Check out @JSchling’s Tweet: https://twitter.com/JSchling/status/947156447942598656?s=09
It’s frightening, because it’s true.
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.
“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).”
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:
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:
“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
Why the term “opiod crisis” bothers me so much… heroin crisis and/or illegal prescription usage, or something else more targeted to an abusive population, please. Be precise.
There are many chronic illness sufferers who need heavily regulated medications to fuction. If the government must “intervene”, regulate, label, and restrict, please offer us an alternative such as legal medical marijuana; I don’t want to smoke it, quite the contrary, however I do want to contribute to society, there are plenty of non-smoking options that assist with chronic pain and illness that could be made available in a legal and affordable manner (Colorado and California come to mind). In New Jersey the list of “acceptable” diseases is frustratingly limited, and even if I were a candidate, the dispersal facility is out of my transportation range, and since it’s not covered by insurance, I’m told it’s expensive. Nothing in this current model helps a chronic pain patient who would like another legal option.
I have been with the same doctor since 2010, I think he has a pretty good handle on my medical needs. Yet, because of several medications I take, he and I are both subjects of special scrutiny; in 2016, the paperwork I had to fill out was almost as much as when I bought my house (really). Now, I must go every three months, even though he books three months in advance; so if I’m not feeling well that day or my ride falls through (county bus now says it’s out of my ride service, even though it’s in the county and they used to take me there), if I have no choice but to reschedule, i usually cant get another appointment until three months later. Because I don’t drive, I can’t take same or even next day cancellations. In addition, he doesn’t accept insurance so I have to pay out of pocket for each visit, simply to pee in a cup and document I was there. This is a chronic illness (actually multiple), it’s not going away in three months.
Someone might ask, why not find someone closer who takes my insurance? Because he has been my one constant since 2010 after my initial diagnosis. He found my gallbladder infection and helped me get through the system to get it removed last summer. None of my other doctors caught the problem. He has tested me for other, rare problems because he knows me and can see when something isn’t right. Having said all that, I would like to spend the time and energy I am forced to see him in searching for a new neurologist, as I have been without one since December (she no longer takes insurance, is much more $ and in Manhattan).
Rigid medical guidelines can cause harm.
“Potential limitations and harms of guidelines:
“The most important limitation of guidelines is that the recommendations may be wrong (or at least wrong for individual patients). Apart from human considerations such as inadvertent oversights by busy or weary members of the guideline group, guideline developers may err in determining what is best for patients for three important reasons.
“Firstly, scientific evidence about what to recommend is often lacking, misleading, or misinterpreted. Only a small subset of what is done in medicine has been tested in appropriate, well designed studies. Where studies do exist, the findings may be misleading because of design flaws which contribute to bias or poor generalisability. Guideline development groups often lack the time, resources, and skills to gather and scrutinise every last piece of evidence. Even when the data are certain, recommendations for or against interventions will involve subjective value judgments when the benefits are weighed against the harms. The value judgment made by a guideline development group may be the wrong choice for individual patients.”