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Monday, August 08, 2005

An Updated Health Bulletin

As some of you know, around a month after my prostate surgery, I started suffering from some form of rash. Dermatologists and doctors continued to treat me with what (even they admitted later) were sheer guesstimates. Had they confessed their inability to diagnose matters, I may have been able to proceed to India, or even the West: the sum total spent on wrong medication and also lost by not working would probably be a similar amount - with much less strain.

The rash took various shapes and sizes and spread rapidly to the entire body, with itching and irritation that are impossible to describe. I would not wish them on anyone, even extremists of the ilk of Bush and Osama (who, for someone brought up on Indian movie plots, could well seem to be twins separated at birth). The lack of sleep that resulted almost drove me insane (though many would say that that condition existed prior to this ailment). A dermatologist abroad who was sent pictures of parts of my body sent me a one-word reply: Horrid! (It was not accompanied by any suggestions on the medication.)

I was sent in for yet another biopsy (with the accompanying unbearable suspense for my family and friends). It took the Aga Khan Lab almost 2 weeks to get back with a diagnosis that, according to the tribe of doctors I was seeing, meant nothing. It just stated: Drug Induced Intolerance.

Most doctors started looking at medication received from pre-surgery to that point in time and said none of the medicines used seemed to offer specific reasons to suspect it. One doctor categorically suspected Amaryl2 (he had said this earlier), a medicine used to control blood-sugar levels during surgery, since I am slightly diabetic (although not insulin dependent). No one else agreed. And certainly not the doctor who had prescribed it. To give you an idea of how confusing second opinions can be, the prescribing doctor had used this on several patients and never experienced this, while the suspecting doctor said it looked like a classic case of Amaryl2 reaction!!!

The condition got to the point where 24/7 itching and subsequent lack of sleep threw my blood-sugar levels out of control and placed even greater stress (even worse for diabetes and skin conditions). Friends and family kept advising me to see other doctors, including a quack homeopath, a phrase which may sound redundant to those who, like me, do not believe in this form of therapy. No one provided even the slightest clue. And, to be honest, the homeopath did not even look half-intelligent. He listened to my tale of woe intermittently, between conversations that were already alternating between a friend on the phone and a mafiosi looking character who had dropped in and walked into his consultation room while he was supposedly examining me. He then called up another friend, since he could not 'remember' what the name of the medicine he was to give me was. Risky!

A friend and well-known dermatologist (who had been the first to see me and been unable to get to the root of the problem) returned from a trip abroad and called to see me again. At her clinic she showed me - on her laptop screen - a series of pictures that resembled very strongly the condition my skin was in. She had found a CD-ROM of skin rash images and, through this wonder of ICT, diagnosed me as having developed (although no reason for the development has yet surfaced) a condition known as dermatitis herpetotoformis (which means: not herpes but something that only looks similar!) which had made me "gluten intolerant". This, despite the fact that a test (known as G6PD) had eliminated this possibility, perhaps due to the readings being inaccurate as a result of the variety of medicines taken earlier.

I was then put on a single tablet of Dapsone per day (along with various creams primarily to soothe the skin and a couple of antihistamines to reduce itching) and voila! The tablet has proved to be remarkable. In less than a week one could see/feel the improvement, and now, 2 weeks later, while the condition needs improvement in certain areas (particularly the shin) the body is all but entirely clear of marks, lesions, scabs. The fear of not knowing precisely what is wrong or what caused it - accompanied by a dread of relapse - persists.

Until this happened to me, like many others I have spoken to since, I was unaware of gluten intolerance. Now I have learnt (Thank you, Google!) that this is a condition that can remain for an extended period in some, even life-long in others, and be short-lived in many if brought on as a reaction to drugs. I hope I am in the latter group, since the ailment all but stops you from eating most things you'd like to eat or drink (all forms of bread, for example; and wine. If Khayyam had suffered from this, he'd only have been left with 'Thou' ). Of the few things it does permit, I am already marked as unfit for most due to my diabetic condition. If I were a strong believer, I'd have accepted this as divine retribution for some innoccuous, harmless act, like fantasizing about Angelina Jolie. But, if that were true, half of the world's population would be suffering from this condition.

While, in the West much gluten-free stuff (including breads) and sugar-free everything is available at health stores and larger supermarkets, our countries do not provide such easy access (except for the 'sugar-free sugar' I saw advertised in a Lahore daily). The very dear Jehan Ara came to the rescue, as she always does!!! She found a few items in one of the exclusive shops in Karachi, and - though expensive - they have alleviated some of the tension associated with the terribly bland and limited meals I have had to put up with in the past two weeks. Although I must confess that the cookies she brought feel and taste like high-quality cardboard.

One of the purposes of making you read all this is to be aware of this phenomenon. In the past week I have discovered 4 people among my friends or their families, who have had this condition. And two of the 4 had it a month after surgery! Both surgeries were performed abroad, in Canada and the USA. And one was for hernia, while the other was for something much minor. Rather worrying!!! Are some of us, because of our dietary habits (or bad hospital conditions - a problem that is spread worldwide) getting more susceptible to this? Only time and research will tell. One of the 4, incidentally, has had it from birth (she is 31 now) and lives in the UK where she does have access to food but has not been able to get rid of the condition. And, I believe, she was only diagnosed after years.

As for me, I am off to France for a week on a holiday, invited by someone I respect greatly and feel close ties to: Ambassador Madanjeet Singh. Also, from Nice, I hope to be able to come back with a few gluten-free edibles (notice how my mind keeps going back to food?). Sitting by the sea will also improve my eyesight (the nude beach is a fair distance away!)

On my return I intend to travel to Delhi, where the dermatology institute is considered excellent, and see if certain tests (unavailable in Pakistan) can provide some clues and long-term help. While seemingly on the road to recovery, there are reasons for me to suspect that a few of the lesions, which look different from the rest, could provide nastier surprises in the long run. I am keeping my fingers crescented (keeping them crossed seems risky in these days of the Mullah Military Alliance in Pakistan, since it would be considered as emulating the beliefs of Crosstianity). I am wondering, too, if an experiment with Ayurvedic medicine could provide help. Any opinions on this will be welcome.

The trip to India will be cheaper by far than trying to do this in the West, and the stay a lot easier - many friends there have volunteered to put me up. I can survive on Idli and Dossa, too :~) ... If the stay has to be long, I hope to be able to spend the free time in furthering regional ties through interaction with school or college children or by writing in the popular press (read Tehelka!)

For those of you who are inquisitive or wish to know for any other reason (provided you are not too squeamish … or not perverted) I can email a picture or two of what I was going through. I have not put them on my blog for aesthetic reasons.

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1 Comments:

Blogger insiya said...

thanks for the update. i was about to 'request' for it.

i always judged people by their hand-writings and hence, most - if not all - doctors are stoopid.

May all the people in this world have friends like, Jehan Ara. Amen.

Bring back stories, pictures and a good looking French on your way back from France. :)

Let's go out for dinner - before R leaves.

10 August, 2005 10:12

 

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