Updates on Deanna’s Progress in 2021
Dear friends and family,
As we come to the end of another year, I am pleased to announce that Deanna’s ALS has still not progressed, which is unheard of with this disease. Since the cause of her disease was unknown until 2015, the disease progress was slowed dramatically with the Deanna Protocol, but loss of function continued. Once the causative agent of her disease was identified, we were able to treat it and eliminate the causative agent: a Borrelia infection.
Deanna’s Stem Cell Treatments
You may recall that we were attempting to provide return of Deanna’s function using autologous stem cells. Unfortunately, due to the pandemic, that avenue was temporarily put on hold. Deanna has maintained her improvement in speech, muscle strength, and endurance that she experienced as a result of the stem cells. During the pandemic, Deanna began doing neuro intensive upper body program (a type of occupational therapy) that involved therapy four days a week, five hours a day for three weeks. She has done four intensive programs and has noticed a significant increase in muscle mass, strength, and improvement in dynamic movements. She has also used the concept of neuroplasticity, train other nerves to assume the activity of the lost nerves to take over control of lost muscle function. Despite the fact that she has improved significantly, in a physical sense, none of the improvements she has made have been large enough to increase her level of independence. The plan is to repeat stem cell therapy and immediately follow it with more intensive therapy. The hope is to get even greater improvement that will lead to increased functionality.
It has been my experience, and that of other physicians I am in contact with, that autologous stem cell treatments are very effective in correcting for upper motor neuron and brain deficits, but less effective in correcting for lower motor neuron and spinal cord deficits. There is another stem cell modality in which they extract nerve growth factors from the human nerve cells and then administer them. I believe this method may be more effective in restoring spinal cord nerves. Unfortunately, the company that developed this technology performed a clinical trial on ALS patients in which the infection was not suppressed.
Doctor Miller and I contacted them and expressed concern that, without suppressing the infection, their trial would fail. They were not interested in hearing from us. The trial did in fact fail. This statement that the trial would fail was not an opinion, but an educated hypothesis based on ten years of experiencing this result on many individuals with ALS, no matter what stem cell therapy was utilized. If you don’t kill the bacteria that is killing the cells in the first place, the bacteria will kill the new cells also. The company ignored our advice and proceeded to do a clinical trial on MS patients, which I am (unfortunately) confident will also fail because the bacteria is still present.
The Bacteria Connection
During this more than ten-year medical research odyssey, I have been fortunate to be in contact with several other clinicians, who have come to the same conclusion as I have. We strongly believe that ALS is caused by a bacterial infection, usually the genus Borrelia, of which there are many species and at times co-infections. Concomitantly, based on a large body of evidence, we all believe that many, if not all neurodegenerative diseases, are very likely caused by a bacterial infection, usually various species of Borrelia. To date, every individual we know with a neurodegenerative disease, who has been properly tested (emphasis on the word properly) and has reported back to us has been diagnosed with a Borrelia infection.
The diseases for which we have evidence of links to bacterial infection include ALS, PD, MS, most Alzheimer’s, Chronic Fatigue syndrome/myalgic encephalomyelitis, fibromyalgia, inclusion body myositis, many psychiatric diseases, and other less known diseases. Further, people who have asymptomatic tick-borne diseases and sustain a traumatic brain injury (concussion or sub concussion) have a greater incidence of psychiatric illnesses and ultimately death with chronic traumatic encephalopathy.
The Link to Bacteria Seems Unbelievable
Testing for these illnesses has to be done at a specialty lab because commercial labs do not have the correct antigens. I know this appears unbelievable. As a lifelong allopathic physician, I was in denial that my daughters ALS was caused by a bacterial infection. Plus, at the beginning of this odyssey in 2009, she was tested at a commercial laboratory for a Borrelia infection and her result was negative, by the criteria established by the CDC. Deanna’s positive test result from a specialty laboratory and her body’s dramatic response to antibiotic treatment (in addition to responses of others with ALS) made me believe that the cause of her diseases was a bacterial infection. She eventually tested positive for Borrelia in a specialty laboratory.
Then, I began hearing more from others with ALS, from individuals with other diseases, and from physicians treating these individuals. The same results were true. They were properly (emphasis on the word properly) tested for tick borne diseases and they all tested positive. Then, they were properly treated (again, emphasis on the word properly) and the disease progression stopped. In addition to this evidence, clinical evidence of bacterial infection has been found in individuals with all varieties of neurodegenerative diseases. Beyond Borrelia and coinfections, one also has to consider concomitant factors such as co-morbidities, toxins, viruses, fungi, trauma and vascular abnormalities.
Testing for Bacterial Infections
A provocative antibiotics method has been developed to draw the bacteria out of the soft tissue to Kill it and test for Its remnants (DNA) in the blood. However, specific tests are absolutely necessary to properly diagnose these infections. After the provocative antibiotics method is used, testing for the bacteria must be performed. The only test on the market that we have found to accurately diagnose Borrelia is the panel TBD #4 or TBD #6 from IGeneX. While IGeneX changes the names of the tests often, it is usually the #4 or the #6. I would recommend getting the most comprehensive test you can afford that tests for as many coinfections as possible.
Borrelia isn’t the only culprit. Co-infections cause many negative symptoms and chronic diseases, in their own right, so it’s best not to ignore them. In addition to IGeneX is also a lab in Germany called Armin Labs, for individuals who live in Europe. As many of you have already heard, the proper treatments for these bacterial infections vary. The treatment for Borrelia is the pulsed antibiotic method described on this website and the treatments for coinfections are different, depending on the coinfection.
Resistance in the Medical Community and from Insurance Companies
Neurologists and many neuroscientists refuse to accept the idea that a bacterial infection could be the causative agent of these diseases and conditions as I mentioned above. This idea of infection being the cause is simply too far outside the box and too far from the accepted industry status quo for most people to feel comfortable publicly entertaining it. No professional likes to be the first to stick his/her neck out and express an idea that flies in the face of everything that the industry currently believes. There is much risk involved in being “that person.” On top of this, physicians who have entertained the idea that infection is the cause have been challenged by medical boards and lost their licenses for treating these patients with antibiotics for prolonged periods of time (this is the only type of treatment that works for these conditions). Insurance companies are reluctant to pay for long-term antibiotic treatment have brought these cases against physicians. When you combine insurance companies fighting to make money with physicians being penalized for challenging status quo and treating patients correctly, you create an environment where status quo is regarded more highly than patients’ lives.
I Look at Things Differently Because it’s Personal
As a physician who is retired and as a father of a daughter with ALS, I have a different perspective than insurance companies and other physicians. During this whole journey, I have had nothing to lose by thinking outside the box…nothing but my daughter’s life, which was never an acceptable option for me. That has been enough to motivate me to move forward with any idea for which I can find enough credible evidence…regardless of how different it is from status quo or regardless of what others may think of me. One would think that, after spending billions of dollars on research (for the past 100 years) into these aforementioned diseases, someone with decision-making authority would have questioned the failed approach of their current methods by now. However, it seems that nobody has. It seems that the status quo continues. At this point in my journey, I have found that quite a few clinicians and scientists share the same beliefs as I mentioned above. One thing we all seem to have in common: we have loved ones with one or more of the diseases mentioned above. For us, this isn’t about our reputations. This is personal. Perhaps this is the type of perspective needed to move the medical community forward in this area. Nobody will fight to cure a disease like someone who has a loved one with that disease.
Tick Borne Diseases are More Common Than You Think
Not everyone has to have bitten by a tick to have a tick-borne disease. Tick-borne diseases are present in mosquitos, lice, sand fleas, fleas found on animals, and more. Deanna never actually found a tick on her body. As we know, Borrelia and co-infections can colonize the body for decades before causing symptoms. All it takes is one event (either physical or emotional) to suppress the immune system and the bacteria will multiply and begin causing symptoms. Many people likely are colonized by this bacterium without even knowing it. Each of those people is a ticking time bomb.
Deanna was A-Symptomatic for 15 Years
In retrospect, we know Deanna was colonized for Borrelia for about 15 years before it caused symptoms of ALS. She became very ill after returning home from a trip to Peru, where she went hiking. The illness she contracted had symptoms identical to an early-stage tick-borne illness, but she never actually found a tick. She got better after a few weeks and then, 15 years later, she was diagnosed with ALS when a few immune suppressing events happened in her life (pregnancy, stress of losing a loved-one, and exposure to toxins living in a house with Chinese drywall).
My Other Daughter Was Also Diagnosed with Borrelia and Bartonella Co-infection
In addition to Deanna, my other daughter who has suffered from a long list of chronic illnesses since she was a child, was diagnosed with Borrelia (a different species than Deanna has) and the coinfection bartonella. Despite living a very healthy lifestyle, being a healthy weight, and looking very healthy on the outside, she has always been sick and in pain since she was a child. Physicians diagnosed her with several very severe REM sleep disorders, severe insomnia along with idiopathic hypersomnia, chronic fatigue syndrome, colitis, dysmotility of the digestive system, severe food intolerances to every food group that exists, frequent migraines, rhinitis, sleep apnea, hypothyroidism, kidney disease, and more. Over the years, the pain and discomfort worsened, and the list of problems expanded, while my daughter visited many doctors with no answers other than the diagnoses above and receiving instructions to take pills to alleviate the symptoms. She pushed forward and learned to build a tolerance to the discomfort and pain. She has been on treatments for Borrelia for a month and Bartonella for a week and she has notice significant improvements with a variety of areas mentioned above: all conditions that many physicians have spent 30 years trying to treat, with no success. If she has noticed this much improvement in such a short time beginning, I hypothesize that her condition will only improve as treatment progresses. How many other people are out there like her, suffering in silence while they go to work, go to school, raise children, etc., despite the constant pain, discomfort, and far above normal level of exhaustion? These people push forward with their lives because they have no other option. Building a tolerance and “pushing through” while doctors prescribe ineffective pills to address the symptoms (rather than trying to find the cause) should not be the answer for these people.
More than Just My Daughter
Another family member of mine, who is a teenager, has had a variety of chronic symptoms and for most of his life, was just diagnosed with Borrelia, along with bartonella and babesia coinfections. Many of his symptoms are very common symptoms of these three bacterial infections. A family, who has struggled with several chronic illnesses for most of her life and has had no relief, was diagnosed with Borrelia, bartonella and other co-infections too. Her symptoms match the common symptoms of Borellia and the coinfections she has. This information, in addition to the countless positive Borrelia tests from individuals with neurodegenerative diseases creates a body of evidence that makes me wonder: How many other people are unknowingly colonized by tick-borne bacteria and are suffering, being shuffled from doctor to doctor with no relief?
A Better Future
Imagine if both of my daughters had been tested properly for tick borne diseases as children. Imagine the amount of anguish it would have saved them and our family. This is the future I envision for the medical community and the one I hope to achieve for not just my daughters, but for everyone…if anyone will listen. Why is it so difficult to get properly tested and treated for tick-borne diseases? Insurance companies will not cover the only specialty tests that can actually diagnose these diseases and physicians will not prescribe the proper treatment protocols because insurance companies don’t want to pay for them and will sue doctors who prescribe them! This is already happening. Physicians who treat people with tick borne diseases properly are losing their licenses due to lawsuits brought about by insurance companies.
A Way Forward for Tick Borne Diseases
When I first started in medicine in the 1960s, everyone who was admitted to the hospital, by law, had to have a test for a venereal disease (VDRL). None of these patients had symptoms of syphilis, but they were tested because at some point in their lives, if they were colonized by these microbes, they would develop the devastating symptoms of syphilis and would now spreading this diseases to their partners. Borrelia is in the same phylum as syphilis, caused by treponema pallidum, so asymptomatic people are spreading it to their partners. We need a simple mechanism to screen for Borrelia and co-infections when people are admitted to hospitals and medical clinics. With this, we will be able to eliminate many neurodegenerative diseases, psychiatric illnesses and other conditions that are linked to these bacteria. Right now, in the U.S., all we have is the IGeneX TBD4 or TBD6 test, preceded by the provocative antibiotics method. All other tests for tick-borne diseases have shown to be ineffective.
A Glimmer of Hope Was Lost
There was a proposal for a clinical trial before an internal review board at University of Texas, San Antonio to administer the provocative antibiotics method to all patients with a neurodegenerative disease and test them for bacterial infections at a specialty lab that has the appropriate antigens. This was a very exciting development and was a move in the right direction. My colleagues and I were hopeful that this would change the course of medicine in this area. Unfortunately, the proposal was denied. Here we are: back to the status quo, which is watching patients suffer and die while giving them ineffective pills to help with the symptoms of their diseases.
Researching The Wrong Things
All research (billions of dollars worth each year) focuses on what happens to cells after they are ravaged by disease, rather than focusing on the causative agent of these diseases. All research being done is downstream research on the abnormal proteins, enzymes, mutated genes, etc. that happen as a result of the disease. No valuable research is being done on the cause. I and my colleagues have shared our ideas about bacterial infections with a variety of individuals conducting research in this area and they are not interested in examining bacteria as a causative agent. My belief is that the downstream effects of these bacterial infections that destroy the cells are the abnormal proteins, enzymes and mutated genes, due to lack of energy in the infected cells. It is my strong opinion (backed by evidence) that no matter what causes the cell to lose energy, the downstream effects are the same.
Winning the Fight’s Plan
Winning the Fight would like to fund in vitro research on human nerve cells to establish the cause and the best treatment for neurodegenerative diseases and conditions mentioned above. We are prepared to help fund these trials. When you donate to our organization, this is where your donations will go. Remember, with the exception of one part-time hourly assistant, we are all volunteers and we don’t receive salaries. Our focus is research
What is Stopping the Research?
Unfortunately it is extremely expensive and we do not receive any funds from the well-known and established non-profits focused on ALS, MS, Parkinson’s, Alzheimer’s and other diseases. Most large organizations involved in medical research or fundraising, to date, have only been interested in pursuing the status quo and would likely suffer consequences for going against it, so unfortunately, I am not hopeful that things will change any time soon. The status quo is examining the damage and finding a foreign chemical to put into the body to alleviate symptoms, then launching this new drug into the market to make billions of dollars from that drug. This type of research leads to the most profitable outcomes and the largest return on research dollars invested. Researching bacterial infections that can be cured with low-cost antibiotics (that are already on the market in generic form) is not a profitable endeavor. The incentive behind largescale medical research is profit. This isn’t a dig at the industry as a whole. After all, every industry is focused on profit. Profit is necessary. Profit is a good thing. However, when the projects that benefit patients are at odds with the ones that are profitable, there is a choice to be made: money or patients’ wellbeing. Truthfully, failing to choose profit over patients’ wellbeing can have disastrous financial consequences for any large organization, so you can guess which option they often choose. They have to keep the doors open, keep the lights on, and keep their employees paid, so they have to choose profit. As a physician who is retired, I have the luxury of not being profit-focused, which enables me to see the situation through a very different lens. The best I can do is change things on my end, at a micro grassroots level, and hope these ideas catch on.
Thank you to all who have donated, helped us spread the word, and shown concern for Deanna and others with ALS. You are such an integral part of helping us reach our goals and we are honored to support you in your fight against ALS and other neurodegenerative diseases. Your tax-free donations to WFND will allow us to fund research to prove the problem is upstream, the loss of energy not downstream, the abnormal proteins, enzymes and gene mutations. Please help us end this travesty and save the lives of our loved ones.
Sincere good wishes for a healthy and prosperous 2022,
Vince Tedone MD., FAAOS, FACS, FICS.
Clinical Professor Orthopedics, University of South Florida [retired]
Team Physician, University of South Florida [retired]
Medical Director WFND