Understanding my work on ALS
At the beginning of this page is a summary of my work and at the end is a list of primary and secondary research that supports my conclusions
For those of you who have been following my daughter Deanna’s story over the years, you undoubtedly understand that my work on ALS is personal. At the start, my sole focus was on helping my daughter and those with ALS. Now, it has also expanded to helping those with other neurological conditions. While I have donated a sizable amount of money to research, I do not profit or accept payment or financial gain for my work. As any parent would know, when the life of your daughter is on the line, there is no explaining the dedication and level of focus that overcomes you when you work toward seeking the best possible outcome. I have spent years working to improve the lives of those with ALS and years watching family members and friends impacted by other neurological conditions. This has fueled my passion to continue to learn more. This is not just about my daughter, Deanna. This is about every individual with an incurable neurological condition.
We can win this fight, but we can only win it together.
– Dr. Vincent Tedone
Understanding my Work on ALS
To understand my work on ALS and my thought processes, one must consider the mechanism behind the disease and the cell death which occurs. Below is a summary of the processes on which my current work is built.
LACK of cell energy
When cells lack energy, they degenerate and die. In their wake, they deposit intra cellular debris. When the debris becomes extracellular, it is isolated by the deposition of amyloid with the purpose of isolating a pathogen and terminating the inflammatory process.
What can cause a nerve cell to lose energy?
1. Infection: pathogens bacteria, fungi, parasites, viruses. Here, we will deal primarily with the Borrelia bacteria: an issue I will address below.
2. Head Trauma: Concussions and even trauma without concussions, yielding CTE [chronic traumatic encephalopathy]
3. Toxins: Heavy metals, fossil fuels, fertilizers, pesticides, etc.
4. Vascular Abnormalities: CVA, such as stroke.
5. A combination of the above
Consequences of the Cells Lacking Energy
The consequences of cells lacking energy, aside from producing gene mutations and abnormal proteins, is the increased permeability of the cell membrane. The ratio of intracellular glutamate (the primary excitatory neurotransmitter) in relation to extracellular glutamate should be 10,000:1 (search for the research of Vivian Teichberg MD, Weizmann Institute). Increased extra cellular glutamate causes the death of contiguous cells, creating a cascade of cell death, which increases exponentially, and spreads throughout the body. Since extracellular glutamate cannot be metabolized, its catabolic products [which are alpha ketoglutaric acid (AKG) and gamma amino butyric acid (GABA)] are absent in the cell.
Deanna Protocol and Cellular Energy
In Deanna Protocol (DP) that I have formulated, two of the most important ingredients are AKG and GABA. We add arginine to AKG too because arginine is a bipolar base and neutralizes the bipolar acid AKG, making it easier on the stomach. Arginine also lowers blood sugar and causes vasodilation, by producing Nitric Oxide and enhances energy production by mitochondria.
Neuroscientists believe the increased excitation is due to an excess of the primary excitatory neurotransmitter, glutamate. However, based on my work, I believe that it is due to a lack of the primary inhibitory neurotransmitter GABA. When glutamate is outside the cell, it cannot be metabolized, hence, its catabolites, AKG + GABA, are absent.
Polarity of AKG and Entering Cells
AKG has a polarity that will not allow it to enter normal cells. However, when the cell is in the process of degenerating, its membrane polarity changes and AKG can enter the cell. [Communication with Dr. Richard Veech, MD PhD, from National Institute of Health]. This concept is extremely important because the AKG is only absorbed into the cells where it is needed (those with in the process of degeneration). This boosts energy production in these cells and keeps them alive. The concept of keeping cells alive is important because, once the cells are dead and function is lost, it is difficult to retrieve the lost function. Below, I will explain the findings related to ALS as a disorder of the microtubules. (See bibliography for citations.)
ALS and Misaligned Microtubules
As we know, in ALS, microtubules that run in the axons that connect nerve cells via synapses and muscles, via the neuro muscular junction [NMJ], are misaligned. The result is diminished or abnormal signaling between cells.
Clinically, misaligned microtubules cause loss of cognition, brain fog and abnormal muscle function demonstrated by cramps, clonus, twitching and fasciculations. The Deanna Protocol improves the anatomy of the microtubules and improves cell signaling, as shown in one of our key studies.
Abnormal Nerve Cell signaling in other Diseases
The specific disease entities below are delineated by the clinical presentation caused by abnormal nerve cell signaling.
• Neurodegenerative diseases – Google Dr. Alfred Miller MD, Lyme disease part 1 to 4 you tube video.
• Psychiatric illnesses
• Traumatic brain injury and head trauma [traumatic brain injury]
• Vascular abnormalities [E.g. Stroke]
• Infection – Phylum spirochete, genus Borrelia and many others. I will address this below, when I finish my explanation of misaligned microtubules.
The basis for the above statement is the research that has been done at the University of Central Florida (UCF) on human ALS nerve cells in vitro. These cells revealed misaligned microtubules with varicosities on the microtubules that connect cells and, hence, abnormal cell signaling. The addition of the Deanna Protocol to these cells corrected the deformities in the microtubules and improved cell signaling.
I will quote from the UCF paper published in the Journal, Advanced Therapeutics.
“Despite the heterogenicity of ALS pathological mechanism and NMJ phenotype, different ALS mutants all displayed certain improvements in NMJ function after treatment with the Deanna Protocol. Furthermore, treatment with the Deanna Protocol is found to correct the NMJ deficits in all the ALS mutant lines treated.”
The above effect corresponds with the clinical results I have seen in those taking the Deanna Protocol in cases when misaligned microtubules are present in the cells. Those taking the protocol typically report the following results: improved cognition (less brain fog), improved muscle function, and suppression of abnormal muscle symptoms. The next concept in my findings that is important to realize is the concept that Borrelia bacterial infections not only relate to ALS, but also other diseases. Click here for more information on Borrelia and its connection to ALS and the Deanna Protocol. (See bibliography for citations.)
Borrelia
Where does Borrelia fit in with the Deanna Protocol and my work thus far?
Borrelia is most frequently associated with Lyme disease but less known is that it is also the frequent etiological agent, along with co-infections in neurodegenerative diseases, psychiatric illnesses and CTE.
Borrelia and ALS
We have found that Deanna and every individual who has ALS, with whom we have been in contact and who has been tested properly for Borrelia infections has tested positive for one species of Borrelia or another. In Deanna’s case and in the case of others, once the Borrelia infection is properly treated with the proper antibiotic protocol (emphasis on the word proper), the disease progression stopped.
Borrelia and Chronic Traumatic Encephalopathy (CTE)
ALS is not the only disease associated with Borrelia. Chronic traumatic encephalopathy occurs in some people following traumatic brain injuries and not others. Many of those with CTE have been found to be colonized with Borrelia.
I ask the question: why don’t all who sustain concussions develop CTE? I opine that those that develop CTE had been colonized with Borrelia, but were asymptomatic. (It takes an overgrowth of bacteria in the body in order to develop serious symptoms of any disease associated with Borrelia. Therefore, one can be colonized without displaying symptoms if the immune system is doing its job and impeding the bacteria.) I opine that, for those colonized by Borrelia, when TBI occurs, the Borrelia exit the vascular system and enter the brain, killing nerve cells and ultimately causing CTE.
Our most difficult task is detecting the presence of Borrelia and at times co-infections.
What I explain to individuals with ALS (and what most physicians already know) is that Borrelia is a very difficult bacteria to diagnose because it burrows into the soft tissue and “hides.” While, sometimes, it can be present in blood tests, more often than not, blood tests yield false negatives. I always explain to individuals with ALS that it is extremely important that those being tested for Borrelia are tested correctly and that the quality and accuracy of tests are regarded above cost. The most effective way I have found to test for Borrelia is the following: To use the provocative antibiotics method to draw out bacteria and make it easier to detect and then, to use the TBD Panel by IGeneX. The names of the tests by IGeneX change frequently, but the panel that is best is that which tests for Borrelia and coinfections, such as bartonella, babesia, and more. (See bibliography for citations)
THE PROVOCATIVE ANTIBIOTICS TEST
Proper testing is critical.
1) Borrelia infection may involve different species of Borrelia.
Borrelia Burgdorferi (Lyme) is prevalent in the Northeast and upper Midwest.
Relapsing Fever Borrelia is prevalent in Texas.
Testing for Lyme Disease in Texas results in a negative test and therefore an erroneous conclusion ruling out Neuroborreliosis, but testing for Relapsing Fever Borrelia will be positive and confirms the diagnosis of Neuroborreliosis.
I prefer to use a lab dedicated to Tick Borne Diseases whose testing includes many different species of Borrelia.
2) The tests measure the patient’s blood for antibodies against the invading spirochete.
3) The tick bite may go unnoticed in 50% of those infected.
4) Approximately 3 months after the inoculation (tick bite or sexual transmission) the spirochete becomes a cyst which is sequestered deep in tissue and impenetrable to antibiotics. The immune system is not exposed to these sequestered spirochetes and therefore, no antibodies are produced. The testing for antibodies will be negative or muted.
5) Pre-test provocative antibiotics will prevent false negative results.
These antibiotics must include a “cyst buster” to allow the antibiotics to penetrate to kill the spirochete.
Typical antibiotics include Flagyl or Tindamax to open the cyst and Azithromycin or Ceftin to kill the spirochete.
These are administered daily for 28 days pre-testing.
6) The provocative antibiotics expose the spirochete to the immune system resulting in robust antibody production which is then measured on the testing.
I have encountered numerous patients whose initial tests for Borrelia are negative but after the provocative antibiotics the same tests performed in the same lab become very positive.
“Provocative Antibiotics” to expose the Lyme spirochete to the immune system in order to get a robust antibody production. The antibodies will be measured on the definitive tests.
The specific antibiotics:
1) Azithromycin 500mg or Ceftin 1000mg
2) Flagyl 500mg or Tindamax 500mg
Take both daily for 28 days before any testing.
Regarding the testing:
Two labs -1) LabCorp – they have collecting stations in every city.
Order “CD 57”.
2) Igenex Lab – They have a website – the physician contacts them and they will send a collecting kit and a FedEx mailer.
Order Igenex panel #TBD 41B (This is very comprehensive and includes Borrelia and co-infection).
Please send me copies of all of the results from both labs because often subtle abnormalities are ignored.
Alfred Miller,M.D.,F.A.C.R.
Retired
Mayo Clinic trained Physician
Private practice Internal Med./Rheumatology for 40 years
Retired Full Professor, Department of Medicine, Clinical Faculty, Univ. Of Texas Medical School
Then order an IGeneX test TBD panel # 4 or 6.
If you have any questions, contact IGenex directly at 800.832.3200 (US) or +1 650.424.1191 (international). (Email customerservice@igenex.com). Europeans can also use ArminLabs https://arminlabs.com/en, in Augsburg, Germany
Treatment for Borrelia Infections
We no longer advise the use of Disulfiram, as we did previously, due to the frequent psychotic episodes reported.
A patient who has a neurodegenerative or Borrelia related disease that is not progressing rapidly (such as AD, PD, MS, fibromyalgia, ME/CFS, CTE, CVA or psychiatric illnesses) may be able to be treated with the pulsed oral antibiotic treatment method developed by Dr. Miller, once the pathogens are identified.. There are three methods of treatment listed below. First, I list the two oral methods (one allows the patient to drink alcohol and one forbids it, due to the danger of drinking alcohol with Flagyl). The third protocol is for rapidly progressing diseases like ALS.
It is extremely important to note that some patients may experience severe Herxheimer reactions due to the die off of the bacteria. If this happens, they may need to start with very low doses of antibiotics and gradually work their way up to the dose listed below. Deanna tolerated the doses (in the IV treatment below) quite well and her Herxheimer reaction was not severe. Dr. Tedone’s daughter Chiara (who also has Borrelia and co-infections) is on an oral protocol below. She had severe Herxheimer reactions and had to start with very small doses. She accomplished this by cutting pills and taking fractions of the pills to start, then working her way up to higher doses. She also needed IV glutathione (2 grams IV push of pure glutathione twice a week, each push lasts 20 min) to reduce the Herxing. The glutathione push was extremely effective. Traditional IVs with an IV bag containing glutathione and fluids did not work for her. When pushing the glutathione, she noticed that pushing too quickly made her feel extremely ill (which she was told is common when the push is done too quickly). She was told that pushing longer than 20 minutes would cause some of the glutathione to break down and she would not get the full benefit of the entire 2 grams. Twenty minutes seems to be the sweet spot for Chiara and many others who use glutathione IV push. Chiara has now started taking the IV push only once a week and oral liposomal glutathione for the rest of the week.
Option 1: The three-pronged oral treatment for diseases not progressing rapidly
1. The Oral Pulsed Protocol – This protocol was developed by Dr. Alfred Miller, MD. To this protocol, I have added butyrate (a pre-biotic to go along with the probiotic), the Cowden Support Program (explained below, by Dr. Lee Cowden, MD, and the Deanna Protocol).
a. Every Monday, Tuesday, Wednesday, take the following: • Ceftin 1000 mg BID (500 mg tablets), and Probenecid 500 mg BID. This protocol is specific for the bacteria of the genus Borrelia and the species and strains, known to date, to be found in this genus. Co-infections may also be present and require specific treatment.
b. Metronidazole (Flagyl – which opens the protective cysts around the Borrelia bacteria that make it immune to antibiotics.) If Flagyl is not tolerated, one may substitute Tindamax or Tinidazole 500 mg BID. Do not drink alcohol while taking a metronidazole.
c. Every Thursday and Saturday, take Diflucan 100 mg in AM only. This reduces yeast and opens cysts.
d. NT Factor – Take 2 tabs T.I.D every day
e. R-Lipoic acid – I Q AM at least 30 minutes before eating
f. Probiotic Q.D. at noon [Culturelle] and prebiotic Butyrate, calcium, and magnesium supplement by BodyBio.
2. Cowden Support Program – An herbal treatment to eliminate any unknown pathogens www.nutramedix.com
3. Deanna Protocol – The Deanna Protocol should be used in conjunction with whatever treatment modality is used, largely because our studies along with anecdotal feedback from those with ALS show that it keeps cells alive and makes patients more comfortable. In keeping cells alive, it enables them to be rehabilitated later, when the infection is eliminated or suppressed. As I mentioned, once cells are dead and function is lost, we have not found any reliable means (yet) to regain cell life and function. To find the Deanna Protocol, visit www.deannaprotocol.com
We have not yet established the serving size for the Deanna Protocol in diseases other than ALS. I would start low with a scoop at each meal and monitor symptoms and increase or decrease accordingly
Option 2: An alternative oral treatment protocol for those whose disease is not progressing rapidly and who do not wish to abstain from alcohol
Follow the protocol below – 3 days on (Monday, Tuesday, Wednesday) and 4 days off
1. Ceftin-500 mg-2 Q 12h [1000 mg each dose] Monday, Tuesday, and Wednesday. This protocol is specific for the genus Borrelia bacteria and the species and strains, known to date, to be found in this genus. Co-infections may also be present and require specific treatment.
2. Probencid-500 mg Q12h Monday, Tuesday, and Wednesday.
3. Oregano oil- [nature’s way] 2 capsules q 12h opens cysts of the Borrelia bacteria that makes them immune to antibiotics – Monday, Tuesday, and Wednesday. This is over the counter
4. Diflucan -1Q 24h – Subdues yeast and opens cysts – Monday, Tuesday, and Wednesday.
5. Artemisinin- (Doctor’s Best brand) 100mg Q 12h – Monday, Tuesday, and Wednesday.
6. Probiotics every day – Culturelle ultimate strength is a good brand – Q.D.
7. BodyBio brand Butyrate Calcium & Magnesium Q, D.
8. Ivermectin on first 4 Mondays only. O.2mg/kg
9. Add the Cowden Support Program and Deanna Protocol to the treatment above.
We have not yet established the serving size for the DP in diseases other than ALS. So, I would start low with a scoop at each meal, monitor symptoms, increase or decrease accordingly.
Option 3: The three-pronged pulsed antibiotic IV treatment – for rapidly progressing disease
1. IV pulsed antibiotics
2. Cowden Support Program [CSP] – This is an herbal treatment program that covers many pathogens that may be present, but unknown. https://www.nutramedix.com/
3. The Deanna protocol The DP keeps cells alive so that, once the infection is suppressed, we may be able to retrieve them and preserve function. www.deannaprotocol.com
Item 1: IV Pulsed Antibiotic Method Explained
For three days, she takes IV Rocephin at 2 gms every 12 hours and Tinidazole (alternative to Flagyl) to open the cysts and allow the antibiotics to kill Borrelia.
The dose of Tinidazole is 500 mg orally twice a day, one to two hours before the Rocephin. This protocol is specific for the genus Borrelia bacteria and the species and strains, known to date, to be found in this genus. Co-infections may also be present and require specific treatment.
For patients on Rocephin, it is recommended to also prescribe Actigall – 300 mg orally 2 X a day to avoid the formation of gall bladder stones that can occur with Rocephin.
Diflucan – 100 mg orally every Monday and Thursday to avoid fungal infections that can occur when taking high doses of Rocephin or other antibiotics.
For seven days, to replenish beneficial bacteria, use Culturelle ultimate strength. BodyBio Butyrate Calcium & Magnesium is a prebiotic that feeds the beneficial bacteria to keep them alive and allow them to flourish, so this is also recommended. Also use NT Factor, which repairs cell membranes from cells that have been damaged due to the Borrelia.
SUMMARY: For 3 days, kill the bad and some good bacteria, but for 7 days restore the good bacteria.
NOTE: The specific IV treatment protocol should be determined by the specific type of bacteria present.
Item 2: Cowden support program [CSP]
This is an herbal treatment program that covers many pathogens that may be present but are unknown. https://www.nutramedix.com/
Item 3. The Deanna Protocol
The DP keeps cells alive, so that once the infection is suppressed, we may be able to retrieve them and preserve function. www.deannaprotocol.com
Please click the link below to read about the Herxheimer reaction: a common occurrence with the pulsed antibiotic method. (See bibliography for citations.)
Option 4: ANTIBIOTIC TREATMENTS TO AVOID ANTIBIOTIC RESISTANCE
Phase #1 (for 4 weeks)
a. Oregano Oil – 2 capsules, twice daily (three days on, four days off)
b. Artemisinin – 100mg, twice daily (three days on, four days off)
c. Monolaurin – 800mg, twice daily (three days on, four days off)
d. Diflucan – 100mg, every morning (three days on, four days off)
e. Ceftin – 1000mg, twice daily (three days on, four days off)
f. Probenecid – 500mg, twice daily (three days on, four days off)
g. Ivermectin – 3mg, 6 tablets in the morning on Mondays only (only for 4 weeks)
* No artificial sweeteners are allowed during this phase.
Phase #2 (for 4 weeks)
a. Oregano Oil – 2 capsules, twice daily (three days on, four days off)
b. Artemisinin – 100mg, twice daily (three days on, four days off)
c. Monolaurin – 800mg, twice daily (three days on, four days off)
d. Diflucan – 100mg, every morning (three days on, four days off)
e. Amoxicillin – 1000mg, every eight hours (three days on, four days off)
f. Probenecid – 500mg, every eight hours (three days on, four days off)
g. Ivermectin – 3mg, 6 tablets in the morning on Mondays only (only for 4 weeks)
* No artificial sweeteners are allowed during this phase.
Phase #3 (for 4 weeks)
a. Oregano Oil – 2 capsules, twice daily (three days on, four days off)
b. Artemisinin – 100mg, twice daily (three days on, four days off)
c. Monolaurin – 800mg, twice daily (three days on, four days off)
d. Diflucan – 100mg, every morning (three days on, four days off)
e. Doxycycline – 100mg, two every twelve hours (three days on, four days off)
f. Probenecid – 500mg, every eight hours (three days on, four days off)
g. Ivermectin – 3mg, 6 tablets in the morning on Mondays only (only for 4 weeks)
* No artificial sweeteners are allowed during this phase.
Repeat all phases as recommended by your physician.
* If allergic to penicillin, an alternative to Amoxicillin may be substituted.
* While taking Doxycycline, avoid excessive sunlight.
* While taking Doxycycline, do not recline for one hour after each dose.
* While taking Doxycycline, take each dose with two glasses of water to ensure proper passage through the esophagus.
* While taking Doxycycline, avoid dairy products and antacids.
* Monitor all labs, including CD57, as per treating physician.
2. Cowden Support Program [CSP]
This is an herbal treatment program that covers many pathogens that may be present but are unknown. Deanna did this program while being treated with the pulsed antibiotic method and it made a big difference for her. This support program also addresses and gets rid of Herxheimer reactions. When the Borrelia and other bacteria are killed, the dead bacteria left in your system can make you feel sick and cause symptoms such as stomach upset, vomiting, hot flashes, fatigue, headache, sweating, limb pain, joint pain, and a variety of other symptoms. Most people have more mild symptoms. For some with more severe symptoms, it can feel like a mild to moderate flu. The good news is that this is all temporary.
For most people who experience this, it only lasts a few hours at a time. In more severe cases, it can last as long as a flu would last, but most cases are not severe. These symptoms will go away with the Cowden Support Program Parts of the Cowden support program are designed to specifically address Herxheimer reactions and to make you feel better when you are feeling sick. Like all new protocols, please make your doctors aware that this antibiotic treatment specified in item 2 (above) can cause a bacteria kill-off that can cause a Herxheimer reaction. The drops specifically designated for reducing the Herxheimer reaction are called Burbur Pinella. Deanna took this and it worked. She took 10 drops of Burbur Pinella in 1/4 cup of water every 10 minutes for up to 2 hours. Click here to access the website that sells the Cowden Support Program.
NOTE: Before trying anything new, always get the approval of your treating physician. Inform your treating physician about the potential that you may experience a Herxheimer reaction if you do this treatment.
3. The Deanna Protocol (“DP”)
The Deanna Protocol should be used in conjunction with whatever treatment modality is used because it keeps cells alive so, they may be revived later when the infection is gone. (Cells in the body renew naturally. However, once they die, they cannot renew. This is why it’s important to keep the damaged cells that would otherwise die alive, so they can be repaired and renew when the infection is gone.)
Herxheimer Reaction and Deanna’s Borrelia Infection
Borrelia, when killed by antibiotics, releases toxic substances. These substances affect the cells they are in contact with and cause Herxheimer reactions. The symptoms can be any that the patient feels are abnormal. CD 57 test results indicate the number of natural killer cells in the body that can kill off the Borrelia bacteria. When CD 57 levels are normal, this is an indication that an infection is under control. We use Lab Corp to test the CD-57 level. Normal range is 60 -360. CD -57 stands for cluster designation 57 on NK cells, which are specific for Borrelia.
Since beginning the pulsed method, Deanna has had a Herxheimer reaction approximately every 3 to 4 weeks. The Borrelia bacterium reproduces every 21 days. When it reproduces it enters the host cell and co-opts the TCA cycle, extracting energy from the cell and causing the production of gene mutations and abnormal proteins, which ultimately kills the cell. It is during its reproductive cycle that the Borrelia becomes susceptible to the antibiotics.
When the Borrelia die, they release a toxin that causes the Herxheimer reaction. In the last three months of her treatment Deanna did not have a Herxheimer reaction. Further, her CD 57 has remained in the normal range for approximately the past year. Due to these factors, I now believe the Borrelia in Deanna’s body is under control.
Borrelia, when not in its reproductive cycle spirochete form, forms a cyst which makes it resistant to antibiotics. Therefore, we add a metronidazole [Flagyl, Tinidazole, Tindamax] to the treatment protocol to open the cysts and make Borrelia susceptible to the antibiotics.
Once the Borrelia infection is under control, the progress of the disease should halt. The Deanna Protocol helps to slow the progression of the nerve cell damage that is still occurring while the Borrelia infection is being treated and helps (after the Borrelia infection is gone) to enhance the function of the cells that have already been damaged by the infection. Next, I will explain the loss of nerve cell function and my findings with Deanna over the course of my attempt to regain lost function. (See bibliography for citations.)
Lost Function
I believe Deanna’s Borrelia infection is finally under control. The Borrelia bacterial infection is suppressed and she is taking the Deanna Protocol to help her damaged cells function correctly.
Onset of her symptoms occurred (we know in retrospect) in 2007. At that point, I had perceived some minor neurological symptoms, but in the absence of any other symptoms, I and other physicians did not connect these symptoms with a disease. One of those symptoms was that she had to look at stair steps to walk down stairs: Early loss of proprioception.
More severe symptoms and diagnosis of ALS occurred around 2009 and I began developing the first version of the Deanna Protocol around the 2009 – 2010 timeframe. As I tested more safe substances on Deanna and initiated studies on the substances in the protocol, the Deanna Protocol improved and evolved, and is continuing to do so as our research provides more information.
In 2015, we determined that Deanna had a Borrelia infection, we then began a combined treatment with the Cowden Support Program, the Three-Pronged IV Treatment for rapidly progressing Borrelia diseases, and the Deanna Protocol.
We did this for approximately three years. However, due to complicating factors, we did not start treating the Borrelia continuously until 2016. Prior to this, her cells continued to die off. The disease progressed much slower when on the Deanna Protocol. Despite the significantly slowed progression rate, the disease continued to progress. Her cells were still dying off and she was losing function. It was not until 2018, when Deanna had been on the Jemsek/Burasscano/ Miller pulsed antibiotic treatment method continuously for approximately two years, that disease progression stopped completely.
We are now attempting to regain this lost function. (See bibliography for citations.)
Treatment for Lost Function
So far, in Deanna, we have not been able to retrieve the dead cells or a significant amount of lost function due to lower motor neuron disease. However, upper motor neuron disease has responded well, and her brain fog has been eliminated. Certain types of treatments have led to improvements that, while very noticeable to her therapists, doctors, and myself, are not significant enough for me to deem them drastic. With the Deanna Protocol helping to keep cells alive, and the pulsed antibiotic method having eliminated the pathogen, the best we can do is retain and hopefully improve the function in the currently damaged cells.
Stem Cell Therapy Trials & Why They Failed
Dr. Alfred Miller and I hypothesize that the stem cell therapy does not work with ALS patients because the Borrelia bacteria in ALS patients attacks the new cells that are introduced via stem cell therapy. It makes sense, right? When a disease is spreading throughout a person’s body and you introduce new/healthy cells, wouldn’t the disease spread to those healthy cells too? We strongly believe this is the case and multiple physicians agree. If the medical community doesn’t believe it, it’s at least worth testing. But nobody is testing it … nobody.
Stem Cell Therapy for Deanna
Deanna received billions of stem cells from “Celltex” on three separate occasions six months apart. Cells were derived from her fat cells and translated into induced pluripotent stem cells in the laboratory. The cells were delivered into muscles, vein, spinal fluid and nebulized intranasal. She has had some benefit from these procedures.
Anecdotal evidence exists that autologous induced pluripotent stem cells administered intranasal can retrieve brain function by restoring the upper motor neurons. However, lower motor neuron dependent function is much more resistant to stem cell treatment.
I believe nerve growth factor derived from induced pluripotent stem cells translated to nerve cells may be more effective in restoring function dependent on the lower motor neurons. These factors are available and being applied in clinical trials for ALS and MS, but the infection has not been eradicated and I strongly believe that these trials will be unsuccessful. Both myself and Dr. Miller have attempted to point this out to those running the clinical trials, but to no avail.
For the past 10 + years, every ALS patient who has undergone stem cell treatments, various modalities, while the infection was still present has improved slightly, only to have their disease progress again. As the parent of an ALS patient, I wish I could promulgate this concept to save many people like my daughter.
Deanna is now undergoing muscle re-education and electrical stimulation. Once again, there has been some increased function that has been very noticeable (and even surprising) to her doctors and therapists, she has not experienced any improvements significant enough to increase her level of independence.
As you can see, this is an ongoing program and process, which I will continue to investigate, and I will continue to provide updates. Since this problem is not yet solved, I believe it is important to utilize the Deanna Protocol to keep cells alive because, if they die or are damaged, we don’t know if we can retrieve them and the resulting loss of function.
Hyperbaric Oxygen
We have also used an extensive treatment of hyperbaric oxygen, which did not provide discernible improvement in function.
While I continue to investigate ways to help Deanna regain function in her body, I am have also happened to uncover information about Borrelia and its connection to other diseases, such as Alzheimer’s Disease. To read more about my findings in this arena, click the link below. (See bibliography for citations.)
Borrelia Infection in Alzheimer’s & Other Neurodegenerative Diseases and Psychiatric Illnesses
ALS is the most severe form of a Borrelia infection. Other neurodegenerative diseases, psychiatric illness and CTE have also been connected to borrelia and at times other pathogens, trauma and or toxins. Dr. Alan MacDonald has documented Borrelia in Alzheimer Disease, as well as nematodes and Borrelia in MS at autopsy.
https://www.youtube.com/watch?v=GCLwauRh2gQ
Dr. Judith Miklossy has also independently documented Borrelia in Alzheimer Disease at autopsy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5457904/
According to Dr. Alfred Miller, every Parkinson’s Disease patient who has been tested appropriately for Borrelia has tested positive.
Dr. David Martz has also reversed his ALS with the proper antibiotics.
https://www.americanintegrative.com/doctor-created-a-treatment-plan-to-heal-himself-from-als/
We now have plenty of anecdotal proof from individual medical experts that neurodegenerative diseases can be caused by a Borrelia infection and probably co-infections.
Jane Marke, MD has documented infection as the etiological agent in psychiatric illnesses. This concept makes sense because cell signaling is compromised in diseases with abnormal microtubule function, which I discussed earlier. Psychiatric illnesses and neurodegenerative diseases all involve abnormal microtubules and, hence, abnormal cell signaling.
Study done by neurosurgeon Chad Prusmack MD consultant Denver Broncos and US Olympic team documenting how Traumatic brain injury [TBI ] has more severe consequences if one has a Tick borne disease [TBD]
Figure 1 – MSQ
Figure 2 – MSIDS
Figure 3 – Psychological Disorders Percent Total
PRIMARY RESEARCH
EVALUATION OF HOLISTIC TREATMENT FOR ALS REVEALS POSSIBLE MECHANISM AND THERAPEUTIC POTENTIAL
- What this article proves: the Deanna protocol corrects the malalignment of the microtubules that connect nerve cells to nerve cells and nerve cells to muscle. The microtubules are the pathways down which signaling occurs between cells. The function of the Tau protein is to maintain this alignment hence the Deanna Protocol restores the function of the Tau protein. Dementia is caused by abnormal signaling between brain nerve cells. Muscle symptoms are caused by abnormal signaling between nerves and muscles. Every neurodegenerative disease has dysfunctional Tau protein hence the Deanna protocol is beneficial in all neurodegenerative diseases such as ALS, AD, MS, PD and others. See link to article listed below.
- Link to Article: Click Here
- Link to Article About the Study: Click Here
- If link above is broken, look for article online using the title of article.
HUMAN CELL STUDIES FIND DEANNA PROTOCOL EFFECTIVE
- What this article proves: The Deanna Protocol is effective in correcting neuromuscular junction deficits in human ALS cells
- Link to Study: https://onlinelibrary.wiley.com/doi/10.1002/adtp.202000133
- If link above is broken, look for article online using the title and the source.
- The original title of the study is: A Human Based Functional NMJ System for Personalized ALS Modeling and Drug Testing
- The original title of the article is referencing the study is: ALS Chip Model Closely Mimics Disease May Aid Research
- Study Source: University of Central Florida
*Note: This study was not funded by Winning the Fight, but since the study directly tested the Deanna Protocol, it has been included under primary research page instead of the secondary research page (because the secondary research page mainly houses supporting evidence rather than direct studies on the Deanna Protocol).
STUDIES COMBINING DP PLAN WITH OTHER SUBSTANCES
- Glutamic-Oxaloacetic Transaminase Combined with Metabolic Therapy in a Mouse Model of Amyotrophic Lateral Sclerosis; Published to Site: April 30, 2017
DEANNA PROTOCOL ON CULTURED HUMAN MOTONEURONS IN VITRO
PLOS ONE JOURNAL STUDY
- Metabolic Therapy with Deanna Protocol Supplementation Delays Disease Progression and Extends Survival in Amyotrophic Lateral Sclerosis (ALS) Mouse Model – PLOS ONE Journal (ID #:PONE-D-14-14612R1); Accepted June 30, 2014 (in press)
Abstract
- Increased TCA cycle intermediates in response to diet with Deanna protocol in ALS mouse model (578.3) – The FASEB Journal vol. 28 no. 1 Supplement 578.3; April 2014
- Effect of Alternative Metabolic Fuels as a Potential ALS Therapy in Mice and Humans (poster for Atlanta Conference 2013) Published to Site: July 31, 2013
Primary Anecdotal Research by Winning the Fight
Below is an excerpt from a list of testimonies from 26 individuals with ALS, who testified that the Deanna Plan reversed, stopped, or slowed the progression of their ALS. Their ALSFRS scores reflect the accuracy of their testimonies.
Deanna Tedone-Gage
My father experimented with a number of supplements until we realized that taking three particular supplements (coconut oil, A-AKG and GABA) were reversing my disease. My coordination, speech, walking, and breathing improved. My twitching and tremors also lessened dramatically. Friends and family members noted my improvement and began to spread the word to others who had loved ones with ALS.
MJBUK
My answer is YES, I believe the Deanna Protocol has helped me and I am better than I would have been if I had not been on it.
DBLTREE
I started March 18th, 2013 and the Deanna Protocol has helped my swallowing, excess saliva, speech, balance and walking and I have maintained an ALSFRS of 43. I am thankful for the quality of life extension granted by God and the Deanna Protocol.
Andrew
Diagnosed with ALS in December 2011. Before doing the Deanna Protocol, I was in a steep decline for several months. I started the Deanna Protocol in December 2012. Immediately there was an improvement in breathing and muscle strength. For the approximately 6 months since, I have maintained my ALSFRS score. Thank you Deanna and Dr. Tedone. I have no doubt that I’d be stuck in bed by now without your Protocol.
Andrew
I started the Deanna Protocol and here are the results by month:
Walking with walker
Mo. 0 about 20 ft
Mo. 1 about 50 ft
Mo. 2 about 100 ft
Mo. 3 about 100 ft
Mo. 4 about 50 ft
Mo. 5 about 40 ft
Arm strength and hand grip measured in pulley fly repetitions
Mo. 1 28
Mo. 2 100
Mo. 3 200
Mo. 4 250
Mo. 5 300
Breathing measured by spirometer has been good and steady.
I had a temporary dip in months 4 and 5 in walking because I changed the A-AKG supplier which was a mistake. I have since gone back to NOW which seems to work best for me.
I think that getting the right amount of exercise is the key. Concentrate on enough cardio and stretching and very light strength and resistance. I think more frequency is better than long exhausting reps. A little bit at a time more often.
I was in a steep decline prior to starting the Deanna Protocol. So steady is outstanding for 5 months. Also, I am taking 180 g of protein a day.
Click Here: Read Full Report
SECONDARY RESEARCH
Research on Arginine (Substance in AAKG Supplement in Deanna Protocol Plan)
Arginine Corrected Metabolic Dysfunction in Children with Mitochondrial Diseases
- What this article proves: One of the substances in the Deanna Protocol Plan is arginine. Its purpose, along with Alpha ketoglutarate, is to deliver energy to the Kreb’s Cycle and, thereby, help the mitochondria function and prevent cells from dying. This piece of literature shows evidence that arginine is effective in correcting malfunctioning mitochondria.
- Link: https://www.newswise.com/articles/intravenous-arginine-benefits-children-after-acute-metabolic-stroke?sc=mwhn
- If link above is broken, look for article online using the title and the source.
- The original title of the article is: Intravenous Arginine Benefits Children after Acute Metabolic Stroke
- Source: Children’s Hospital of Philadelphia
Research on Bacteria and Neurodegenerative Diseases
ALS Patients Test Positive for Borrelia Infection
- What this article proves: This article proves that ALS is likely caused by the bacteria that belongs to the genus Borrelia. Up until now, Borreila was only thought to be the cause of Lyme disease, but Dr. Tedone hypothesizes that it also causes ALS. The Borrelia bacteria is very hard to detect in the body because, unlike other bacteria, the spirochete bacteria (spiral shaped bacteria) burrows into the soft tissue and is not present in the blood (other than red blood cells). Most tests for Borrelia are inefficient at detecting bacteria in soft tissue.
- Link: https://www.americanintegrative.com/wp-content/uploads/2016/06/ALS-and-LYme-I-am-pleased-to-announce-the-following.pdf
- If link above is broken, look for email online using the title and the source.
- The original title of the email is: I am pleased to announce the following
- Source: American Integrative Pharmacy; Martin Atkinson-Barr PhD
Borrelia Infection in Multiple Sclerosis
- Source: Alan McDonald, MD, FCAP – Dr. Paul H. Duray Research Fellowship Endowment, Inc
- What these videos prove: Multiple Sclerosis is likely caused by a borrelia infection.
- Link to Video 1: https://vimeo.com/166688480
- If link above is broken, look for video online using the title and the source. The original title of the video is: Alan McDonald London Lecture May 2016
- Link to Video 2: https://vimeo.com/user27613099
- If link above is broken, look for video online using the title and the source.
- The original title of the video is: London Lecture May 15 2016
Source: Dr. Alan MacDonald
Bacteria Found in Alzheimer’s Brain Post-Mortem
- What this article proves: Alzheimer’s Disease, like ALS, is likely linked to bacterial infection with borrelia
- Link to original video: https://vimeo.com/158001419
- If link above is broken, look for article/study online using the title and the source.
- The original title of article is: Final Lecture German Borreliosis Society Alan B MacDonald Lecture March 11 2016
- Source: Alan MacDonald
Borrelia Detected in the Brains of Alzheimer’s Patients
- What this article proves: The connection between borrelia bacteria and Alzheimer’s Disease
- Link to original article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171359/
- If link above is broken, look for article/study online using the title and the source.
- The original title of article is: Alzheimer’s disease – a neurospirochetosis. Analysis of the evidence following Koch’s and Hill’s criteria
- Source: Journal of Neuroinflammation
- Author: Judith Miklossy
Borrelia Present in Alzheimer’s Disease
- What this article proves: The connection between borrelia bacteria and Alzheimer’s Disease
- Link to original article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171359/
- If link above is broken, look for article/study online using the title and the source.
- The original title of article is: Borrelia burgdorferi persists in the brain in chronic lyme neuroborreliosis and may be associated with Alzheimer disease.
- Source: Journal of Alzheimer’s Disease
- Author: Miklossy J1, Khalili K, Gern L, Ericson RL, Darekar P, Bolle L, Hurlimann J, Paster BJ.
Disulfiram Cures Borrelia Infection – Use caution – This medication can cause psychotic episodes
- What this article proves: Disulfiram Cures Borrelia Infection
- Link to original article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6627205/
- If link above is broken, look for article/study online using the title and the source.
- The original title of article is: Disulfiram (Tetraethylthiuram Disulfide) in the Treatment of Lyme Disease and Babesiosis: Report of Experience in Three Cases
- Source: Antibiotics (Journal)
- Author: Kenneth B. Liegner
- Authors: Summer B. Gibson, Jonathan M. Downie, Spyridoula Tsetsou, Julie E. Feusier, Karla P. Figueroa, Mark B. Bromberg, Lynn B. Jorde, Stefan M. Pulst
Research on the Blood Brain Barrier
Blood Brain Barrier is impaired in ALS patients
- What this article proves: This study shows that the BBB in someone with ALS does not function normally and certain substances that normally should not be able to pass through the BBB are able to pass through in those with ALS. This is significant because some substances in the Deanna Protocol cannot pass the BBB in healthy patients. However, in those with ALS, who have a malfunctioning BBB, the substances are able to pass through. This allows these substances to make a positive impact on patients with ALS. For the layperson: the blood brain barrier is a highly selective semipermeable border that separates the blood from the brain (BBB). The BBB “chooses” what substances are allowed to cross through to the brain and which are not. Many medications and substances introduced into the blood cannot pass the BBB, which means they cannot impact the brain and nervous system.
- Link to original article: https://www.frontiersin.org/articles/10.3389/fncel.2014.00021/full
- If link above is broken, look for article/study online using the title and the source.
- The original title of is: Blood–CNS barrier impairment in ALS patients versus an animal model
- Source: Frontiers in Cellular Neuroscience
- Authors: Svitlana Garbuzova-Davis1,2,3* and Paul R. Sanberg
Blood Brain Barrier Breaks Down During Inflammation
- What this article proves: The Blood Brain Barrier is not in tact when inflammation occurs
- Link to original article: https://stm.sciencemag.org/content/9/397/eaai9111.full
- If link above is broken, look for article/study online using the title and the source.
- The original title of is: Glucose-regulated protein 78 autoantibody associates with blood-brain barrier disruption in neuromyelitis optica
- Source: Science Translational Medicine: Neurobiology
- Author: Fumitaka Shimizu1,*, Kristin L. Schaller2,*, Gregory P. Owens2, Anne C. Cotleur3, Debra Kellner3, Yukio Takeshita1, Birgit Obermeier3, Thomas J. Kryzer4, Yasuteru Sano1, Takashi Kanda1, Vanda A. Lennon4, Richard M. Ransohoff3,† and Jeffrey L. Bennett2,†
News Article – Woman Diagnosed with MS Actually Had Borrelia Infection (Lyme Disease)
- What this article proves: The link between MS and Borrelia
- Link to original article: https://www.dailymail.co.uk/health/article-2343062/Mother-diagnosed-MS-facing-life-wheelchair-cured–discovered-symptoms-TICK-BITE.html
- If link above is broken, look for article/study online using the title and the source.
- The original title of article is: Mother diagnosed with MS and facing life in a wheelchair is cured – after she discovered her symptoms were due to a TICK BITE
- Source: DailyMail UK
News Article – Massachusetts Woman Diagnosed with ALS Dies of Borrelia Infection (Lyme Disease)
- What this article proves: The link between ALS and borrelia
- Link to original article: https://www.huffpost.com/entry/man-diagnosed-with-als-di_b_8891262
- If link above is broken, look for article/study online using the title and the source.
- The original title of is: Mother diagnosed with MS and facing life in a wheelchair is cured – after she discovered her symptoms were due to a TICK BITE
- Source: DailyMail UK
Research on Toxins and Neurodegenerative Disease
The articles below support Dr. Tedone’s point that toxins likely play a role in ALS and neurodegenerative disease. In 2009, when Dr. Tedone began his research, mainstream medicine did not accept that toxins play a role in ALS and the popular opinion was that non-genetic forms of ALS happened completely at random. Now, the role of toxins in ALS is documented and becoming more accepted in mainstream medicine. New research has given light to a new theory. According to Dr. Tedone and some others studying neurodegenerative diseases, Borrelia bacteria is likely the real cause of neurodegenerative disease. Toxins are likely just an aggravator. What does this mean? Someone can have this bacteria in the body for a long time (even decades) without being sick because the immune system can keep the bacteria under control and prevent it from multiplying enough to cause disease. Dr. Tedone and his colleagues hypothesize that environmental factors (such as toxins and stress) can suppress the immune system and prevent it from keeping the bacteria under control. A suppressed immune system allows the bacteria that’s already there to multiply, attack the nervous system, and cause disease. While the studies below don’t address Borrelia bacteria and its role in ALS, they do address the fact that toxins in the environment are strongly correlated with onset of neurodegenerative disease symptoms.
ALS from Mercury in Amalgam Fillings
- What this article proves: A toxin, Mercury, could possibly be a cause of ALS, likely if the Borrelia bacteria is already present in the body.
- Link to original article here: https://www.ncbi.nlm.nih.gov/pubmed/28641283
- If link above is broken, look for article/study online using the title and the source.
- The original title of is: Healing of Amyotrophic Lateral Sclerosis: A Case Report
- Source: Science Translational Medicine: Neurobiology
- Author: Healing of Amyotrophic Lateral Sclerosis: A Case Report
Three Teachers in Same Classroom Suffer from ALS
- What this article proves: ALS is only present in roughly .00595% of the American population (about 16,000 people out of the 270 million living in the U.S.). Due to the rarity of this disease odds of three unrelated teachers who worked in the same classroom all randomly contracting ALS by chance are extremely low. This leads to the probability that their ALS as brought on by an environmental cause. The full article is only available by paid subscription to medical research journals, but the abstract is here.
- Link to original article here: https://www.ncbi.nlm.nih.gov/pubmed/3655851
- If link above is broken, look for article/study online using the title and the source.
- The original title of is: Three cases of amyotrophic lateral sclerosis in a common occupational environment
- Source: Department of Neurology, Ohio State University Medical Center
- Author: Hyser CL1, Kissel JT, Mendell JR.
Toxins in Blue Green Algae Can Cause Nerve Degeneration
- What this article proves: This study proves that environmental factors such as toxins (and a particular toxin called BAMA in blue green algae) can cause neurodegenerative disease.
- Link to article: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0075376
- If link above is broken, look for article/study online using the title and the source.
- The original title of is: The Non-Protein Amino Acid BMAA Is Misincorporated into Human Proteins in Place of L-Serine Causing Protein Misfolding and Aggregation
- Source: PLOS One Research Journal
- Author: Rachael Anne Dunlop1, Paul Alan Cox2, Sandra Anne Banack2, Kenneth John Rodgers1*
Lead Exposure as a Risk Factor for ALS
- Source: National Institute for Environmental Health Sciences
- What this article proves: This article proves that lead exposure is linked to increase probability of ALS.
- Link to article: https://www.ncbi.nlm.nih.gov/pubmed/16909025
- If link above is broken, look for article/study online using the title and the source.
- The original title of is: Lead Exposure as a Risk Factor for Amyotrophic Lateral Sclerosis
- Author: Kamel, F; Umbach, DM; Hu, H; Munsat, TL; Taylor, JA; Sandler, JP
List of Toxins and How They Impact the Body
- What this document proves: This document is a list of poisons known to cause neurological disease
- Link to article: There is no link. This is a snippet from a medical book.
- Book: Casarett & Doull’s Toxicology. The Basic Science of Poisons, 8th (2013).
Workplace Exposure to Toxins & ALS
- Source: National Institute of Environmental Health Sciences
- What this document proves: This document proves that construction workers and precision metal workers, who are exposed to a variety of toxins in their daily work, are more likely to have ALS.
- Link to article: https://www.ncbi.nlm.nih.gov/pubmed/27418175
- If link above is broken, look for article/study online using the title and the source.
- The original title of is: Occupational exposures and the risk of amyotrophic lateral sclerosis.
- Source: Peters TL1,2, Kamel F2, Lundholm C1, Feychting M3, Weibull CE1, Sandler DP2, Wiebert P4, Sparén P1, Ye W1, Fang F
Research on ALS & Genetics
The Evolving Genetic Risk for Sporadic ALS
- What this article proves: There is a genetic component to sporadic ALS. Dr. Tedone believes it’s possible that the Borrelia bacteria in ALS (when they reproduce) enter the cells and interrupt the energy cycle of the cell. In doing so, they cause gene mutations in the cell.
- Link to original article: https://n.neurology.org/content/89/3/226
- If link above is broken, look for article/study online using the title and the source.
- The original title of article is: The evolving genetic risk for sporadic ALS
Source: American Academy of Neurology
