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

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Sat, Dec 25 2004
Christmas Day

Well, I made it, just. I was doing better, until I picked up a cold or such. So another week of no.10, and I started taking Echinacea when I had the cold to improve my immune system. Amazingly it seemed to work a treat, so I may take it more continuously in future. My PDA was also delivered back earlier in the week by the CF nurse, and the Christmas cards I finally sent out on Tuesday arrived yesterday.

So, Christmas Day: my appetite is back, my sputum is thinner and clearer and I have more energy. But I still get tired, and there is a bundle of rugs from a relative sitting in my rooms generating further dust. I am being careful not to push myself too hard still, until things come back to normal. Mostly though the cough is reactive (from dust, presumably) rather than bubbling.

Finally, I have been reading a 1995 article from Scientific American, which gave me an incredibly clear insight into why and how CF causes the problems it does. I then spoke to a friend working in the field, who pointed out that the research has moved on quite a lot from that. She has promised me that she will point me to relevant articles when they emerge (although I fear many will be too scientific for me). For now, she has told me to look up "circumin".

Merry Christmas everybody.


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Thu, Dec 16 2004

The herbs have been doing their trick, but I made the appointment so I went. He drained lots and lots of heat out (although he says that if anything there is less heat there than last week) and I have spent the afternoon coughing up stuff he freed. I took the afternoon off work at his clear suggestion, and I am glad I did so because now I am free to do physio while I have the energy. Ahhh, energy: I am so glad to see you again!

I am having a port flush this afternoon - in my current state I actually took up their offer of coming to the house - and I will send home my PDA for the E-San study. I have been getting more and more error messages, and the doctor started complaining that I was not doing the study every night. In fact the problem of not doing it nightly must be widespread because he even got an article about it in the local CF newsletter.

Incidently, I used my steadily increasing energy yesterday and today to install a few missing programs and to finally copy all the fonts from my old computer to the new. It required three trips with a 64MB flash drive to copy them across! I must also say that Thunderbird rocks: it has all the great features of Outlook Express with none of the drawbacks and extra perks as well. I can now check my home email, work email and newsgroups all in the same program.

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Tue, Dec 14 2004
Off ill - ninja virus again

The ninja virus struck again - thick, discoloured sputum, tiredness, but no increase in diabetes. I am taking no.6 and the new no.10 as diagnosed by the acupuncturist and have another appointment this week. However, with effort I finally tidied my floor last night so I could hoover. Wow, I must have slept so much better and I feel better. I probably need to dust today as well, but it is amazing what dust can do. Now I just need to make sure that a) it stays hoovered and b) I haven't given space for my pseudomonas to grow.

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Fri, Dec 10 2004
A diagnosis

I had a particularly useful visit to the acupuncturist yesterday. It turns out that none of my ideas were correct other than that I do not know what is going on. Despite the low and stable blood sugars, there was significant heat in my lungs. The thought is that it remains from the "ninja" virus of last week, and the rumours about the bug suggest that it has a long recurring lifecycle. However, heat is treated the same way regardless of the cause.

The treatment left me feeling tired (or brought my general tiredness to the fore) and I slept in until after 11 o'clock today, but I do feel much better. I will continue to take no.6 and no.3 until it is all gone. I am sure part of the betterness is knowing what the problem is!

Btw, if any of you want to know if there is chinese herbal practitioner near you, I urge you to check out the website of The Register for Chinese Herbal Medicine. I think many of the practitioners are also acupuncturists but there is a link from the site to the British Acupuncture Council (as well as other alternative therapy sites).

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Mon, Dec 06 2004
Yes, it was a bug

With some early nights, the bug mostly went by Saturday, at which point I was left with a chest full of sputum to clear out. Good colour, still thick. I have continued taking no.2/3 which stopped the infection coming and removed the heat. But I am still more tired than I should be, and still producing.

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Thu, Dec 02 2004
Still tired

I have remained incredibly tired. I have had to cancel a couple of commitments and have been little more than a zombie at work on a couple of days. I finally took a strong mixture (will 5 teaspoons) of no.2 and no.3, and I seem better today, although there is a way to go yet. However, my sputum seems more thick thank infected, in spite of being green at times and there is a strong theory of a Winter bug rather than anything CF related, and I am pretty certain the cold, damp weather has not helped.

Still, I am too tired to make a strong analysis so I will keep taking different herbs until something gets a result. For instance, after taking the spleen tonics, my sputum went, and remains, much thinner. All comparative, of course.

(If this sounds like drivel, I blame the tiredness!)

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Posted at:Mon, Jul 04 2005 11 PM