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/

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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. 

Please help 8/28/17 youcaring.com update

Being treated for Lyme disease with IV antibiotics and CIDP (peripheral neuropathy) with IVIg. Cuurently in full Epstein-Barr flare, recently diagnosed with Hashimoto’s (hypothyroidism), I also have Crohn’s disease, orthostatic hypotension, Fibromyalgia, cognitive issues, Migraines and tension headaches, and other issues.

In addition to IV medications and prescription medications, my doctors recommend a large number of good quality supplements and an organic whole foods diet. Since starting the Autoimmune Paleo (AIP) diet, my nerve pain has decreased significantly.

Due to eye weakness and poor reflexes, I haven’t driven since the fall of 2015. I have been on disability since 2009, and though there is definitely some improvement, the recent Epstein-Barr flare has set me back a little. From pushing myself I have had three bad falls in 2017, the latest in August.

I’ve been reluctant to ask for monetary help outside of my family, but I feel like I’m on the right track and I don’t want to have to cut corners with my care. I have fallen behind and have several outstanding bills for both medical and living expenses. If you are in a position to help, please make a contribution to my health care.

Updated today with more details… https://www.youcaring.com/msleighm

Or donate directly to www.paypal.com email: msleighm@aol.com

Thank you for taking the time to read this.
Leigh

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I Used to Be a Writer—Then I Got Sick | Literary Hub ** editorial/shared

Though I was not a writer, I mourn who I was. Bad day today. Thank you, mom, for sending me this article, it helped balance me this morning. 

Two excerpts:

I have not yet learned anything except that I don’t want this, but also that I am this—I am illness just as much as woman, wife, friend, daughter, guardian of two mutts. And because, right now, I am illness—because I have not, as other people promise I will, learned to have a malady rather than be one—it is all I can manage to write about. I am a body in every moment, and my body is all I can think about….

Pain makes us absolutely self-centered, not in the malignant way of a narcissist, but in the inevitable way of an infant. Pain refuses to allow us to forget our bodies or to amputate them from our selves. Pain’s shrill cry will rise up, louder and louder, if we try to shut it out. Now, I often marvel that anyone is alive at all. There are so many things that can go wrong.”

Please read the full essay:  http://lithub.com/i-used-to-be-a-writer-then-i-got-sick/

Help Leigh pay her medical bills, Lyme caring

I’m going to attempt to share my YouCaring.com update here…

If everyone who visited this post donated a dollar, I would be able to pay my overdue and upcoming medical bills.

PayPal: msleighm@aol.com

Or

https://www.youcaring.com/manage-fundraiser.aspx?frid=785276#goto-updates

I’m so befuddled by this an drowning, I’m starting to get a migraine.

Thank you.