Sorting tokyojazzsite.com out for James and helped Nick with problem getting vegetokyo.com to work…  bobarnoldproductions.com is on the list after tokyojazzsite, and then it’s full steam ahead with pebbledashing tokyo with my cv as my japanese should be good enough by then to work in a web company in Tokyo… Can’t wait!!!

According to an old story, a lord of ancient China once asked his physician, a member of a family of healers, which of them was the most skilled in the art.

The physician, whose reputation was such that his name became synonymous with medical science in China, replied, “My eldest brother sees the spirit of sickness and removes it before it takes shape, so his name does not get out of the house.

“My elder brother cures sickness when it is still extremely minute, so his name does not get out of the neighborhood.

“As for me, I puncture veins, prescribe potions, and massage skin, so from time to time my name gets out and is heard among the lords.”

When I tentatively broached the topic of a possible relationship between food and Behcet’s, my “famous” Japanese doc said:

There is no evidence of any such link. And there are many theories as to the cause of it but none of them are substantiated.

Now, if this were not Witha that he was talking to then perhaps the person in the seat would have been discouraged. Suffice to say, I quickly changed tack and then just agreed with everything he said so I could get the flock out of there…

Fact of the matter being, I told him there was research and therefore evidence. < that’ll be a full stop there folks!!

On mentioning that I had experienced diarrhoea, a feeling of nausea… he pretty much instantly dismissed my concerns as having nothing to do with colchicine (the medicine/poison I’m taking!) He obviously disagrees with wikipedia…

I didn’t bother mentioning my aching kidneys and the sore throats that I’ve been having recently…

So…

“As for me, I puncture veins, prescribe potions, and massage skin, so from time to time my name gets out and is heard among the lords.”

I’ll be in need of his eldest brother me thinks!!!

Wish me luck!

Thanks for the info. Our experience is indeed limited - to the one patient that you saw on our site. However, research has indicated that Behcet’s and rheumatoid arthritis are both related to and quite probably caused by food allergies. One such research article is linked on the bottom of our Behcet’s page: http://centerforfoodallergies.com/Behcet.htm and other articles are available on the arthritis page ( http://centerforfoodallergies.com/arthritis.htm) and on the Innate Health Foundation research page at http://www.innatehealthfoundation.org/5_c.htm. Dr. Wangen is speaking on arthritis this month.

Do let me know how things go with your physician. Hopefully he or she is aware of the research and has had some experience with food allergy testing that actually measures antibody binding.

Please contact me if you need further assistance from us.

Thomas

***

Many thanks, Thomas.

I will indeed let you know how things go.

At the moment, colchicine has given my copious amounts of wind and very painful piles… I don’t know which ones are worse the behcet’s symptoms or the colchicine side effects! You wouldn’t happen to know of any natural remedies for piles, would you?

I’ve heard that sleep is very important for behcet’s, by the way, and I think that this was demonstrated when I burnt the candles at both ends, last night and this morning, and subsequently ran out of steam and felt absolutely terrible this afternoon.

Anyway, thanks again for all the information; you have been a great help.

Best wishes,
Martyn

***

Dear Martyn,

I am sorry you are feeling so poorly. Hopefully you will find and treat the cause of your symptoms and be able to stop taking such harsh medication. Stress (lack of sleep, for example) has a tendancy of exacerbating any immune system challenge. Get lots of sleep.

I look forward to hearing how things go with your doctor.

Thomas

OK, so I haven’t conquered it yet, but now I know what has been wrong with me for the last x number of years I can get my teeth into conquering the bugger!!!  I’ve even started growing a goatee again, which will be shorn when I spend 3 months without:

• mouth ulcers
• sore joints/arthritis
• lack of concentration
• extreme exhaustion
• problems with hearing or balance
• changes of personality
• erythema nodosum
• being on colchicine

The first thing I’ve done since discovering that the disparate symptoms were not disparate at all but related to my body’s immune system’s somewhat odd response to my body’s blood vessels is review the online literature.

Suffice to say, most of it is pretty bleak: “behcet’s is incurable,” “behcet’s will make you blind” etc… One institute, however, seemed pretty positive and so I sent them an email:

Hi,

I am from the UK but recently moved back to Japan where I was diagnosed with Behcet’s syndrome.

After 6 long and painful years, to finally have someone acknowledge that, “Yes, there is something wrong with you” was great.  I was right all along, I shouldn’t constantly have mouth ulcers, painful joints, and feel tired, and I’m not just a lazy whinger either!  What a moment!  But then he prescribed me Colchicine, and a cursory look on wikipedia told me all I needed to know: “Colchicine is a highly poisonous natural product”  Nice!!  I don’t really want to be on that stuff for the next 40 years…

Having seen your Behcet’s sufferer’s video I am very happy.  I was in the process of eliminating milk products from my diet anyway.  With the new knowledge that all of my previous symptoms were linked, I did a timeline and found that when I was in Japan from 1997-2001 I was full of life and hardly drank milk because I didn’t like the smell of over-pasteurised Japanese milk!  On returning to the UK I took up from where I had left off and drank copious amounts every day.  My symptoms got progressively worse, I remember now that they got even worse when I started drinking tea and coffee from one of my former company’s drinks vending machines…  In fact, looking back, I seem to have been addicted to the white stuff!!   In addition, I recently (due to the high temperatures in Japan) took to eating icecream as soon as I came home.  Within hours, my concentration would diminish and I would be exhausted.

I was wondering, therefore, what sort of food allergy tests should I ask the Japanese doctor to carry out?  Is there anything else you could suggest I do to alleviate the pain in my joints, mouth ulcers, tiredness?  I’ve recently started drinking my own “ginger water” concoction which seems to help with the mouth ulcers.

I look forward to hearing from you.  Many thanks for the encouraging video by the way.

Kind regards,
Martyn

The following day I got this:

Dear Martyn,

Thanks for your interest in the IBS Treatment Center.  I am sorry to hear that you are having a hard time with Behcet’s.  But I am glad that you found our video.  Did you see it on YouTube or on our website?

Our experience with Behcet’s is limited, but as you saw, very promising.  The food allergy testing that may be helpful to you is ELISA-method testing performed by a competant lab.  Unfortunately this testing is only available from a few labs in the world.  One is here in Seattle.  Interpretation of the results and the development of an effective treatment plan require a physician to have experience.

Should you at any point decide to visit Seattle we would be more than happy to work with you.  Both legal and moral reasons prevent us from attempting to treat patients that we have not had the opportunity to examine.

We routinely have patients travel from distant locations (across the country and around the world) to our clinic and have found that we can effectively perform initial evaluation in a single visit and conduct follow- up visits over internet phone (skype).  Thus if you will be in the Seattle area, we can schedule an appointment for you and address your concerns in a successful manner.  If you need any help making hotel reservations or other travel accommodations, let me know.

Your first visit at the IBS Treatment Center will be focused on understanding all your symptoms, your history, and any previous medical testing that you can provide.  The doctor will meet with you for at least 35 minutes, not the usual 3 to 5 minutes of most medical facilities.  During this visit the doctor will be able to carefully listen to you to understand your situation and answer any questions you have.  Then he can recommend testing that will provide new and valuable information to uncover the cause of your symptoms.  You can choose a package of testing if, as is often the case, one aligns well with your needs.  You should budget about an hour and a half for the visit, including parking, intake, visit, check-out, and sample collection.  Then you may return home.  Your follow up visits will be conducted by internet phone(www.skype.com).  Lab results typically take 3-4 weeks to arrive. Once the results are in, we provide you with a copy and the doctor explains, in depth, what they mean and how you can take action to address what is found.

If you haven’t already, be sure to read our insurance issues page, our price menu, and our page for out-of-towners.  The links to the first two of those are under the ‘About Us’ menu on the website homepage.
Price menu:  http://www.ibstreatmentcenter.com/6_d.htm
Insurance Issues:  http://www.ibstreatmentcenter.com/6_e.htm
The Out of Town page is linked on the homepage or can be found here: http://www.ibstreatmentcenter.com/oot.htm

If you have any other questions or would like to schedule an appointment, please feel free to email me or call our office at (206)264-1111 or 1-888-546-6283 (888-5INNATE).

Thomas

And so I replied with this:

Hi Thomas,

Many thanks for your quick response.

I did a search on google, and then click, click, click, there she was…  On your website, not youtube.

You mention that your experience with Behcet’s is limited, I was wondering if you could let me know the the number of patients you have dealt with and how many you have “cured”.

My current Japanese physician is apparently “famous” in the field of Behcet’s.   I will mention the ELISA-method testing and your institute to him when I next meet him and see what his reaction is.  If he knows of the test and suggests I go down that route then I will do so in Japan.  If he suggests that it is not relevant then I will definitely look into coming over to see you guys at some point in the not too distant future.

After a browse through some online journals, it appears that Japanese and Celtic Caucasians suffer with BD in different ways (the Japanese with the eyes; the Celtic Caucasians with the Gastrointestinal involvement; why my joints are mainly affected is a mystery to me).  Anyway, I will also mention this to him and see what he says.

Many thanks again for the positive news.  I’ll let you know how I get on with my “famous” doc…

Kind regards,
Martyn

If my Japanese doc doesn’t get me an ELISA test then I’m either off to another doc, or I’m off to Seattle!

Anyway folks, I’ll hopefully be able to write more now that I’m poisoning myself and am therefore able to concentrate…

Take care,

M

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Keiko-chan (uncle Masa’s mother) came out onto her balcony and we had a nice chat in Japanese. After that, I got my teddy and took her outside. When I got outside, I saw a spider so decided to come back inside to eat breakfast. My breakfast was delicious.

On the way to the shop, it was quiet; the only noise was the twittering of the birds and the crunching of dry leaves underfoot as I ran…

…to be continued

The phoenix can fly only when it’s feathers are grown.

With our thoughts, we make the world.

The nature of monkey was irrepressible.