Picks-at-Flies's Cystic Fibrosis Blog

I suffer from the genetic condition Cystic Fibrosis. I generally keep myself comparatively well with Western antibiotics (and steroids, and vitamins and...), Osteopathy (generally to tackle tightness on the lungs) and Acupuncture. Unfortunately I tend to lose track of how I was behaving this time last year so I have started this blog to help me keep track of things. You are also welcome to look. For more on Cystic Fibrosis see the CF Trust website http://www.cftrust.org.uk.

Articles: Chinese medicine, CF and Me :=: Another year on :=: Top ten ways of staying healthy
Reference: Description of herbs :=: List of herbs :=: About this blog


August 2006
July 2006
June 2006
May 2006
April 2006
March 2006
February 2006
January 2006

December 2005
November 2005
October 2005
September 2005
August 2005
July 2005
June 2005
May 2005
April 2005
March 2005
February 2005
January 2005

December 2004
November 2004
October 2004
September 2004
August 2004
July 2004
June 2004
May 2004
April 2004
March 2004


> pwcf.com
A "fan" site created by People With CF. Highly recommended.

> CF Trust
Official site for this excellent British charity. Includes extremely well populated forums - highly recommended.

> What is Cystic Fibrosis?
A pictorial guide to the key parts of CF and to living with it.

> Cystic Fibrosis Medicine
A somewhat thin internation site for CF patients and specialists.

Other blogs

> Breath of Life
Another CF blog, rather more complete than mine!

> Cystic Fibrosis and Me: A Personal Journey
(Clockwatcher sadly passed away 2006; the site seemed to follow him)

I seem to have lost my links to other CF blogs. If you want yours added, give me an email.

Visit the CF Trust

Blog software

WWW This blog
Fri, Aug 20 2004

CF, Chinese medicine and me

This article was originally featured in CF Talk 5 (Summer 2004) and has been reproduced here with the response with permission.

See also the official response.

About eighteen months ago I finally went to my first session of acupuncture for my CF, after much prompting from one of my friends. It turns out the person who was recommended to me also was trained in using Chinese herbal treatment. Since then I have learned a new vocabulary for discussing my illnesses.

Most of the work has focused on dealing with my lungs. My acupuncturist (mouthful, isn’t it?) and I have experimented to see what treatment is useful, not useful and most effective at different stages of infection. The infections on my lungs seem to vary between:

  • Cold phlegm
  • Hot phlegm
  • Fire Poison

While direct translations between the Chinese terms and Western medicine are not possible, these stages can be considered as no/dormant infection, infection present and time-for-IVs.

The chinese herbs come in a number of different forms. The weakest but easiest form is a tablet, of which I have three which I regularly take at different stages of infection. I have also taken tinctures - liquid concoctions that are generally diluted in boiled water - and boiled up herbs, a laborious process but one which produces a strong solution. The first herb tablet I take, for when I am truly well, is a formula that partially removes cold phlegm but mainly is a “tonic” that builds up strength in my lungs and spleen (see below). The second, mainly tackles a build-up of cold phlegm but contains some tonic. The third has some effect on hot phlegm.

The latest formula I am trying is a tincture targeting hot phlegm that seems to thin my sputum, an effect that seems similar to DNAse (although I am still taking that as well). It seems to work well at the moment, and should help me to shift the Winter build-up.

In addition to the chest, much work has been done to target the “spleen”. The chinese spleen includes much of what Western medicine calls the stomach, guts and, most relevant to me, the pancreas. Since starting the treatment, my digestion has improved (I have gone from taking slowly increasing amounts of creon, to a steady and more effective amount); and the improvement (not cure!) of my diabetes may be due to the acupuncture and herbs, although the signs of this are less clear.

There are a few notes of caution regarding acupuncture and the chinese herbs.

  • These treatments should not replace any of your normal treatment or medication. Carry on with IVs as usual. Should your health improve, like mine, then your consultant may feel that some of your normal medication can be reduced.
  • We felt it was necessary to stop taking the chinese herbs when taking IVs due to the possibilities of unknown clashes between the two treatments.
  • The herbal formulae can be quite powerful and have detrimental effects if used inappropriately: when trying a new formula, take it in small doses until you are happy with its effect; if you take the herbs regularly it is important that you are aware of your own body so that you know when to change formulae. Similarly, heavy acupuncture can make you very tired.

Whilst there are no conclusive results as to the merits of my acupuncture and herb treatment, I have no doubt that it has had a positive effect on my health. The treatment has worked alongside the usual collection of pills and nebulisers, physiotherapy, regular exercise, good food as well as irregular cranial osteopathy (to open up my lungs and stretch my diaphragm, both of which get very tight at times), but I could list the benefits as: clearer lungs, more time between IVs, improved digestion, reduced effect of diabetes and more energy.

Even the first couple of treatments enabled (and inspired) me to start exercising in a way which I had not done for five years. It has been a cooperative process that has taken many months to generate a reliable strategy, and the process continues as we find more about how the herbs interact with my CF-related problems and as my health changes.

The acupuncture and chinese herbs together cost me about £40 a month, which I would say is a small price to pay for having my life back.

My acupuncturist wishes to add the following point of caution:

As there is no single “correct” formula for treating CF, it is vital that you obtain herbs from a fully qualified herbalist and avoid standard formulas available from health food outlets. Herbalists should be members of the Register of Chinese Herbal Medicine and have the title RCHM after their name. For more information and details of a practitioner local to you contact:

    Register of Chines Herbal Medicine
    Office 5
    Ferndale Business Centre
    1 Exeter Street
    Norwich NR2 4QB
    Tel: 01603 623994
    Web: www.rchm.co.uk

Aidan Bowes is currently working part-time on a library helpdesk. He has not had IVs for six months.

See also the official response.