The link below is a Boston radio program in which Dr Alfred Miller is interviewed. We have been collaborating and sharing information for several years and he has been very helpful in treating Deanna.
I urge all who have Lyme disease or neurodegenerative diseases such as ALS, PD, AD ,MS, fibromyalgia, Chronic fatigue syndrome, RA or Lupus and many others to listen to this presentation.
Bacteria & ALS - Changing the direction of research for Neurodegenerative Diseases - By Dr. Vincent Tedone M.D.
The Purpose of This Letter
The purpose of this letter is to:
What To Do If You Think You Might Have A Borrelia Infection - A letter from Dr. Tedone with information on testing for Borrelia bacteria
Dear WFND Subscribers:
There is anecdotal and laboratory evidence that ALS, MS, and perhaps some Alzheimer disease are caused by the borrelia bacteria.
Medical science has a difficult time detecting the borrelia bacteria. This has been documented by many people with ALS (pALS) initially testing negative for a borrelia infection to rule out Lyme disease, but then testing positive in late stages of their disease.
There is a host response to the borrelia bacteria which is a lowering of natural killer (NK) lymphocytes in response to the borrelia infection.
Who should be tested?
If an individual has a neurological deficit or cognitive impairment of unknown cause, testing for NK lymphocytes will indicate contact with the borrelia infection, and can be used to justify treatment for the borrelia infection. This approach is much more acceptable than watching and waiting while the individual continues a downhill spiral.
Where can I be tested?
After many unanticipated delays the scientists at University of South Florida (USF) are moving forward with the experiment to determine the efficacy of the Deanna Protocol® Plan when combined with glutamic oxaloacetate transaminase (GOT). The experiment is being performed in steps using SOD1-G93A mice.
The next step is to collect the first of weekly biometric and behavioral data and separate the mice into experimental groups. The experiment includes four treatment groups: standard diet (SD); SD + Deanna Protocol® Plan (DP); SD +GOT + oxaloacetate (OX); SD + DP + GOT + OX.
Mice will be humanely euthanaized when disease progression, as determined by the USF veterinarians, is causing undue suffering. Tissues (muscles, brain and other organs) will be collected, processed and analyzed to see what effects the various treatments had. Once results are evaluated and available, an additional update will be shared on the website.
What were the delays?
Please continue reading for more details from the lab regarding the experiment. Results of the experiment will be shared in an additional blog post.
Dr. Tedone's Response to Dr. Bedlack's Criticism of Deanna Protocol® Plan on ALS Untangled Webinar on April 3, 2016
Responding to Dr. Bedlack’s Criticism of the Deanna Protocol® Plan
The webinar hosted by Dr. Bedlack for ALS Untangled criticized the Deanna Protocol® Plan. One criticism states that documentation of the DP™ Plan is faulty because it only reported on those patients who did well and did not include many other patients and, therefore, the data was biased. He is absolutely correct.
Regardless of the aforementioned bias, the fact that there are individuals who are improving and stabilizing for years (and some indefinitely) while following the DP™ Plan means that it delivers results better than those of any pharmaceutical ALS treatments on the market today. This is a fact that cannot be negated by lack of data on those who did not see improvements while on the DP™ Plan.
Regarding the bias in the data collection, Bedlack failed to mention that it is impossible to gather unbiased data because large amounts of data are nearly impossible to collect, given the limited number of PALS in any one geographic area. Winning the Fight has attempted to remedy this problem and has succeeded somewhat, but we have a ways to go. We began asking PALS to periodically record their ALSFRS scores on our website and, as a result, roughly 2,000 PALS have registered on our personal database. Those who have reported their scores have reported that they have declined less than the average amount and some have not declined at all.
In our PLOS ONE peer reviewed research paper in another sample, we reported on 40 out of 41 patients. One patient passed away. The success rate in this group was 70% with ALSFRS scores lower than the average. What happened to the PALS that did not respond? We don’t know.
Methodology vs. Common Sense
This is a situation where experts accept methodology over common sense, which is correct in most cases. However, in cases in which patients suffer from aggressive illnesses that will kill them in two to five years, common sense must reign supreme if it leads to a better outcome for patients. If the DP™ Plan yields better results than any other solution on the market, does it really make sense to say that nobody should use it because the methodology is imperfect? If we agree to this school of thought, what we’re really saying is that PALS should choose a definite and horrible death over an imperfect methodology that can improve their quality of life and extend their lives. Would you rather die a horrible death than accept imperfection?
Deanna Protocol® Plan vs. Pharmaceutical ALS Treatments
Neuroscientists have been trying to find a treatment to keep ALS patients alive for over 100 years, and patients continue to die within two to five years of diagnosis. The medical research community has spent many billions of dollars in this endeavor and watched tens of thousands of patients die horrible deaths. What result has this yielded? The greatest success in the ALS research community so far is a chemical called Riluzole, which extends life for 2 months and can damage the liver. Contrast the above with an over-the-counter, natural, non-harmful, metabolic solution that laboratory studies have proven effective in mice and anecdotal evidence has proven effective in humans.
The ALS association and other organizations focused on ALS research do much to benefit the ALS population. They provide services, provide assisted technology, raise awareness, and more. Despite the good these organizations do, they do a disservice to patients by overlooking the DP™ Plan, a solution that many PALS say helps. Is it a Cure? No, but it is better than nothing...which is what the medical community currently offers.
We believe that the DP™ Plan can be improved with research, but funding is necessary to continue this research. Rather than continue to waste so much money on chemicals that have little basis for their benefit to PALS, why not divert some money for research to help current PALS. Why not contribute to helping preserve their ability to function, lead more comfortable lives, and live longer lives? Ask the PALS using the DP™ Plan. Most will support the idea.
Vincent M Tedone M.D., F.A.A.O.S.
AIRED: December 28, 2015– 11 am PST
TITLE: “The Deanna Protocol®: Hope For ALS and other Neurological Conditions”
SPECIAL GUEST: Dr. Vincent Tedone
AUDIO REPLAY/DOWNLOAD: http://answersforthefamily.com/the-deanna-protocol-hope-for-als-and-other-neurological-conditions-dr-vincent-tedone/
Dr. T. and Deanna discuss the development of the protocol with reporter Gina Pitisci. When Dr. Vincent Tedone’s daughter was diagnosed with ALS in 2007, he told her she would beat the disease. Deanna Tedone Gage was an attorney, recently married and starting her life when she learned her diagnosis at age 30. "Without my father, I would not be sitting here talking to you today,” she said. “He not only provided a method to keep me alive, but he also gave fuel to my positive attitude." Doctors gave her little hope. But she and her father decided to create their own. That’s how the Deanna Protocol® was born.
"All traditional research currently in progress is based on finding a pharmaceutical drug to cure ALS. Meanwhile, metabolic researchers at Winning the Fight believe they have found an additional supplement that might provide a therapy that can stop the disease in its tracks."
Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is a neurodegenerative disorder of motor neurons causing progressive muscle weakness, paralysis, and eventual death from respiratory failure. There is currently no cure or effective treatment for ALS. Besides motor neuron degeneration, ALS is associated with impaired energy metabolism, which is pathophysiologically linked to mitochondrial dysfunction and glutamate excitotoxicity. The Deanna Protocol (DP) is a metabolic therapy that has been reported to alleviate symptoms in patients with ALS. In this study we hypothesized that alternative fuels in the form of TCA cycle intermediates, specifically arginine-alpha-ketoglutarate (AAKG), the main ingredient of the DP, and the ketogenic diet (KD), would increase motor function and survival in a mouse model of ALS (SOD1-G93A). ALS mice were fed standard rodent diet (SD), KD, or either diets containing a metabolic therapy of the primary ingredients of the DP consisting of AAKG, gamma-aminobutyric acid, Coenzyme Q10, and medium chain triglyceride high in caprylic triglyceride. Assessment of ALS-like pathology was performed using a pre-defined criteria for neurological score, accelerated rotarod test, paw grip endurance test, and grip strength test. Blood glucose, blood beta-hydroxybutyrate, and body weight were also monitored. SD+DP-fed mice exhibited improved neurological score from age 116 to 136 days compared to control mice. KD-fed mice exhibited better motor performance on all motor function tests at 15 and 16 weeks of age compared to controls. SD+DP and KD+DP therapies significantly extended survival time of SOD1-G93A mice by 7.5% (p = 0.001) and 4.2% (p = 0.006), respectively. Sixty-three percent of mice in the KD+DP and 72.7% of the SD+DP group lived past 125 days, while only 9% of the control animals survived past that point. Targeting energy metabolism with metabolic therapy produces a therapeutic effect in ALS mice which may prolong survival and quality of life in ALS patients.