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/

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Word of the Day

A.Word.A.Day
with Anu Garg

mythomania

PRONUNCIATION: (mith-uh-MAY-nee-uh)

MEANING: noun: An abnormal tendency to exaggerate or lie.

ETYMOLOGY: From Greek mythos (myth) + -mania (excessive enthusiasm or craze).

Earliest documented use: 1909.

USAGE: “I humoured him by listening to his stories about all the grandchildren he probably didn’t have. His mythomania, which both terrified and exasperated me, somehow brought us together.” Marie-Renee Lavoie; Mister Roger and Me; Anansi; 2012.

See more usage examples of mythomania in Vocabulary.com’s dictionary.

Essay, Suddenly Seymour 

I had my IV antibiotics earlier today (administered at a local hospital per insurance requirements), came home and slept for several hours, then woke with “Suddenly Seymour” rattling around my brain. Several hours later it’s stuck in a loop. I watched the movie (Little Shop of Horrors), the day of the eclipse, so a week ago yesterday, and hadn’t consciously thought about the song since then. What strange things our brains are!

Though, it certainly would be nice to have someone (compatible and sane) declare him/herself in a ballad. 

One of these days I’ll start dating again… Perhaps I’ll be able to find my (kaboom) Seymour. 

Hurricane Harvey 2017: Texas, Trump, and SMH

I’ve been sharing a lot of information about Hurricane Harvey on Facebook. My heart or a out to everyone in the path. Watching from the area Hurricane Sandy devastated lives, I have seen what destruction can be caused, to individual lives, property, and entire communities. 

The preident’s response, though not a surprise is still shocking to me. 
Over the last year or so I’ve read with interest how Holland manages their water and plans for storm surge like this. I have wondered what citites, states, or federal agencies have taken any of that knowledge into account when planning or allocating resources. This is a fascinating article from June NYT: 

https://www.nytimes.com/interactive/2017/06/15/world/europe/climate-change-rotterdam.html

The two paragraphs quoted below, from a NYT article today, highlight the incongruity of Trump, his denial of climate change, “This very expensive GLOBAL WARMING bullshit has got to stop. Our planet is freezing, record low temps,and our GW scientists are stuck in ice,” https://twitter.com/realDonaldTrump/status/418542137899491328

and his insisting on cutting the very programs he his now praising. For more on this:
http://www.huffingtonpost.com/entry/pres-trumps-foolish-fema-budget-cuts-emergency_us_59a31222e4b0cb7715bfd6ab

“Wow,” he tweeted on Sunday morning. “Now experts are calling #Harvey a once in 500 year flood! We have an all out effort going, and going well!” An hour earlier, he noted, “Many people are now saying that this is the worst storm/hurricane they have ever seen. Good news is that we have great talent on the ground.”

“Mr. Trump did not wait long to start doling out praise. On Saturday, as relief efforts were just gearing up, the president tweeted to the administrator of the Federal Emergency Management Agency, Brock Long, “You are doing a great job — the world is watching! Be safe.” Quoted from:  Trump to Travel to Texas With Torrential Rain Still in the Forecast https://nyti.ms/2vARM5q

Picture from: https://weather.com/storms/hurricane/news/tropical-storm-hurricane-harvey-rain-flood-forecast-texas-louisiana

SMH.

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.