NIH Stem Cells For Lyme Neuropathy
Donation protected
My troubles began with a tick bite over 20 years ago, a strongly suspected case of Lyme Disease and under treatment. It became chronic at least by the time this photo was taken, when I needed help to get there. At least then I was still able use my PhD in history to teach at the college level and grade these AP exams in the summer.
At that time I struggled to hold onto doing what I was trained to do: teach on the college level. Now, I seek a last ditch effort of breaking out of this bodily jail via a stem cell treatment from a NIH trial, one that asks for a fee of $3.75K for the service, plus doctors' fees and imaging services to qualify (not counting any other incidentals like travel). Some studies would pay to recruit participants. But not in a for-profit system, perhaps. This is in fact considered partially funded. If the technique restores me, it could help thousands who lost neurological functions under numerous medical circumstances.
Progression of The Disease: The root of this starts with a tick bite in July 1996, an obvious bullseye rash and an 2-3 weeks of amoxicillen for what I believe was a combination of Lyme and Babesia duncani (positive tests came later). Initial treatment perhaps bought me a relatively quiet five years. By 2003, I started having double vision. By the end of 2004, I needed my first cane while trying to negotiate the job market. By about 2010, I developed a circulation issue that makes one foot colder, redder and swollen and that leg has lost muscle and function. And I lost my last full time lectureship. As my mobility grew more challenged, opportunities dwindled. What seemed confined to a central nervous problem has gone to peripheral nerves. In the last five years, I added prismatic lenses, a second cane or use a rollator. I walk a lot slower and can fall without warning.
Medical Background: I have gone through a host of treatments, protocols and diagnoses. The common feature is the obvious functional loss. The diagnoses usually hit upon an autoimmunity trigger to neurological problems related to demylination. I rejected the MS label because I never fit any subcategory. Currently, MDs -- who eschew the Lyme label -- prefer the diagnosis of Chronic Inflammatory Demylinating Polyneuropathy (CIDP). Several Lyme literate doctors and one outside doctor wanted me to do IVIg therapy, specifically Gamunex. It has some side effects such as headaches and palpitations, and I don't see an upside after doing it for well over a year. I'm just not better, perhaps may be worse, and saying "well, I haven't gone blind yet" is far from good. I have reached a crossroads. But why continue with Immumoglobulins? Because the prescribing neurologist doesn't see a better therapy? Is there a better way?
The Plan: This is when I looked at the NIH site for trials and the most promising one goes back to what my last LLMD said to me: "I don't think you'll recover unless you have stem cell treatment."
There is a NIH research project I found here: https://clinicaltrials.gov/ct2/show/NCT02939859?term=adipose+susan+riley&rank=4 . It uses one's own harvested fat cells (in a procedure akin to liposuction) that become manipulated to transform into stem cells that are administered back to the patient. The theory is that the stem cells become so tiny that they can pass through the blood-brain barrier we all have. Some patients have this done twice; I'm not sure why this would be necessary or indicated, especially from my present perspective.
Why do I think it might be my last chance for a meaningful recovery? One doctor had me review the CD images of an MRI performed in 2007 at the University of Pennsylvania. It showed the spinal cord as if someone had taken scissors and clipped out a portion which was totally missing from the image. Beyond greater dysfunction today, my back hurts much more frequently. Sometimes it just wants to stop making any effort, even when I'm sitting down. At least the brain's dysfunctions are considered stable.
Related Details: I've talked to others with meaningful similarities to my story, and it seems there is a variety of approaches to stem cell treatment. I have adjusted my campaign total to reflect the bills I have yet to see but will begin to show up starting in August of 2018.
Update (July 31, 2018): As I stated in an earlier posting of this campaign, I didn't want to wait any longer versus try this adipose-sourced stem cell study when I seemed to approach the cost of the study itself. With the associated travel costs, doctor's fees and MRI fees (one had to qualify for this via the MRI; one is also done post treatment), I keep this up to try to manage the anticipated and whatever possibility emerges for any needed followup. My travel to undertake this procedure takes place next month. I am hopeful that I am doing what I can to maximize the potential for improvement before and after via several practitioners I currently see, such as a physical therapist, kinesiologist, chiropractor, and herbalist who operates a program for Lyme Disease recovery.
Thank you so much for taking the time to read my story and for considering a donation. Please share if you can.
#DitchTheCrutches
Early IV. Not only did I weigh less than 100 lbs., I can't look at the camera straight.
At that time I struggled to hold onto doing what I was trained to do: teach on the college level. Now, I seek a last ditch effort of breaking out of this bodily jail via a stem cell treatment from a NIH trial, one that asks for a fee of $3.75K for the service, plus doctors' fees and imaging services to qualify (not counting any other incidentals like travel). Some studies would pay to recruit participants. But not in a for-profit system, perhaps. This is in fact considered partially funded. If the technique restores me, it could help thousands who lost neurological functions under numerous medical circumstances.
Progression of The Disease: The root of this starts with a tick bite in July 1996, an obvious bullseye rash and an 2-3 weeks of amoxicillen for what I believe was a combination of Lyme and Babesia duncani (positive tests came later). Initial treatment perhaps bought me a relatively quiet five years. By 2003, I started having double vision. By the end of 2004, I needed my first cane while trying to negotiate the job market. By about 2010, I developed a circulation issue that makes one foot colder, redder and swollen and that leg has lost muscle and function. And I lost my last full time lectureship. As my mobility grew more challenged, opportunities dwindled. What seemed confined to a central nervous problem has gone to peripheral nerves. In the last five years, I added prismatic lenses, a second cane or use a rollator. I walk a lot slower and can fall without warning.
Medical Background: I have gone through a host of treatments, protocols and diagnoses. The common feature is the obvious functional loss. The diagnoses usually hit upon an autoimmunity trigger to neurological problems related to demylination. I rejected the MS label because I never fit any subcategory. Currently, MDs -- who eschew the Lyme label -- prefer the diagnosis of Chronic Inflammatory Demylinating Polyneuropathy (CIDP). Several Lyme literate doctors and one outside doctor wanted me to do IVIg therapy, specifically Gamunex. It has some side effects such as headaches and palpitations, and I don't see an upside after doing it for well over a year. I'm just not better, perhaps may be worse, and saying "well, I haven't gone blind yet" is far from good. I have reached a crossroads. But why continue with Immumoglobulins? Because the prescribing neurologist doesn't see a better therapy? Is there a better way?
The Plan: This is when I looked at the NIH site for trials and the most promising one goes back to what my last LLMD said to me: "I don't think you'll recover unless you have stem cell treatment."
There is a NIH research project I found here: https://clinicaltrials.gov/ct2/show/NCT02939859?term=adipose+susan+riley&rank=4 . It uses one's own harvested fat cells (in a procedure akin to liposuction) that become manipulated to transform into stem cells that are administered back to the patient. The theory is that the stem cells become so tiny that they can pass through the blood-brain barrier we all have. Some patients have this done twice; I'm not sure why this would be necessary or indicated, especially from my present perspective.
Why do I think it might be my last chance for a meaningful recovery? One doctor had me review the CD images of an MRI performed in 2007 at the University of Pennsylvania. It showed the spinal cord as if someone had taken scissors and clipped out a portion which was totally missing from the image. Beyond greater dysfunction today, my back hurts much more frequently. Sometimes it just wants to stop making any effort, even when I'm sitting down. At least the brain's dysfunctions are considered stable.
Related Details: I've talked to others with meaningful similarities to my story, and it seems there is a variety of approaches to stem cell treatment. I have adjusted my campaign total to reflect the bills I have yet to see but will begin to show up starting in August of 2018.
Update (July 31, 2018): As I stated in an earlier posting of this campaign, I didn't want to wait any longer versus try this adipose-sourced stem cell study when I seemed to approach the cost of the study itself. With the associated travel costs, doctor's fees and MRI fees (one had to qualify for this via the MRI; one is also done post treatment), I keep this up to try to manage the anticipated and whatever possibility emerges for any needed followup. My travel to undertake this procedure takes place next month. I am hopeful that I am doing what I can to maximize the potential for improvement before and after via several practitioners I currently see, such as a physical therapist, kinesiologist, chiropractor, and herbalist who operates a program for Lyme Disease recovery.
Thank you so much for taking the time to read my story and for considering a donation. Please share if you can.
#DitchTheCrutches
Early IV. Not only did I weigh less than 100 lbs., I can't look at the camera straight.Organizer
Lisa Kazmier
Organizer
Manville, NJ
