Like everything else, this section concerning the research topics has been prepared by Raffo and Stagnaro, who are not physicians but are understandably particularly interested in this terrible disease. Albeit with some inappropriate and non-technical words and phrases, the following points are the outcome of exchanges of opinion, conversations, and further analyses emerging from meetings between Raffo and Stagnaro, who have always agreed completely on the various solutions or strategies to attempt.
Before talking about research topics, it is probably a good idea to make it clear that nothing is known about the cause (or etiology) of ALS, nor about a cure for the disease – and here, by a cure for ALS, we mean completely stopping any progression of ALS. We only know of one drug (Rilutex) that generally prolongs a patient’s life by three months, and of trials (experimental studies) that seem, in sporadic cases, to have brought some benefit.
At this point, however, we can – or rather must – hazard a few hypotheses, otherwise we will be obliged to carry on saying that “nothing is known about the cause of ALS, nor about a cure for the disease”, staying stuck in the same place, with this depressing state of affairs, not even attempting to move on. So now let us proceed according to the approach taken in any field of scientific research, i.e. if these preliminary hypotheses prove to be unfounded, we shall move on to others suggested by other patients, other researchers, or any other people (hence the Forum on this website) until we find some answers … however long it may take.
There are various forms of ALS. We refer here to the worst of them, which is also the most common, and the one from which Raffo and Stagnaro Junior suffer from, although the latter has a more indolent form of the disease than Raffo.
ALS causes the progressive death of the motor neurons, which are the cells that innervate the skeletal muscle fibers. The skeletal muscle fibers first become weak, then atrophy sets in, and their death leads to a progressive weakening of the muscles until the skeleton comes to a halt, consequently preventing all movement, including breathing and swallowing. The muscle fibers of the heart and those of the smooth muscles, such as the digestive tract, remain unaffected. The first muscles to be affected are those of the limbs, especially the muscles of the lower limbs.
It seems to us that to the following facts stand out:
1) ALS resembles a slow, though not extremely slow process of “poisoning”. This poisoning or, if you will, the cause that triggers ALS, may begin with a genuine poison (be it nervine or otherwise) injected into the body by a predator, or by a cat with rabies, for instance, possibly at a time when the individual’s immune defenses were particularly weak;
2) the poisoning and/or cause that triggers ALS mentioned in item I above may have to do with a parasite, e.g. an insect injecting bacteria, or a virus, or its own eggs (instead of a poison) in the individual’s body;
3) the poisoning and/or triggering cause might instead be a form of pollution (asbestos, weed killers, pesticides,…); [There is no need to go on, for the purposes of these Research Topics, since this extremely important issue is well known and clear to us all];
4) ALS is a disease so terrible that we have the impression that maybe our “vegetative brain” is unable to become aware of its presence, and of its effects in particular, because it fails to pick up the impulses from the diseased part of the body; or maybe the “vegetative brain” is aware of the diseased part but encounters obstacles when it attempts to transmit the corrective impulses through the synapses or other means. In both cases, the brain might be facilitated if we seek to remove the impediments or inhibitions with the aid of neurotransmitters (e.g. with combinations of suitable pairs of psychoactive drugs).
N.B. By “vegetative brain”, we mean not the thinking brain, but the one that coordinates all our movements; that is to say the one that has a nerve ending for every single cell in every myocardial muscle fiber, given the enormous importance of the heart. The skeletal muscles, on the other hand, are innervated via the second motor neuron, which innervates the various muscle fibers as a whole (and not the single cells of the fibers).
As concerns item 1), we might add the following considerations.
Now let’s move on to some considerations concerning item 2), on the issue of insect bites.
We need to try to establish without delay whether Borrelia, or Lyme disease – transmitted to humans by infected ticks – can trigger some types of ALS.
Why Borrelia in particular? Above all, because it is associated with a long story that has yet to be explained, and here we suggest that any reader interested in confusion take a look at the websites:
E:\ALS\Lyme and ALS.mht
E:\ALS\Home Page for Dean Chioles.mht
Secondly, because behind this confusion there is a lengthy, shameful speculation that has to be stopped. We hope that, if we can shed some light on this issue, then some promising new information may emerge to improve our understanding of ALS.
Thirdly, because nearly everybody in Liguria has been bitten by ticks at some time or other, including Stagnaro Junior, his father and his grandfather. Liguria, and Sestri Levante and the surrounding area in particular, where there is a sizable number of patients with ALS (far beyond the national average) is consequently an ideal environment for conducting such research. We need to remember that 25% of ticks are infected, i.e. capable of transmitting Borrelia, which seems to be a far from negligible proportion.
We know of a person, who has since died, who suffered from Borrelia and ALS.
Giovanni Raffo has not been bitten by a tick (as far as we know), but he is allergic to bee stings. He was bitten by an insect in Imola in June 2007 and he still carries the sign of that bite, which was possibly the work of an Asian tiger mosquito. We discovered that:
“The tiger mosquito (a potential carrier of various viruses pathogenic for human beings) has recently proved capable of transmitting a tropical viral disease (called Chikungunya fever) in various regions of Italy. In the summer of 2007 in particular, an epidemic focus was identified in the area of Castiglione di Cervia and Castiglione di Ravenna, also spreading to the areas around Rimini, Cesena and Bologna. The classic symptoms of this disease are represented by: severe fever of abrupt onset, severe joint pain, muscle asthenia and sometimes skin rash. The symptoms generally regress within 10-15 days, but in some cases the joint and muscle symptoms may persist for months. There have been no cases of permanent or progressive paralysis typical of ALS”.
On the other hand, we do not know what the reactions might be to a tiger mosquito bite in an individual allergic to bee stings like Raffo, whose allergy could trigger very different reactions from the “classic symptoms” caused by the Chikungunya virus. In other words, the tiger mosquito’s bite might have been responsible for the onset of ALS in this particular individual, because of his allergy and possibly also because his immune defenses were low at the time.
We have also to say that Giovanni fell down in his work place from an height about of 10 meters hiting the head.
Now let’s move on to some considerations conserning item 4).
Ezio Stagnaro knows some people who have overcome their symptoms by means of combinations of psychoactive drugs. These combinations involve, for instance, Tofranil and Valium, or Laroxyl and lorazepam. But the use of combinations of psychoactive drugs to treat ALS seems to have disappeared into thin air.
When Stagnaro Jr first began to suffer from the disease, Stagnaro Sr asked the doctors who were taking care of his son whether treatment with combinations of psychoactive drugs might work and many simply answered, “No!” and went so far as to explain why, although only minutes beforehand they had said that nothing was known about what causes ALS or how to treat the disease. Some of them, though only a few, answered more coherently, “Stagnaro, as I have just told you, we really know nothing on the matter”. Others said that, “Evidence was needed before any experiments could be conducted”. A friend said, “If it really worked, they would already have discovered it”.
After a while, Stagnaro stopped questioning the doctors who were looking after his son and let the matter drop … until a doctor that he had previously consulted told him that,
“ … Lithium is marketed for manic depression and therefore also works as an antidepressant (returning to the matter of the importance of the psyche that you pointed out)”.
After receiving this information, Stagnaro decided to meet Francesco Fornai, who, together with other co-workers, has conducted a pilot study using lithium salts with a view to slowing the progression of ALS.
Again as a result of said information, Stagnaro started asking around the world if anyone knew about these combinations of psychoactive drugs, and particularly if they had ever been tested to stop the progression of ALS. NOBODY answered his questions. [x lettera]
It is worth adding that his questions were sent to specialists, people who had previously answered other questions.
The first question that Stagnaro wants an answer for is, “Why can’t we test a treatment, that carries no major contraindications, with a specific combination of psychoactive drugs and then study the “evidence” of the effect of these drugs?”
Stagnaro’s second question is, “How is it possible that all the information collected on the combinations of psychoactive drugs has been lost?” To be honest, we thought that the loss of information belonged to the remote past. For instance, in Ancient Greece, Eratosthenes had succeeded in demonstrating that the Earth was round by measuring the length of the Earth’s meridian (and therefore of the Equator) with a remarkable degree of approximation (roughly 40,000 km), based on observation of the different shadows produced by the same object in Egypt and in Greece. But people continued to believe that the Earth was flat for a long, long time afterwards. Even after it had been established that the Earth is round, in 1492 it was generally believed that the length of the Equator around the Earth was 20,000 km and Christopher Columbus continued to use the name India for the land that was subsequently to be called America simply because, on the assumption that the Equator was 20,000 km long, India would come to be in the space occupied by America.
These days, there is no excuse for information being lost, especially when it concerns a very severe disease and could consequently cost the health and life of many people. THE MATTER IS EVEN MORE ATROCIOUS IF THE INFORMATION HAS BEEN DELIBERATELY MISLAID. IS THIS THE CASE? IF SO, WHY? IS IT BECAUSE THESE PSYCHOACTIVE DRUGS ARE VERY CHEAP? … BECAUSE AROUND THE WORLD THERE ARE SO MANY OTHER DRUGS THAT IT IS IMPORTANT TO SELL AT ALL COSTS?
We are counting a great deal on being contacted by people who know how the situation stands, it is not a question of confidentiality (or privacy). Even if this misinformation is based on ignorance, we are optimistic: we do not believe there are all that many ignorant people around the world. You can write to us, even anonymously and on paper, you have our addresses. The explanations that we have come up with concerning this issue (as hinted at above) are DISTURBING and they particularly worry Stagnaro, who has been teaching for a lifetime in the field of information engineering (Electronics, IT and telecommunications), and who has chosen mathematics because it is part of every human being’s heritage, it can be shared by all, unhindered by any form of copyright, other than the practice of attributing to a theorem the name of the person who was the first to prove it.
E-mail [ sent to Stagnaro by a regional representative of the AISLA]
Subject: DNA and ALS — dated: 08/03/2009
I have the impression that many of our illustrious researchers are circulating news of their discoveries as we come closer to events that tend to distribute funds, and once they have pocketed the money they sneak back into their caves.
I have also gained the impression how they take first prize for trashing any schemes other than their own. I may be wrong…
I am sending you news of the recent discovery mentioned in Science Daily, I don’t think the Italian contribution to this discovery was very important, unless it is a case of a different discovery, but I doubt that I’ll be proved wrong”.
I am writing to ask you for help. I have questions about the combinations of psychoactive medicines, by which I mean medicines like Laroxyl (amitriptyline) and lorazepam.
My son has a diagnosis of ALS (Amyotrophic Lateral Sclerosis) and I know of two experiences of other diseases being cured using a suitable combination of psychoactive drugs. So, to put it briefly, I would like to know if any trials have been conducted using a pair of psychoactive medicines to delay the progression of ALS.
Before going into details about the pairs of psychoactive drugs concerned, please let me introduce myself: my name is Ezio Stagnaro and (in addition to being the father of a son with ALS) I am professor of geometry at the Faculty of Engineering at the University of Padova (Italy). I am director of a research group on algebraic geometry and I am known internationally in my research field.
The two experiences with psychoactive drugs that I know of are as follows.
In the first experience, the patient had severe aerophagia which made him vomit everything he ate. The successful combination of psychoactive drugs in this case was: Tofranil (imipramine) coupled with Valium.
In the second experience the patient had a deafening tinnitus in one ear that was becoming so severe that the patient could hear nothing else. A combination of Laroxyl and lorazepam was administered and these medicines reduced the tinnitus to an acceptable level and the patient is now hearing very well.
Roughly speaking, in non-technical terms, the psychiatrist explained that the pairs of psychoactive medicines work in the following way: the first psychoactive drug acts as a “stimulant”. It stimulates the brain to work hard and it is allowed to take effect for 3-4 hours. Examples of this type of psychoactive drug are Tofranil, Laroxyl, … . Afterwards, the second psychoactive drug administered 3-4 hours after the first is a “tranquillizer”, e.g. Valium, Lorazepam,…, in order to counteract the stimulant action of the first psychoactive drug and avoid its action being either too long or too strong, and consequently dangerous.
In order to understand how these combinations of psychoactive medicines worked, the following experiment was conducted: Laroxyl was taken alone (without coupling it with Lorazepam) and it did not work; but when Laroxyl + Lorazepam were taken, they worked very well, even in large doses, and they cured the patient.
The doctor who prescribed these combinations of psychoactive medicines died several years ago without publishing any articles on these treatments. He was heard to say: “I am unable to explain why the pairs of psychoactive medicines work, but they work”.
In a pilot study at the University of Pisa (Italy), Francesco Fornai and others recently introduced lithium carbonate with a view to delaying the progression of ALS. I met Fornai in Pisa.
Clearly, I am talking here about using a combination of psychoactive drugs with a view to curing a disease such as ALS. I am not talking about using a couple of psychoactive medicines to treat depression in patients with the disease.
Having said all that, my questions are:
“Everywhere around the world, such psychoactive drugs are more or less severely forbidden because, if they are not taken in combination, many of them may lead to cases of suicide, or have severe toxic side effects, and so on. I know these facts, BUT HOW IS IT POSSIBLE THAT NOBODY IS TALKING ABOUT THESE COMBINATIONS OF PSYCHOACTIVE DRUGS? DO YOU KNOW IF ANY TRIALS HAVE BEEN CONDUCTED USING PAIRS OF PSYCHOACTIVE DRUGS TO DELAY THE PROGRESSION OF ALS? DO YOU KNOW OF ANY PSYCHIATRISTS OR NEUROLOGISTS WHO PRESCRIBE SUCH PAIRS OF PSYCHOACTIVE DRUGS?”
With many thanks in advance and best wishes.