As many of you know, I was injured by a spinal tap in February 2001. I was immediately paralyzed thereafter and was plagued by a series of infections and various health problems such as bladder and kidney infections, mastitis, sore throats, and head aches, in addition to severe spinal cord/back pain, including sacral and coccygeal pain. I spent several years seeking medical help and trying to heal from the paralysis and acute infections that would afflict me, but my health only continued to worsen. Then, in November 2006, I was bitten by a spider in a local grocery store which gave me Lyme disease, acting as the straw that broke the camel’s back. Although I sought help from various medical professionals and hospitals, no one knew how to help me and I was even told to go home and prepare to die. I refused this advice and instead went home and on a clean sheet of paper wrote down the many activities and things that I wanted to do and have in my life. I was no longer able to sleep from pain and I didn’t know what I was going to do, but I prayed every day for help and the strength to hang on. Although I continued trying to find help from various practitioners, nobody had any answers. Then a friend of mine found the research of a Medical Doctor who has several specialties (including being a surgeon), in addition to having a Ph.D. I made arrangements to see him in Seattle, Washington and although he worked with me for two weeks, he said that the first step would be that I go to San Juan, Puerto Rico to undergo Electro-Neuro Medullar Therapy to help heal my back enough so that we could then begin to deal with some of the infections. I was paralyzed when I flew down to Puerto Rico and I was able to walk, somewhat, when I left two weeks later after having been paralyzed for nearly eight years.
Since then, we have been treating several infections in my body; it is like peeling away the layers of an onion. We started with the more superficial infections, and then later, we started attacking the core infections, the original infections that caused me to become seriously ill from the beginning. I even developed meningitis in October 2011 from which it took many months to heal. What’s more, because these infections directly affect the injury to my spinal cord, my ability to walk vacillates enormously. Furthermore, a pathology report has confirmed that I have osteomyelitis at different points in my body which indicates deep levels of staph infection. It was in December 2012 that my spinal cord was finally ready to be dealt with; we began dealing with the infections at ground zero, specifically several strains of staph. The spinal cord infection(s) became so acute so rapidly, that I almost died. If my doctor had not ordered a peptide for other reasons, I would not be here today. It has been that peptide that has pulled me out of near death situations several times already, but it is not enough to kill off the several strains of staph that I have in me, including MRSA (methicillin-resistant Staphylococcus aureus). Two times staph has drained out of my coccyx (out of the caudal epidural space) and created a massive staph infection along my spinal cord and spinal vertebrae, all the way up from my coccyx to my lumbar vertebrae. The first time it happened, I was unable to sit for three months. The second time, although slightly less severe, followed the same scenario. Then in 2015, staph drained out of my spinal cord and entered my abdominal cavity, mixed with rust from rusty metal surgical clips from a surgery that I underwent during high school (the rusted surgical clips were confirmed by pathology), and created a massive tumor on my bladder which caused so much inflammation that I began ripping open, causing a significant sized hernia. This staph/rust situation caused me to develop a severe allergy to metals (which I still have today) and I had to undergo two separate operations. The first was to remove the four ‘rusty’ surgical clips and to determine exactly what that growth in my abdomen was since it grew so rapidly and it was discovered to be a tumor; then they also found the hernia. Before doing anything with the tumor, the doctors needed to make sure that it was not cancerous, which it was not, but they had to close me up and perform a series of tests. Then, a couple months later, surgeons removed the tumor and fixed the hernia. However, because the tumor was on my bladder, it took two surgeons to figure out how to remove it. They had to lasso my bladder and cut off its tip in order to remove all of the tumor. Additionally, the original surgeon had to repair the hernia pediatric style because my body had become so allergic to all foreign matter, specifically metals, that she needed to use dissolvable stitches instead of the typical mesh to close the hernia. Although the hernia was fixed, the infection that was released by removing the tumor and cutting away biofilm went immediately to the hernia repair site and I have been dealing with severe staph infection in that area for nearly two years now. Once, infection from the hernia site spread out into my body and I developed septicemia and went into full renal failure which took a couple of months from which to heal.
Another severe infection that I dealt with, diagnosed by a radiologist using a CT scan, was Calcific Tendonitis of the Longus Coli muscle in the summer of 2014. This infection causes the muscles, specifically the longus coli muscle of the neck, to calcify and I was unable to swallow. I had to sit motionlessly at a 90-degree angle, I could barely speak, I had trouble breathing, it was excruciatingly painful, and if I did try to swallow or move, my blood pressure would drop suddenly and I would pass out. Furthermore, the condition caused me to become temporarily paralyzed once again. My specialist was in Europe at the time, as he travels back and forth because he is from Germany, and the doctors at the hospital, including the ENTs, could only help me by giving me massive doses of steroids and pain killers. In the end, I remained in such a state until I could see my doctor and then he treated and fixed the problem by injecting medication into my stellate ganglion and other places in my neck, head, and back. It took several months, but I recovered from the horrible ordeal. Nevertheless, I had another attack in October 2014, but because I was with my doctor at the time, we were able to get it completely under control within 10 days. To demonstrate how terrible and rare the condition is, the hospital ENTs who treated me are in the process of publishing an article about the entire ordeal. Also, to communicate how dangerous this condition is, a world-renown radiologist from Italy said that he is extremely surprised that I was able to breathe at all during the ordeal and that I should always be prepared to get to my doctor (or the hospital immediately) if it happens again.
Unfortunately, these types of events have been common occurrences for me during the last several years. What’s more, although I have a variety of different infections, at the core of my issues is the original staph infection(s), including MRSA, which was introduced into my spinal cord at the time of the injury to my spinal cord in February 2001. The staph, growing ever stronger, is constantly finding new ways to attack my body and recently it has been through excessively high fevers. For the last four months, I have had daily fevers between 100 and 101 degrees; however, the real problem is that I have had about three weeks of fevers, spread out over the four months, where my temperature goes up to over 107 degrees, and even over 108 degrees. The highest it has been measured is 108.4 degrees. Although I was brought up being told that a person cannot survive a fever of 108 degrees, which I have proven is not true, there is no question that my body cannot handle such fevers much longer. Although I have walked from my bed to the bathroom and back again using my walker with a 107.6-degree fever, I then passed out and remember nearly nothing for twelve hours. Just two weeks ago, I had another very high fever which caused me to lose consciousness, fall down and hit my head, and now I am nursing a concussion. My body is completely exhausted, my eyesight has become much weaker, I have constant head, neck, and back pain, and my body is weakening. I see in 3D much of the time and frequently this is followed by approximately 5 seconds of pure darkness, as if I were blind. Staph is a very powerful infection and it is slowly winning the battle with me, no matter how hard I fight. So, my doctor has searched for what he and other researchers believe is the best treatment for that/the dangerous infections with which I am dealing.
My specialist has found a treatment protocol which involves three separate antibiotics, two IV and one oral that is designed to kill several strains of staph and strep. The two IV antibiotics are Cubicin (Daptomycin) and Ceftin (Cefuroxime), and the oral antibiotic is Doxycycline. The greatest difficulty with this protocol is that I must undergo the treatment for at least 12 weeks and the Cubicin is extremely expensive. The cheapest we have found it is $535.99 per vial. Over a twelve-week period, 90 days, that comes to $48,239.10. Next, the Ceftin is $282.04 for 90 days, or twelve weeks. And finally, the Doxycycline (which we must have compounded as the original contains dairy to which I am extremely allergic) for twelve weeks, or 90 days, is $256.89.
This GoFundMe page is being set up to specifically raise the funds that I need to pay for the antibiotics necessary for me to follow this exact treatment protocol, specifically the Cubicin which has a price tag of $48,239.10 for the minimum of twelve weeks that I must be on the program. This doesn’t even include the other two antibiotics of $282.04 and $256.89, in addition to the IV equipment that will be needed to administer the medication. I ask you to help me, help me to save my life, help me to become the person I was 17 years ago.
Thank you! Thank you for any and all the help that you can give me. Thank you for caring; thank you for helping to save my life!!
Sincerely and God bless,
- Tom Spencer
- Zach Pawlowski
- Kassie and Ian Johnson
- Janet Seifert
- Stan Kirkman
Organizer and beneficiary
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