stairs in February, sleeping on the floor was not a long term solution.

So here are some pictures of a happy Noelle (and me), and the current alterations to the room.

My happy girl…

And a look around the cozy room…

Yes, the catdoor behind the curtain remains open, crazy Squee prefers staying outside in this crazy heat. I brought her in earlier today, to make sure she had some food and water, then she was back down the trellis to the porch. I didn’t take my camera when I went downstairs.

Here’s her escape route:

Unfortunately, summer heat and humidity do not agree with my body. I will be glad for the cooler temperatures.

Featured Blog…East Coast Approach! ** shared/editorial 

I’m new to blogging (a month or so). Due to chronic illness I don’t always have the energy to say what I want to say when I want to say it. So I have an email folder and send myself blog ideas for future use. I’m up to 88, and so far haven’t gotten back to them, despite posting multiple times most days. I guess I’ll have inspiration waiting when I need it!

I really enjoyed this blog and would like to share…

Source: Featured Blog…East Coast Approach!