Subscribe to
our mailing list




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 pain.

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.


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 before.

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 of Behcets.

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 some
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 as well.

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 levels.

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:

(b)  Sulphur, Sulfate, Sulfite

(c)  Protocol of Vitamins and Medications

(d)  HIGH Sulphur--Sulfur--Sulfite --- Naturally Found in Foods

(e)  Vitamin B-1 or Thiamin

(f)  Biotin

(g)  Zinc

(h)  Report of Additional Findings and possible Heritage Link to Silk Route

(i)  Sample Menu for one Day

Privacy Statement & Copyright ©2002-3 Behcets Disease Information Resources. All Rights Reserved.