Continues from part 1
My Personal Problems: Part 2
All Rights Reserved
Egret Publishing Inc. November 2000
Section One: Seeing an Infection Specialist
In a certain web board, some ALS patients stated that ALS was a
death sentence but Lyme disease was a life sentence without any
possibility of parole. Since the symptoms of Lyme disease are rather
similar to those of ALS, many, who are diagnosed as ALS, are
taking the test for lyme disease, hoping to get a reprieve or life
sentence without any possibility of parole. There is another option, a
life sentence with a possibility of parole.
There is a possibility of a cure, however remote, if my hypothesis is
correct. This was the reason that I went to see an infection specialist.
I asked him whether PCR methods were available for checking for
the DNA of Hansen's bacterium. He said PCR methods were for
research only. After checking my elbows (a way of checking a
certain nerve), he said "No Hansen's disease." Finally he offered me
a biopsy but wanted me to accept whatever outcome of the test. I
gathered he meant that I should stop bothering him if the result was
negative.
There are other causes of defective swallowing mechanisms. He
suggested a barium sulphate test. I was not too interested because
this was a problem probably linked to my neurological problems. He
asked me what I would do if I tested negative for Hansen's disease. I
said "I don't know, but if I test negative, it means I am a dead
duck."
After I showed him my reason (my publications in Canadian
Research and the two booklets) for suspecting that ALS, other
neurological diseases, arthritis and other autoimmune diseases may
belong to different parts of the spectrum of Hansen's disease, he
finally admitted that Hansen's disease can cause throat problems
but it usually occurs at a very late stage of the disease. Blood
samples were taken from the ears for checking by the conventional
microscopic method. He told me to go back three weeks later.
The result was negative as I had expected because of the method
known to be not very sensitive. So again I mentioned PCR, but he
gave me the same answer as before. I guessed that was his way of
saying no. I did not know what research entailed and certainly did
not want to step into something more than I could handle. If a
person tests positive by means of the conventional method, the
person will be naturally classified as a patient with Hansen's
disease. If patients, with autoimmune and neurological diseases like
ALS and arthritis, could test positive for Hansen's bacterium by
means of the conventional microscopic method, the bacterium would
have been suspected to be the cause of these diseases, research along
this line would have been started long ago and the problems would
have been solved. My point is that patients with neurological
diseases or autoimmune diseases may test positive for Hansen's
bacterium only by means of PCR or other very sensitive modern
methods.
Section Two: What to do Next?
1. Normally patients, with the kind of symptoms I have, would go to
a neurologist or a rheumatologist. Because I suspected, my problems
might be due to infection, that was why I saw him. He does not see
patients like me in his routine practice. Perhaps I could ask him to
consider this as research in light of the reason above, leading to
PCR or other sensitive modern methods such as GC/MS.
2. There are evidences such as the new findings in the research of
Alzheimer's disease, supporting my hypothesis and conclusion that
infection of Hansen's bacterium can lead to life-threatening diseases
like Alzheimer's disease, Lou Gehrig's disease (ALS or motor
neurone disease) and cancer. So I could sue the Ministry of Health
or OHIP for endangering my life, if it continues to withhold the use
of PCR from me, using whatever excuses. This would cost a lot of
money and I have only a little money in my RRSP, which has
already been allocated for medical research. Suing the Ministry
would certainly ruin the research plan. Besides letters and relevant
documents have already been sent to nine research institutes in
various parts of the world.
3. Diagnosis and treatment abroad would involve too many
unknown factors, such as cost, language, cultural and political
problems.
4. Take my case to the Internet and ask the netizens to be the judge
and juries. This may be the most effective and economical although
not legally binding or ask for help from organizations like
International Coalition for Medical Justice.
Section Three: Etiquette, Demarcation, Procedures, Paradigm
Uphold your rights as a patient but bear in mind that the doctor has
his problems and he has to protect himself against any possible
charge of misconduct. Some Lyme disease specialists have got into
some kind of trouble for treating ALS patients for Lyme disease.
It is very difficult to diagnose any one of these immune-related
diseases, because most patients have several sets of symptoms,
attributable to several diseases and these symptoms are
interchangeable. A few weeks ago, I found my left hand shaking
uncontrollably for about thirty seconds after doing some strenuous
work. This would indicate a probability of Parkinson's disease. I
had a blood sample taken for a thyroid test from my left arm. Next
day, I found a red spot (about 5 centimetres in diameter) under the
skin just several centimetres away from the needle mark. This spot
turned blue, then black and then disappeared. A few days later, I
felt aches and pains all over my body and a similar spot appeared on
my right arm. This seemed to be inflammation of the blood vessels,
internal bleeding or vasculitis. This is consistent with the hypothesis
that these "diseases" belong to different parts of the spectrum of one
disease. This is why it is so difficult and time-consuming to diagnose
one of these "diseases."
It is always unpleasant to prove someone wrong. Pure scientists
propose new hypotheses and have to defend their hypotheses. It is
their job but it is always very embarrassing. Pure scientists are
trained to make new rules. Applied scientists, like medical doctors,
are taught to follow the rules. Disputes among applied scientists
over the rules often involve lives and properties. We need rules to
guard against abuses but it will not be conducive to innovation, if it
is too restrictive.
I suspect that the medical bureaucracy wants to limit the use of PCR
methods for detection of Hansen's bacterium because many may test
positive, including those who are not sick. Based on my recollection,
a paper (reference not recorded, for reason will be obvious later)
described a PCR method, yielding a result of 76% positive among
the population on a south sea island. The authors of the paper
rejected the result, considering it too high, even it was in an endemic
area. In light of this, I did not think much of the paper. Now, I
realise that the paper may have reflected the situation accurately,
considering the statistics, observed facts and variation patterns of
various diseases cited in my two booklets and the supplement.
Perhaps the rule should be that no PCR if one is not really sick.
Ching-Chee Chan, Ph.D.
November 27, 2000
A reader's Questions
nk:
1. Will these drugs work on Hansen bacterium & mycoplasma?
2. Is the PCR method for Hansen's bacterium a blood or skin test?
Reply:
1. I presume you were referring to dapsone, rifampin and
clofazimine (in future, please cite the title of the article concerned).
Yes, these antibiotics work on Hansen's bacterium. There may be
new antibiotics more powerful than these available now. I do not
know about mycoplasmas.
2. Some PCR methods can detect the DNA of Hansen's bacterium in
blood and tissue (skin or muscle) samples.
I am having problems getting PCR tests because of the medical
bureaucracy as you can see above.
Ching-Chee Chan, Ph.D. November 2, 2000
Questions from a reader
mi: You wrote the following in response to an ALS being wrongfully
diagnosed.
"If B burgdorferi is treated as intercurrent infection, Lyme disease
and ALS may be different parts of the same spectrum of one disease.
"
It is possible that my father has LYME instead of ALS, but we do
not know for sure yet.
What is your expertise in the subject and would you mind if I e-mailed or called you with a few questions?
reply:
I am a physical chemist, applying principles of chemistry to
medicine. This is why I can figure out medical problems in a
different way. From 1987 to 1989, I published three letters,
proposing a new hypothesis in Canadian Research. The letters are
reproduced on line at
http://webhome.idirect.com/~egretinc/newhypo.html
In 1992, I published a booklet (self-publication) entitled "An
Alternative Approach to AIDS and Related Problems."
In 1995, a manuscript of mine, proposing an ENL mechanism for
AIDS, was accepted by a peer-reviewed AIDS journal for
publication but it was not published as promised because it was
deemed to be too controversial. The paper was subsequently
published in 1996 as Chapter 2 in a booklet (self-publication),
entitled "An Alternative Approach to AIDS and Related Problems:
Book 2." Shortened versions of these two booklets are available free
on line at
http://webhome.idirect.com/~egretinc/shortver.html
http://webhome.idirect.com/~egretinc/neurodis.html
http://webhome.idirect.com/~egretinc/alz.html
You are welcome to e-mail me. I shall try my best to answer your
questions.
Sincerely yours
Ching-Chee Chan, Ph.D.
December 21, 2000
Questions from the same reader mi: From reading your material, it
seems as though a wide range of symptoms can be attributed to
something triggering the body's immune system to over react to this
bacterium. Depending on where they are reacting to, the symptoms
can be incredibly diverse.
The obvious next step for my dad is the PCR test.
Now for the QUESTION:
I have Ankylosing Spondylitis (AS). I am 36 and have had it at least
since I was 18. The symptoms (sacroiliac joints calcifying) came
about 1 year after a summer spent with what we thought was
Mononucleosis (although we never were convinced of the diagnosis,
and neither were the doctors.) Although the calcification progresses
up my spine, I have kept many of the symptoms in check by a
rigorous exercise program.
So the Questions:
1. Have you linked your theory specifically to Ankylosing
Spondylitis?
2. I am convinced that the exercise (perhaps the hormones released
during the exercise?) have helped my AS. Do you have any opinion
on the subject?
Thanks so much for taking the time to correspond.
PS, I noticed you were from the Toronto area. I live in Rochester
NY which is only a few hour drive away. Do you give any talks or
seminars up there that I might be able to attend?
Reply:
1. No, not specifically. I correlated my hypothesis with the data of a
group of thirty diseases (musculo-skeletal and connective tissue), in
which AS is one (see the booklet, Chapter 2, Table 2.1. A 710-739).
2. Yes, it gets your adrenaline pumping. Adrenaline can reduce
inflammation. Gentle exercise is OK. Overdoing it may lead to stress
which may cause a compromised immune system to overreact,
resulting in more inflammation.
I do not give talks or seminars at the moment, perhaps in the future,
if there is a need.
C. C. Chan, Ph.D.
December 28, 2000
A question from a reader vr:
Hi - I found your post to the Harvard BB on neuropathy about a
possible bacterial connection. You mention "PCR methods" to
detect it. Could you tell me how this is done? Thanks,
Reply:
Hi!
If a blood sample, skin or muscle tissue sample of the patient
contains a bacterium which does not grow and multiply in vitro, the
chance of detecting this bacterium is almost zero. The bacterium can
be broken down into molecules. The DNA molecules characteristic
of this bacterium can be multiplied chemically by means of PCR
(polymerase chain reaction) methods similar to a photoelectron
multiplier in electronics. Starting with one molecule:
1 times 2 = 2
2 times 2 = 4
4 times 2 = 8
8 times 2 =16
Again and again, depending on how many times the process is
repeated. When there are enough number of these DNA molecules,
they can be detected by sensitive instruments. If you need more
practical details about the operation of PCR methods, you need to
consult an expert, working in this field.
For other related subjects, please check my web page at URL
http://webhome.idirect.com/~egretinc/index.html
Ching-Chee Chan, Ph.D.
December 30, 2000
A letter of mine, published by the Toronto Star on Friday,
December 8, 2000 on page A 33, reproduced here below:
Disease may be treatable
Re. "Dying MD teaches other how to live"
December 2.
I am 65 and I have symptoms similar to those of ALS (amyotrophic
lateral sclerosis or Lou Gehrig's disease). Instead of going to a
neurologist, I went to an infection specialist, demanding tests by
means of PCR (polymerase chain reaction) methods. He said PCR
was for research. All results of tests by means of conventional
methods were negative. I asked for PCR methods again. He gave me
the same answer as before.
We need rules to guard against abuses, but if the rules are too
restrictive, it will not be conducive to innovation. I am not giving up
although I am much older than Dr. Barry Smith, who was featured
in the story. I will ask the infection specialist to consider my case as
research and ask for PCR tests again. If I am successful, there may
be a way out of ALS, and I shall share my idea and experience with
those in the same predicament.
Ching-Chee Chan
Toronto
At some ALS web boards, I noted some postings that some ALS
patients said they felt much better in the afternoon. I had noticed I
felt awful when I got up and felt better soon after lunch (I do not eat
breakfast). Now I try to shorten this period by putting on extra
clothing as soon as I get up. Switch on the oven with the door
opened to raise the room temperature quickly, have a cup of hot tea
and do some light work such as washing dishes or just move around.
Make sure my body is warm enough before doing exercise. All these
activities get my adrenaline pumping. Adrenaline reduces
inflammation and keeping warm reduces the chance of injuring my
muscle and joints. Mental activities also help get adrenaline flowing.
Now I hardly notice the problem.
I used to stretch my legs and my body without causing any cramp or
muscle spasm while awakening until the spring of 1999. The pains, I
experienced, seemed to have trained my subconscious mind to stop
doing that. I still experience pain in my legs during the daytime,
feeling some leg muscle "detaching" from other muscle or bone and
"moving" into a different position, if I do not sleep well the night
before.
I have regained most of my physical strength, but I do not know
when the next attack is coming. The things, I do, can only alleviate
my problem for the time being. To solve my problem, I still need to
use the PCR methods. I am going to show a copy of the letter above
to the infection specialist. The people, who are suffering from ALS
and have read the letter, will expect some results or news of
progress from me. The message is that I am not the only one
involved. Other people also expect a solution.
If I manage to get PCR tests and the results are positive, I need to
ponder whether to be treated and with what drugs. If the cure is
worse than the disease, I would rather live with the disease. The
motto is that if the disease is not too serious, it is better not to treat it
because all drugs have side effects and some of these can cause
serious damages. On the other hand, if the disease would likely lead
to asthma, vausculitis or malignant transformation, the risk due to
side effects may have to be accepted with careful monitoring. The
decision would have to be made when the time comes.
Ching-Chee Chan, Ph.D.
January 16, 2001
A New Development
In September, last year, the Toronto Star published my letter about
the HIV hypothesis. The mass media used to regard it as a proven
theory. This indicates a shift in position. In February, the FDA
issued guidelines regarding AIDS drugs, postponing the use of these
drugs in treatment of AIDS patients because of its side-effects, for
details see The Trend. ABC, 20/20 taped a programme last year
about Christine Maggiore of Alive and Well, a HIV/AIDS dissident.
The programme was finally shown last Friday. A flurry of dissident
discussions started at ABC and Yahoo Web boards. Perhaps this is a
small crack in the solid blockade of dissident news by the mass
media.
The latest research findings about Alzheimer's, Crohn's diseases are
consistent with my work. Professor Paul W. Ewald, based on
evolution, wrote a book "Plague Time," indicating infection as the
cause of chronic diseases, such as Alzheimer's disease, heart disease,
atherosclerosis, cancers and impotence. Professor Ewald and I,
using different methods, came to similar conclusions. For details,
please see Neurological Diseases, High Blood Pressure, Alzheimer's
Disease, Notes and Comment #1.
All these does not prove me correct but it may make my ideas more
credible. I am going to present these to the infectious disease
specialist and see what he says. Doctors are subjected to the
disciplines of their association or the college of physicians. The
problems with Lyme disease doctors south of the border are
certainly on their mind.
Of course, there is another reason that I need to see him urgently,
because my problem has taken a turn for the worse. In the spring,
my neurological problem got worse. In the summer, the neurological
problem almost disappeared but the inflammation got worse.
During the heat wave my left eye started bleeding. I also got a
swelling lymph node. When the autumn arrives, the neurological
problems are expected to return as usual. No wonder people living
in the Tropics do not get Parkinson's disease or ALS.
Ching-Chee Chan, Ph.D.
August 31, 2001
Readers are welcome to e-mail me to discuss relevant problems.