DOES IT WORK, or DOESN'T IT??? Warning
*** Included in these pages are also the details of the surgical
procedures performed in the diagnostics of my problem and the surgery
to correct it. *** As many of you know, I was recently hospitalised
and during that time had numerous tests from those of observation,
monitoring, normal labs, as well as very invasive, to the eventful
surgery. I am still currently in recovery, but thus far without
Behcets Flaring. The following is the detailed experiences of those
days just prior to entering the hospital and those days therein.
Approximately 2 weeks prior to August 25, 2000, I began experiencing
chest pains. At first they were of short duration and seemed to
occur with no particular pattern. However, as the next few days
passed, they became more prevalent and of much longer duration and
intensity. A pattern also began to develop, one in which the pains
would begin after only mild exertion or activity and would continue
until reclining and remaining still and quite for at least 45 minutes
to an hour, whereby the pains would subside, until, I resumed activity.
There was no pattern of occurrence as specific to any given time
of day nor any specific activity whether strenuous or not. The pains
were felt throughout the chest cavity and was such that it felt
both my heart and lungs were being very tightly squeezed to the
possible point of expulsion from my chest. The pains were more descriptive
of dull and throbbing rather than sharp and protruding. Accompanying
was shortness of breath and some light-headedness. The pains were
actually more upsetting, unsettling, scary, and annoying than intense
Being accustomed to pain as most all persons with Behcets and Autoimmune
Disorders are, I did not contact my doctor at first, as I wanted
to give the pain a chance to resolve on its own, as we all know
may or may not happen when a "new" symptom, ache, or pain first
appears. When the chest pains did not subside after the 2 weeks
and were showing signs of progression, I called my Primary Care
Physician, who immediately began running tests. First, there were
EKG's, followed by physical examination, lab work, and x-rays. A
rush was put on the lab and tests results and I saw her again on
Friday morning, whereby I was sent that afternoon for admission
to the hospital. Further tests ensued, which included addition EKG's
and other electronic heart tests, ultrasounds as well as further
blood tests and x-rays. Results of all those were not providing
the answers needed as to "why" I was experiencing the chest pains
and symptoms I was having.
Friday afternoon, my doctor called in a Cardiologist for further
testing and determination of the cause for the chest pains and symptoms.
I was immediately scheduled for both heart and lung catheterisations
(hereby referred to as "caths"). Stress tests and the normal routine
tests were not even considered an option due to the added stresses
that would have been imposed on my body that could play key roles
in Behcets Flares. Those were being avoided as much as possible.
Problems were enough without additional Behcets stimulants. The
Cardiologist stated he felt confident, given the symptoms I was
experiencing, there was blockage somewhere either in my heart or
my lungs. I was given the option of being awake, semiconscious,
or asleep during the caths. I chose to remain fully awake and alert
during both of those procedures. These tests are of a very serious
nature and are not routinely performed nor used except in cases
where their benefits outweigh the risks especially for the Behcets
patient. Although my following accounting of these tests are humorous,
please enjoy the humour but remain aware that they are also risky
and very invasive to the body. For those persons having never experienced
such tests as the catheterisations and have questions as to how
these tests were performed, I am going to detail those here for
you. If you have weak stomachs or reservations about how procedures
of such nature are performed, please skip this paragraph and proceed
to the end.
In preparation for these tests, I was taken to an operating room
set aside for these procedures as they must be performed in a completely
sterile environment with full OR procedures, scrubs, masks, etc.
The point of entry into my body for these 2 tests was to be a return
artery direct to my heart and a large return vein to my lungs, with
each entered into in the groin. In further preparation for these
tests, and in anticipation of my going straight into heart or lung
surgery, large double IV lines (or also known as "Central" IV lines)
were put into the return artery of my arm. The Cardiologist felt
there was blockage that was going to need immediate removal and
the caths were to reveal exactly where the blockages were located.
At the site of entry in the groin, first the surrounding area was
bathed in betadine and all hair from the surrounding area removed.
Next a special sheet or drape with open areas was spread over the
necessary area of skin to allow access to the artery and vein and
a local anaesthetic was applied to numb the surrounding tissues
of the points of entries. The anaesthetic was only a very short
duration of a little stinging, the actual entries into both the
artery and vein were a little pain but mostly of just a feeling
of a pressure and no further anaesthesia was needed. In the Operating
Room there were screens much like that of computer monitors which
showed the progression of the cath (the needle like instrument used)
as it travelled through the artery and then the vein to their respective
destinations of heart and lungs. The first of them being the heart.
Hold on to your seat---this is where the humour begins, if you are
still with me and can fathom there being any humour in all this.
I am lying there fully immobile on the table in this OR, and all
of a sudden my Cardiologist begins muttering notes and statements
to one of the attendants, nurses and whoever was in there, "This
just does not look right." ---------- "I don't believe what I am
seeing."------------ "This is very unusual."-----------------"This
is just not normal."----------------"This is just not right here."
---------Now after about the 5th or so time of these expressions,
mind you I am fully awake and aware of what all is happening, I
am "not" ready to "hit" the Panic Button, I am ready to SMASH IT!~!!!
And, by this point in time, I am now scared out of my wits almost,
so much so that all I could manage to get out of my mouth were the
words, "Pppllleeeease explain!! The doctor looked over at me and
broke into a big grin and said I am sorry, I forgot that were we
still awake which very rarely ever happens and apologised for his
statements that upset me but then began to explain them. He replied
that "what" he was seeing was indeed very unusual and almost unbelievable.
He said he could not find one single tiny speck of cholesterol floating
in my artery nor inside any of the chambers of my heart. He said
there simply and conclusively were "none" there. There were no narrowness,
no scars, nothing but totally clean and healthy tissues. Then he
proceeded to my lungs with the cath there, first the right lung,
then the left. He proceeded and gave his notes again as he had done
with the heart cath and announced that there were no blockages or
clots, no scars, no damaged tissues, only 100% functioning healthy
lungs. He then concluded and the points of entry for the caths were
properly closed and bandaged. The Central IV lines were removed
and I was prepped for return to my room.
The closure of those caths, for those wondering about the procedure,
were of an hour duration in which I remained in the OR and to which
pressure was applied to the sites of entry until bleeding had stopped.
Then a large sterile bandage was applied with pressure and secured
to the leg and surrounding skin. I was to remain still and flat
on my back for the following 8 hours to prevent any further bleeding.
Upon return to my room, a sandbag for weight was also placed to
rest atop my leg and groin where the cath incisions were to help
further prevent any bleeding and those also remained for about the
next 5 hours. The entry points were both very small and about the
size of a pencil or pen and about 1/2 inch in distance from each
other. There was some soreness and a little pain afterward, but
not enough that I needed any pain reliever or sedation for.
My Cardiologist visited me again later Saturday evening and these
were his words in summation of both procedures. "Your heart and
lungs are just not those typical of a chronologically 50 year old
person. It just does not get any better at any age than what I saw
in yours this afternoon. I understand you have been on a special
diet, and that being the case, don't stop whatever this diet is,
as it is ]certainly working to the maximum for you. It just does
not get any better than this!" I asked him then at what age then
does the condition of my heart and lungs usually change and subside
as he saw them, and does disease such as Behcets and family history
play roles in this? His reply was a very definite "YES" those are
very important factors for consideration and the usual age in which
signs and damages first appear are the "mid twenties". He again
reiterated that "he" had no doubt that my diet had played a major
role in his findings. He also instructed and said he was strongly
recommending that I continue it TFN. He filed his report as being,
"Cause of chest pains are not heart nor lung related."
My Primary Care Physician, then proceeded with other tests and ordered
ultrasounds of my gallbladder, pancreas, and liver. The findings
there revealed problem only with the gallbladder. Pancreas and Liver
were both completely normal. The problem with the gallbladder first
appeared as 2 polyps rather than gallstones. As most everyone knows,
polyps may or may not be cancerous or are capable of becoming so.
There were no questions or debate that those must be removed, with
the most uncomplicated and simple way of their removal which was
that of the gallbladder itself.
This now being the course of action and treatment, my Rheumatologist,
who had already been called into the scenario, was now very actively
involved to take any and all steps possible to prevent a Behcets
Flare. For this, he prescribe NO further body invasions of any kind
(needle sticks or otherwise) until I was received into Pre-op for
the actual surgery. At that point a regular IV using the smallest
permissible needle for this surgical procedure was applied and a
high dosage of my allergy med given IV followed by a prednisone
boost, before the procedure actually began and I was anaesthetised
For the actual surgical removal of my gallbladder, a Surgeon, also
familiar with Behcets was brought in. Then the procedure in which
my gallbladder was performed. Following the surgery and just prior
to being returned to my room, a second prednisone boosts was given
through the IV, and again 8 hours later a 3rd prednisone boost.
Those thus far have held Behcets Flaring at bay. No further prednisone
or other meds for Behcets have been prescribed or needed as of yet.
Pathology reports of the gallbladder and its 2 "suspect contents"
revealed that they were indeed 2 very large floating or loose stones
within the gallbladder chamber. The content of the stones were found
to have started first as cholesterol but only continued to grow
as calcium. No other spots or specks of cholesterol or beginning
stones were found anywhere within the gallbladder This was too an
unexpected find I am told, as there is almost always other "makings
and beginnings" of other such stones to follow. It is believed that
my diet cleared the cholesterol from my system and prevented any
additional stones from forming.
The surgical procedure itself was performed using the newer Laser-Scopic
Methods. There were 4 small incisions with the 2 larger ones being
each about an inch in length and in the navel and at the bottom
of the breast plate in the centre of the torso. The other 2 smaller
ones were approximately 1/4 and 3/8 in in length each and at the
waist line and to the right side approximately 3 inches apart. Invisible
and self absorbing stitches were used entirely and scaring will
be very minimal if showing at all when completely healed. Pain has
been very little with only 3 dosages thus far even needed, and all
3 of which have been taken at home. Soreness is no more than that
expected. I am able to get up, walk and move about as desired. Sitting
for more than short periods of time are still a little uncomfortable,
but that is improving daily. I am expecting full recovery with short
duration getting there.
With ALL tests results now completed and confirmed and body chemical
levels, not one single test now showed other than "excellent and
normal". This included liver enzymes, cholesterol, diabetes, SED,
Hemo and blood counts----ALL were reading now completely normal.
I was discharged from the hospital Wednesday evening with what was
once "self disciplined diet and vitamin regimen/protocol" to now
"Doctor Ordered" return and application of the Sulphur Diet and
Vitamin Supplements", and not by only one doctor, but "both" my
Primary Care Physician and my Rheumatologist. They both say they
are not just exactly sure "how" this diet accomplished the results
that all the tests revealed, but they say they are certain it had
a very definite impact as there are previous medical tests and records
in my files that prove and validate this. They have also encouraged
me to write and publish my journal and research on this subject
and say they will endorse it as their findings have revealed the
effects of it.
So---"Does It Work, Or Doesn't It?"
The "Theory" of this is that "yes, it does work". Obviously there
still needs to be a lot of research and documentation for this,
and hopefully that will come in time. The question of "how" does
it work and "what" enables these results are still somewhat of mystery,
but, we believe that by reducing the body's "allergen antagonists"
as in my particular case with sulphur allergy, my body was able
to concentrate its efforts in processing my foods with the nutrient's
and vitamins that I consumed and utilising them more effectively
and efficiently. And, whereas, my body thus responded with less
of the "soldier fighting cells" triggered by the allergic reactions
within my body, hence inflammation and Behcets, allowing for many
many areas throughout my body to heal from the previous inflammation
and irritation, as in somewhat of a chain reaction of slowly reducing
those white soldier-fighting "T" cells. By thus reducing those cells
and the inflammation, my body began to function as the body is designed
to do and thereby cleanse and rebuild and rejuvenate and heal itself.
As that process continued, it began to more ably and efficiently
utilise vitamins and nutrients that it had not previously been able
or capable of doing. Over this period of time of these last few
months, my body has been able to totally reset its function and
detoxify itself and function now as the body was designed to do.
There are medical records and documentation's in my files that verify
this. There were heart arrthymias, partial lung functions of both
lungs (one at only about 85 to 90 % and the other at slightly over
50% and both with much scaring from previous bouts with pneumonia's,
repeated respiratory infections and side effects of medications
used to treat Behcets, small and large vein malady's and scars from
inflammation, vasculitis, and phlebitis, varicose veins, as well
as other visible signs and scars resulting from Behcets, irritable
bowel syndrome, and the host of numerous other conditions commonly
seen along with Behcets. Those have all dissipated and no longer
present any problems and visible evidences disappearing entirely.
Strong family history of diabetes and high cholesterol problems.
Any and all signs and indications of these developing are totally
gone. My overall state of health now presents as validated by the
tests just performed in the last few days is "excellent". The overall
effects of the "Sulfur-less Diet" certainly appears to offer much
in my favour and to my personal benefit. As documented by test results,
there have been NO ill effects, undesirable side effects, nor damages
or repercussions thereof nor resulting from its use and application
on a consistent daily basis.
Will the Doctors and Medical Staff initiate further research into
this themselves somehow???? I don't know----perhaps time will tell.
In the meantime, I am recovering without any further complications
from any of the procedures or Behcets Symptoms.
I hope that the details of the medical procedures will help to ease
some anxieties and stress for those of you who at some time in the
future may also experience some of the same things I have just experienced.
So many newer and more advanced ways and methods of doing many things
are vastly improved over what they were even just a couple or so
years ago. If any of you should find yourself facing these procedures
and have any questions, you are welcome to e-mail and ask. I am
"not" a doctor and do not have the knowledge of all the various
procedures that are frequently performed to attain certain results,
but I will share with you the details of my own personal experiences
and hope that it may help to ease some of your stress and fears.
TRIAL OVER PAST FOUR (4) MONTHS
Over the past four months, the sulphur research with the deletion
of sulphur and/or its derivatives via medications, diet, and environmental
factors to the point of as much as has been possible to do, this
reduction of the level of sulphur within my body and its allergic
responses, has enabled me to totally wean off the prednisone as
well as Cellcept and all other meds for Behcets and its symptoms.
I am now termed and classified as being in a state of "full remission".
With that and as indicated, we are "not" referring to a partial
remission, whereby I still have a few mild symptoms or am still
on some "retainer" medication for this. I have regained
a very full and normal lifestyle, and one that will rival anyone
who classifies themselves as "normal" and has no disease/disorder/condition
such as that of Behcets.
Changes and adjustments that I have made during these four months
to the vitamin supplements and /protocol/regimen are as follows:
Vitamin D added in the amount of one 400 IU tablet taken twice daily
with breakfast and dinner respectively for bones and joints to supplement
for the deletion of dairy products from the diet. This also
aids in the rebuilding and strengthening of bones from the ravages
of extended use of the prednisone.
Raw Egg Whites---*Pasteurised Form Only*--- I now take 2 (two) Tbs
(tablespoons) of this just prior to and immediately following "each"
meal. This is without fail to help neutralise the
sulphurs contained within the foods of the meal. These are
readily available at most all grocery outlets in the section with
the eggs and egg substitute products. They are not expensive
and cost on an average of $2 to $2.50 per 16 oz. or pint.
As they are primarily a protein, my hair and nails seem to be benefiting
from this as well. Growth I have never see in either of them
It is not known at present exactly in measurements just how much
nor how little the raw egg whites are capable or neutralising, but
it is known that they do have this property. The pasteurised
raw egg whites may "sound" very unappetising and give one thought
of a horrible nauseous taste, but in truth and reality, these fresh
pasteurised raw egg whites have almost "no" taste at all---only
the ever so slightest of salty. They are "not" slimey
as you characteristically see when breaking a raw egg.
They are really little more than the taste of water.
It is simply more the mental thought of consuming the raw egg
white than anything. But, the effects of doing this
has been nothing but "positive".
By taking the pasteurised raw egg whites before and after each meal
and the Vitamin B-12, which has resulted in a reduction of the sulphur
level throughout my whole body and the full remission I am not in,
I have found that I now can vary the diet to include an "occasional"
meal containing of some of the "forbidden" foods. I do not
venture into eating them everyday, but maybe one of those foods
once or twice a week a few days and meals apart and feel no repercussions
from them. However, there are some of the "forbidden"
foods I still abstain from totally, and those being especially,
"raw" onions, garlic, cabbage-broccoli-cauliflower-brusselsprouts
"raw or cooked", pork--except microwaved well done extra crispy
thin sliced bacon, all lamb, all egg yolks, cheese, tomatoes, oranges,
and pineapples. Those other foods contained on the lists
on the other pages of this article, I do not consider still as "forbidden"
but with an "occasional allowable variance". For those
who so dearly love "onions and garlic" as flavourings and enhances
of other foods, Onions well cooked may be "occasionally" used, and
for more frequent uses and enjoyment of those flavourings, the powders
and salts are the better and more acceptable choices used in moderation.
Garlic in other forms are "not" recommended. Another
food that I also not use very moderately as necessary for good food
dish preparations is milk and margarine (not butter).
I do not indulge in drinking milk as one normally would do, but
a "very occasional" bowl of cereal and milk, small dish of ice cream,
or even a milkshake is now a special treat. I do not do as
much as one of these once per week, but a "very occasional" indulgence
is acceptable. Another favourite of my sons is pizza---that
is now a real treat maybe "once" during a month, with avoidance
of all other "forbidden" foods for at least 2 days both before and
after the pizza. The principle of the whole approach
with both acceptable and forbidden foods is to avoid an intake of
enough sulphur over "any" given length of time, be it one day, two
days, three days or longer, such as to cause "any" significant increase
of the sulphur within the body. It is this increase of sulphur
within the body, when one is allergic or sensitive to it, that causes
the body to react, and in my case, that reaction results in symptoms
For those wondering "how" and the best ways of food preparations
to follow the diet and sulphur reduction and desirous of some
tasty recipes and tips or hints, I am putting together some of those
for your convenience and use. Those will be posted within
the next few days. Until then, please read this page over
a few times and apply it to the lists of foods in this sulphur article
as it hopefully will be of help. For those who have
contacted me about this and questioned "what is" acceptable as the
forbidden lists seem so long and are very depressing when I think
of all those loved and favoured foods being listed on them and then
feeling overwhelmed and depressed that they can never eat them
again, I hope this will be encouraging and let you know that once
the sulphur within the body has been reduced to a minimum, many
of those foods may still be enjoyed occasionally. This
is best thought of and referenced as "not" being negative, but rather,
"very positive" when there is the possibly of regaining a good quality
life and a full remission. Even a remission sustained
and retained by even minimal medication is a vast improvement over
what seems to be the general application for Behcets.
All in all, if this is the "link and cure" for the problems I had
with Behcets, the price I am paying is very "small" for
the "Life" I am now enjoying. The money
spent for the Vitamin Supplements and the Pasteurised Raw Egg
Whites are nominal and much much less than the cost of all
the medications I was on, even with insurance covering the greater
portion of that cost. And I can certainly sacrifice a few "choice
and favoured" foods to live as I am currently doing.
This approach to gaining control over Behcets is no guarantee, but
no other approach, with all the varied medications used thus far,
has been either. As the old saying goes, "nothing is free",
but the price I am paying for a present life "free" of Behcets is
"so small", I have NO complaints!
During the first part of year 2000, and to the present, I have done
extensive research on sulphur/sulphur/sulphite/ sulphate (sulphur
and its derivatives). I have found some rather in-depth
and very interesting information about this and how it affects the
body, in which it is naturally found. However, when
a person is allergic to sulphur, it appears that allergic and sensitivity
to sulphur may very well carry -over into everyday life, including
a sensitivity to that which is found naturally in the body as well
as that ingested in medications and consumed in foods and beverages
Generally we know when our body responds to a high concentrate of
sulphur within a medication, but there are many medications that
do not contain high concentrations and therefore may not show the
violent reactions we commonly see and expect when the body is allergic
and sensitive to it. Another factor in this to consider
is that sulphur being naturally found within the body, we have a
certain amount of perhaps "acquired" tolerance for the sulphur and
its derivatives such that we do not show those reactions outwardly,
but yet have them on-going from within as a constant milder reaction.
Hence, those inward milder reactions resulting in inflammation and
cell damage internally, so symptomatic as that which we see in Behcets
Disease and other Autoimmune Conditions.
Having researched this subject, I found that not only is sulphur
and its derivatives found in numerous, known and unsuspecting medications,
but also naturally in our bodies, naturally in some foods we eat
even daily, but also in Vitamins and Amino Acids consumed daily
in supplement form and in the foods we eat, but also as additives
to our foods primarily as sulphites in the form of preservatives
and enhancers. Is it any wonder that when the body is allergic
and sensitive to sulphur and its derivatives, that the body will
react unfavourably to those sulphurs entering the body regardless
of the source from which it comes. Why should we not
expect the body to respond in some way?
After getting the results of the research that I did, I decided
to put this theory to the test by deleting as much of the sulphur
and its derivatives from my daily intake of all sources containing
them. This includes medications, of which I no longer
take any containing any form of sulphur, diet meaning foods and
beverages, and Vitamin supplements of especially Vitamin B-1 which
is Thiamin and Biotin as well as Zinc known as an immune system
booster. Those vitamins mentioned here are also found
naturally in high quantities in some foods and beverages as well
as additives in most commercially produced and processed foods and
beverages. In this article you will find the listings
of those foods and beverages which contain these sulphurs/sulphites
and zinc in high quantities. Also below you will find
a list of the medications I am currently taking and what dosage
Having put this to the test for nearly a month now, I find there
is a definite connection in the way my body responds, my over-all
health status which has greatly improved, and the way I feel and
in my capabilities to carry out daily routines and functions.
Being allergic to the sulphur and its derivatives as I know that
I am, by deleting this from my daily intake of everything and then
supplementing with other vitamins to balance the daily requirements
of my body and offset the deletion and counteract those sulphurs
that cannot be avoided, there certainly is no detriment to my health
and well-being. Having done this and continuing to do
so, I find much improvement in the Behcets symptoms and conditions
I have had for so long and that have been so very difficult to treat
and control, and am now in the process of weaning off all medications
that are toxic and damaging to the body in side effects with both
short and long term usage. Currently I am in what is
termed "medically induced remission". However, even during
this process of weaning off all those medications prescribed for
the control of the overactive immune system and Behcets, I am able
and thus far successful at doing so without any flaring of Behcets
symptoms. **There will be updates to this article as
necessary to give full report of any and all reactions as it pertains
to this subject of sulphur and its derivatives
All the information of this study and research has been forwarded
to a major research and laboratory team and is currently under further
investigation. Report from that will also be made here at such time
as that become available.
Anyone having questions or desiring to comment on this is invited
to send them to me using the e-mail link provided below.
Topics in this article are:
of Vitamins and Medications
Sulphur--Sulfur--Sulfite --- Naturally Found in Foods
B-1 or Thiamin
of Additional Findings and possible Heritage Link to Silk Route
Menu for one Day