Help Fund Lyme Disease Diagnosis & Treatment For Me & Family
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I’m seeking to raise funds to help support me in chasing down the real culprit in causing my chronic, progressive, and disabling neurological conditions. Namely, please help me and my family in funding:
(1) Definitive diagnosis of long-term Lyme disease by Armin Labs, ranked high in terms of most advanced testing (about $750 US)
(2) Treatment of Lyme disease (mean estimate at $1,250 US; antibiotics are anticipated, as well as any newer treatments that can be discovered but are not insurable)
Given my limited means on a disability income, assistance in raising these funds is most appreciated.
Additionally, my daughter just announced she’s engaged to be married, and I want to live long enough to cuddle with grandchildren!
Background
I grew up in one of the most Lyme-ridden places in the world, on Shelter Island, NY. During the summer of 1973, I developed immobilizing pain in my right hip. I could not walk, and remember my younger siblings pulling me around the house in a red wagon.
I was hospitalized at NYU, but doctors could not determine the cause of the problem. They wondered if it might be juvenile rheumatoid arthritis. Slowly, my hip returned to normal.
Lyme was first discovered as a disease in 1975, so it was not even on the radar for those doctors in 1973. Years later, a primary care physician wondered aloud if I had had untreated Lyme.
I watched the recent news on Lyme in Time magazine and was enthralled and horrified to see myself in that story.
The Problem
Many of you know that for six years I have been struggling with the symptoms of peripheral neuropathy: constant neuropathic pain in the “peripheries” of my body: feet, lower legs, hands. My optic nerves may also be damaged, as my field of vision is decreasing. Much information about peripheral neuropathy at NIH.
It is mostly in my feet, but includes strange spiraling electrical sensations up my legs. A neurologist recently told me that these were likely to progress upwards.
In addition, I have suffered from a kind of “brain fog” and difficulty paying attention, for many years.
The pain and discomfort range from intense to bearable, and are treated with a variety of medicines. I have also had infusions of IVIg, as the neuropathy has also been thought to be related to demyelination of the nerves. Pain is barely managed; another neurologist suggested finding as many ways to distract myself as possible. Hence I try to write and make art when I can.
Imagine extremely tight socks, a sensation of heat, cutting, cold, jabbing, stepping on a line of tacks … coupled with a numb feeling (I can cut my toe and not realize it until I see blood on the floor) as well as loss of proprioception (I can’t tell where my feet are, in space: driving, for example, I must wear very thin-soled shoes in order to know how much pressure to apply to the gas or brake).
Managing pain is exhausting, so that in any day I can only accomplish half of what I could do previously. Neuropathic pain is often invisible to others: those who know me have seen me make art, do some writing, walking, traveling … and yet you should know that probably 60% of the time, I am immobile. I have lost balance - sensory ataxia – so that biking, sailing, and running are challenging if not impossible.
Last fall, due to the loss of proprioception, I fell down a flight of stairs and fractured my left arm badly.
I am legally disabled, as the condition is not likely to improve.
In a 2015 lymedisease.org study of more than 6,000 chronic Lyme disease patients, 42% reported having to quit or cut back on work. Less than half of that number reported receiving disability at some point. Losing the ability to provide for oneself or one’s family—and in many cases having to depend on family or friends while sick—can be a real blow to a patient’s sense of self-worth. Moreover, loss of finances can negatively affect relationships. “Active and upbeat people lose the capacity to perform their jobs; athletes lose their ability to play sports for recreation or profession; the emotional turmoil within family life roils to the point of divorce or separation as the Lyme victim—and in many families, more than one person is afflicted—stresses the climate of the household with constant symptoms, financial demands, and psychological changes that boomerang throughout both immediate family and extended relationships,” [iv] (from Denise Lang and Kenneth Leigner, M.D. in Coping With Lyme Disease A Practical Guide
Every possible test to discover the cause of this neuropathy has been done, and most known causes have been ruled out.
I have been tested for Lyme disease in the past, and had a short antibiotic treatment for it about six years ago, after a tick bite. I will always show Lyme antibodies as a result.
However, there is more and more evidence – and more definitive testing – that shows that Lyme can remain hidden, and yet active, in the body even after treatment.
Could Lyme bacteria, or fragments of these spirochetes, be the culprit in damaging my axonal and peripheral nerves? Could Lyme be responsible for the difficulties I have had in concentration?
The NIH has recently funded several new studies to help find answers to these and other questions.
I want to rule out Lyme as a possible cause for my neuropathy, and receive treatment in hopes of reviving my damaged nerves. It’s possible that the nerves will not recover, but if it’s at all possible to stop a cause of my disability, I need to find out, and I need the funds to do so.
Armin Labs performs these tests in Germany, and provides the newest, cutting-edge tests for Lyme in the world, with far better accuracy at detecting if there is active infection versus noting past antibodies.
The tests will include:
Immunoprofile test CD19-/CD3-/CD57+/CD56+/CD45+ cells (immune response due to Borrelia and other chronic co-infections)
Borrelia Tickplex Basic IgG/IgM antibodies or Borrelia IgG/IgM Immunoblot
** The costs for the tests plus shipping will be: $750.00 US.
** The mean cost for treating chronic Lyme in the US was $1,250 in 2022 (NIH statistic). I do not yet know what the costs will be for me, after any insurance coverage by Medicare or my international insurance. Therefore, I’m aiming for the mean number at this point. I am also including the option of investigating other therapies, such as red-light treatment, which could reduce pain.
** Total base amount currently sought: $2,500
** Target goal of $10,000 to cover new treatment and/or travel costs
50% of any money raised above my target goal will be donated to Lyme disease research entities to be determined; additional funds will be reserved for innovative treatments such as red light therapy and others to be determined; and any relevant results of my testing will be shared with relevant researchers.
I am hoping that by supporting me, you will also be supporting research into treatment for Lyme and other tick-borne illnesses, as they are becoming epidemic.
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Please learn more about the tests and about Lyme disease at these links:
(trailer for The Quiet Epidemic)
Economic Burden of Reported Lyme Disease in High-Incidence Areas, United States, 2014–2016
Red Light Treatment: https://lightpathled.com/products/new-torch
Organizer
Charles Huschle
Organizer
Shelter Island Heights, NY