My Personal Problems
All Rights Reserved
Egret Publishing Inc. May 2000
Section One: Symptoms
There have been some changes in my throat. I used to be able to put
three or four grapes in the mouth and never had any problem.
When I eat orange, I have to lean slightly forwards to prevent the
juice getting into the wrong passage. Recently I choked on my own
saliva on three different occasions. I have muscle twitching all the
time and cramps and muscle spasms in the legs and feet or ankles, it
usually occurs while awakening in the morning. Does the strange
sensation at my ankles indicate the beginning of foot drop? I have
suddenly lost my stamina. On a bad day even walking a short
distance is a problem. I used to be able to run one hundred metres at
a reasonable speed. Now if I run just fifty metres slowly, it will take
me all afternoon to recover. All these indicate a probability of ALS
(amyotrophic lateral sclerosis or Lou Gehrig's disease or motor
neurone disease).
I also have lower back pain with itchy skin. It used to occur when I
injured my back due to overexertion. Now it seems to occur after
some insignificant physical actions, resulting in inflammation of
capillaries, muscle, joints and bones. Gas attack is a problem
especially when I eat a big dinner. I have this problem since the
nineteen seventies. Now it is getting worse even an extra cup of hot
tea can set it off.
All these three problems are interrelated. If "A" is better then "B"
or "C" may get worse or vice versa. Arthritis patients do not just
have joint problems alone. Many of them also have neurological
problems as well. Crohn's disease patients usually have lower back
problems. Some ALS patients have skin problems. Once at an ALS
web board, I noticed a few posts about dry coughs. Some stated that
they started to cough as soon as they started to talk. I responded
with a post about a probable link between ALS and asthma. That set
off a flurry of posts about ALS patients with asthma. I even got a
few e-mails about asthma from ALS patients.
Section Two: Probable Cause
Can these widely different diseases be caused by the same thing?
Yes they can. Just imagine an antigen which can cause the immune
system to overreact, leading to inflammation of blood vessels. A
number of these antigens circulate in the blood stream, moving and
causing inflammation from place to place. The type of disease would
depend on the location of the inflamed blood vessels. If it is near the
neurological systems, it would cause neurological problems. If it is in
the respiratory system, it would cause respiratory problems. It
depends on where the antigens go. The intensity of the problem
would depend on the number of the antigens.
There is one antigen capable of causing all these. That is the antigen
of Hansen's bacterium. For detail, see my hypothesis. The
hypothesis is theoretically justified in my two booklets. Shortened
versions of these two booklets are available free on line. DNA of the
bacterium can be detected by means of PCR or GC/MS methods,
available since the nineteen eighties. Research work could have been
accomplished long ago, if it had not been a lack of will. It is also very
unpleasant to suggest that these chronic debilitating diseases are
caused by infection, because it would be difficult to get health care
personnel to take care of the patients. I can recall some newspaper
articles in which someone suggested these chronic debilitating
diseases might be caused by bacterial or viral infection and he was
attacked for suggesting it by the president of some foundation or
association. If we continue to treat people with hostility for
suggesting bacterial or viral infection as a probable cause for these
chronic debilitating diseases, no research funding will be allocated
and no research work will be done along this line. Even there is
funding, but people may be too scared for their career to apply for
the funding. Another reason is that in advanced countries, scientists
consider Hansen's disease no longer relevant. There is a parallel
case in paleontology. We think that dinosaurs are extinct but latest
evidences indicate it was warm-blooded and had a complex heart
and birds may be its close relatives. Finally people do not like
"unpleasant" ideas even it is correct and the argument is cogent.
Section Three: Course of Action
The logical thing to do is to take thalidomide to calm down the
immune system and then check for infection by Hansen's bacterium,
treated with antibiotics if positive. Chemotherapy may cause
damages to the liver and kidneys and may cause further immune
reaction. Just treatments of thalidomide will not stop the bacteria
multiplying. Without antibiotic treatment, the bacteria will continue
to multiply, resulting in more antigens, leading to more
inflammation and higher dosages of thalidomide required to
counteract more severe immune overreactions. This is a real
dilemma. Procrastination is part of human nature. Maybe I am in
denial. If I am not infected with Hansen's bacterium, my case is
hopeless. If I am infected, it can lead to diabetes, kidney failure,
asthma, necrotizing vasculitis, toxic shock syndrome and multiple
organ failure (see also Supplement). This is even worse. I feel as if I
am sitting on a time bomb.
There are no easy ways to tell one's relatives and friends,
considering the predicament. We tend to assume that diseases of
unknown causes are not infectious until proven otherwise. Now
stomach-ulcer has been proven that it is due to infection but curable
with antibiotics. If ALS is infectious but curable, would it be better
than incurable but "noninfectious?" I think it is better to tell them
in a straightforward manner whatever it is. How many of our
relatives and friends have been afflicted by stomach ulcer? How
many of them have asthma, arthritis, diabetes, Parkinson's, Lou
Gehrig's, Alzheimer's, Crohn's diseases, dementia, lymphoma (ICD
202), cancer (skin, breast, testicular)? Most diseases are infectious
even heart attack and high blood pressure may be due to infection.
Now we realise the probabilities of their being infectious.
Therefore, there may be more infectious diseases than we used to
think. Does it make any difference in our relationship with our
friends and relatives, considering the probability of being infected
by a nasty bacterium? It might at the beginning. It is best to face the
problem now than later.
Apart from thalidomide treatments to stop inflammation, I need to
check for infection of the bacterium. I need an infection specialist
and a prescription of thalidomide. These can be found in the
department of tropical medicine. This is the route I am taking.
Results will be posted here when it is available.
I hope my experience will be helpful to those suffering from ALS
and related diseases listed above.
Ching-Chee Chan, Ph.D.
May 31, 2000
A Reader's Question
tvw: My husband was diagnosed with ALS, but was convinced that
he might be suffering from Lyme disease instead. So he has been
treated for Lyme disease for two months without any change but
with a lot of herxheimer reactions. What should we do?
Reply: Assuming my hypothesis is correct, these two diseases are
caused indirectly by the antigens of Hansen's bacteria. Lyme disease
may be activated by an intercurrent infection, B burgdorferi, a
spirochaete. ALS is probably an accumulative result of past episodes
of ENL (erythema nodosum leprosum) activated by mental or
physical stress, therefore more serious. In both cases, the DNA of
Hansen's bacterium can be detected by PCR methods. In the case of
Lyme disease, the spirochaete can be detected by conventional
methods. All these infections can be treated by antibiotics and ENL,
very similar to herxheimer reactions, can be treated with
thalidomide. Muscle pain due to inflammation of blood vessels
(capillaries) caused by ENL may be alleviated with thalidomide
treatments.
When the intercurrent infection, B burgdorferi activating Lyme
disease, is eliminated, the disease may still progress to phases 2 and
3, involving the muscle, heart and the neurological systems. I suspect
phases 2 and 3 may actually be ENL which can be treated with
thalidomide. ENL may calm down by itself after the intercurrent
infection is removed and the patient appears to have recovered.
Assuming my hypothesis is correct, the real culprit, Hansen's
bacterium, should be eliminated if detected.
For ALS, thalidomide treatments may temporarily stop the
progression of the disease by calming down ENL, inflammation of
blood vessels, leading to damage in the neurological systems. In
order to cure the disease, the real culprit, Hansen's bacterium, has
to be detected and treated with antibiotics, assuming my hypothesis
is correct. The human body may be able to repair neurological
damage if the patient is relatively young. I suggest you consult an
infection specialist and a neurologist.
Readers are welcome to e-mail me to discuss relevant problems.
Ching-Chee Chan, Ph.D.
July 13, 2000
Readers are welcome to e-mail me to discuss relevant problems.