Dirk's and Other Comments

[Guest guest]

One of the best said discussions on why and what we should be doing in

response to these unusual and rare diseases we are " blessed " with.

We have to be active partners in our care, questioning and cautious. We

need to question our doctors and those that suggest " natural " treatments

or alternatives to " traditional " medicine. Dirk mentions that modern

medicine doesn't have all the answers and that is very true. We are

continually learning about better treatments as well as more details

about all diseases and how they progress and the natural history of them

now, with the newer treatments.

In the past these were fatal diseases. Many doctors, as I have mentioned

before, consider PSC as death sentence. It's only in the past 10 or so

years that tx has offered a " cure " . So we need to educate our primary

caregivers who don't know as much as we might know about PSC.

Many of us, and I include myself in this, are too quick at times, to

think that so called natural products are safer and better in some way.

My work for Health Canada and my experiences as a patient have made me

realise that natural products are dangerous for some people and most

have not been tested sufficiently to know if they are safe or effective.

Small uncontrolled studies, especially in diseases like ours that have a

course of pregression and remission of symptoms, are very easy to say

that they may be effective. PSC does not follow a continually

progressive course. If you follow your blood tests over time, without

treatment, they vary greatly. So if you take something that seems to

improve those results, it may not be the " drug " .

As someone mentioned you can be ending up with expensive urine and not

doing yourself any good. As I mentioned with the SAM-e you could be

setting yourself up for major heart problems and no drugs are totally

benign. Nightshade, a natural product is deadly. Foxglove contains a

wonderful chemical that helps people with some heart conditions. But

digoxin can be deadly for others. Health Canada just notified Canadians

that V-King and natural product used as an aphrodisiac contains

sildenafil, the active ingredient of Viagra. This is not mentioned on

the label. Men can end up with permanently damaged equipment if they use

this product as directed. This is tip of the iceberg as these natural

products are not tested or regulated in Canada or the US as regular

medications are. So it's a buyer beware situation.

Despite these provisos, I have tried a number of non-traditional

treatments because I was very frustrated by the current knowledge and

treatments I was offered prior to being diagnosed properly. I tried

accupuncture, homeopathy, naturopathy and others. I think all are safe

and reasonable. However, they all have aspects of them that require

caution. You have to make sure your accupuncturists either uses fresh

needles every time or has a good autoclave to sterilise the needles and

that he/she uses it. Homeopathy is safe as the " medications " are so

dilute they pose little risk. The amount of acohol in a dose is also

minimal.

Good luck .

The best of health to all of us in the new year.

Aubrey