COPD WEB SITE NEWS, INCLUDING SOUND ADVICE ON A NUMBER OF TOPICS AND DETAILS OF NEW UPDATES.
BREAKING NEWS
NEW 21st August
Pauline Elliott sent us this from Sky News
A CURE FOR THE COMMON COLD ON THE WAY?
Scientists in Australia are hopeful that they have come up with a pill that will put many of us out of our misery when suffering from the winter hazard. Trials with British volunteers started this week and, if successful, the pill could be on the market within five years. Tests on the drug, known as BTA 798, have already shown that it can kill large quantities of the cold virus within hours. The next thing the scientists want to find out is whether it can actually prevent them starting. The drug is being tested by Australian company Biota Holdings, which also developed the flu treatment Relenza. If successful, the drug is expected to be directed initially towards high-risk groups - those who are vulnerable to infection, such as those with asthma, bronchitis and cystic fibrosis. (his) highest hopes for it long term is in the treatment of people suffering from asthma and chronic obstructive lung diseases such as bronchitis and emphysema. Professor Johnston - who specializes in studying these conditions - says this group of people would benefit most from prevention rather than cure.
NEW 16th August
Pauline Elliott sent us this American website. The BLVR peoject looks very interesting.
Have a look http://www.aeristherapeutics.com/
NEW 10th August
LEICESTER, England, Aug. 4 -- Creatine supplements added to exercise failed to give any benefits to COPD patients, researchers here said. NEW (4 AUG)
- Explain to interested patients that exercise training has been shown to improve health status and quality of life for patients with COPD.
- Explain that this study found that adding creatine supplements, which increase muscle mass in healthy people, failed to give any extra benefit when given to COPD patients in an exercise program.
Among COPD patients on an exercise program, those who also took creatine supplements did no better on measures of exercise capacity and muscle performance than those who received placebo, reported Sarah J. Deacon, M.D., of Glenfield Hospital, and colleagues, in the Aug. 1 issue of the American Journal of Respiratory and Critical Care Medicine.
Patients with COPD often lose muscle mass and strength, which may contribute to the early mortality frequently seen in the disease, the researchers said.
http://www.medpagetoday.com/Pulmonary/SmokingCOPD/tb/10406
Low dose naltrexone and copd
The following two case histories arrived recently from a gentleman called Zahavi (E-mail address : Zahavi100@planet.nl) who lives in Holland. They have come several times so I am not sure whether they are part of a sales pitch of some sort. The accounts appear to be genuine and an e-mail address is given by one patient, but we publish the texts with no guarantees whatsoever as to the claims. David
Celia Danks says :
"Where do I start with my 'story', it could take quite a while, but I shall try and condense it as much as possible. My name is Celia and I live in Scotland, I am in my 50's, so not exactly a spring chick - but hey - working on it!!May of 2006 gave me shocking news, that I had a chest full of cancerous lymph nodes, tears and grief were the most prevalent, grief for the life I may not have, and for those I would leave behind. The primary tumour was never found, but I am 'treated' as 'lung' and thus recieved palliative care only, eight doses of chemo, followed by 12 doses of radiation, it was expected I had 6 - 12 months of living to do. I also have/had the following - mild lupus, IBS (so bad sometimes I dare not go out) , Diverticula, COPD, thyroid problems (had partial thyroidectomy years ago) osteo arthritis, high blood pressure, high cholestrol, chronic fatigue.After my conventional treatment, the Onc was amazed when I went into remission, he assured me this would not last, that I had less than 1% of making it. Not for me to accept that! Treatment did not seem to be forthcoming after that initial work, it was a case of watch and wait, I will not wait, I will not watch, I went in search for anything that might help me. Of course I went on the usual supplements, but knew this was not enough, changed my diet, but not radically, red meat I could not eat, and my diet consists mainly of eggs and fish - plus veg and fruit. I have also discovered a penchant for the darkest chocolate I can find, at least 85 - 86% cocoa. I read about B17 and went to one of Philip Day's lectures, I started taking this almost every day in kernel form. In January 2007 I had a very bad excacerbation of COPD which landed me in hospital, I came out on 02 and steroids.I then learned about Iscador, a derivitive of the Misteltoe, and fortunately as there is a homeopathic hospital not too far from me I got a referral and now use Iscador series two, on a regular basis. Still I searched the net, and lo and behold came across LDN after never hearing of it before, it seemed like a miracle, I had to have it, I fought for it and got it on the NHS so it costs me nothing. I got my first bottle but did not dare take it, I was on steroids regularly for my chest, and had to have my hip replaced and was thus on pain killers. Each night I looked at the bottle, and each night I thought - shall it be now? As soon as my hip pain began to diminish, and I could come off the steroids, I counted the days - and then on day ten I took my first LDN! Don't know why, but I was frightened of it....My first feelings on LDN were as though I was on a bit of a high, I felt great, I had some disturbed nights, not too many strange dreams, and have worked out by now when it is best for me to take it. This is usually about 9 - 30 pm, and as I take sleepers an hour later this seems to be working for me. At the time of writing - (1st June 2008) I have been on LDN for about eight months.Very soon after staring the LDN I found I did not need the 02 for my COPD, I only need to nebulise maybe once a day - if that, and today I walked the furthest I have been able to for what seems ages, it was a miracle, still can't believe I did it! One thing I noticed early on was that I was not spending half my life in the loo..... I had been referred for another sigmoidoscopy but cancelled it, to this day I have never had the bowel problem like I did before LDN.... My energy began to return, I had had chronic fatigue for many years, but slowly I am getting more energetic, I was fit enough to have a hip replacement about six months ago - oh the relief!! My last X ray shows no signs of the cancer which was supposed to have killed me over a year ago, my blood pressure is now normal after being too high for a few years, I had to come off BP medications, my lupus does not bother me at all.. I have a good appetite and am gaining weight, I feel quite good all things considered, and I recommend LDN to everyone"!Celia, in Scotland.
| COPD patient gets more air with LDN My name is Jos van der Heijden and I live in Uden in the Netherlands. I am a truck driver and I am 53 years old. I have been suffering from COPD for 30 years and my lung volume is 40%. I am also a heart patient. My lung specialist treats me in the conventional way and my situation deteriorates every year. He told me that he hopes that my muscles will not weaken but he doesn't do anything to prevent that from happening. With all the cortisone that I get through the inhalers my muscles and my heart became weak. Until 2006 I had many times pneumonia. In 2006 my wife started to take supplements and I began to take a good multi vitamin supplement , fish oil, co-enzyme Q10 and my general health improved. I was almost without pneumonia but I didn't have so much air. I had to use 3 types of inhalers and I used them quite often. With the help of my friend we tried some more supplements but nothing helped except cordyceps in time of stress. I heard about LDN from my friend who suffers from auto immune diseases and I tried to get a prescription from my GP and from my lung specialist but they were not ready to write it. A year ago I went to Dr. Therese Hertoghe in Brussels and she checked my hormones and my thyroid. She gave me DHEA, testosterone and Armour Thyroid. She also gave me a diet and was ready to learn about LDN. She promised to send a prescription if she found that LDN was good for me. My health improved with the hormones and the diet and I needed less medicines for high blood pressure, but I didn't get more air. A month after the visit to Dr. Hertoghe she sent the prescription and I started with 4,5 mg LDN at night. I didn't have sleeping problems, only a bit dizziness when I stood up too quickly, but this was also getting better after some time. After a few days I noticed that I didn't need the inhaler first thing in the morning, I saw that I didn't need so much the inhaler over the day. I felt very good and saw that I am not so tired anymore. Some 2 weeks after the beginning of the use of LDN I felt tired and I didn't understand why. My GP didn't have the answer, but my friend explained that it was because I got less cortisone now, "your adrenals are tired". We solved it with cytozyme AD. After 4 weeks on LDN I noticed that I began to cough up materialfrom my lungs that looked different from the stuff that I used to cough up. Maybe something is loosening up inside my lungs? I read in the LDN-group about a woman who had the same experience. At the moment I feel good and after many years having heard that there is nothing that can be done for COPD, I see that LDN can help with this sickness. In a short time I go to my lung specialist and I am curious to see if something happened to my lung volume. I would like to hear what my lung specialist will say. End of Low dose naltrexone and copd cases |
NEW (5 AUG) WEATHER
WE WILL NOT BE GIVING ANY MORE FORECASTS BECAUSE THEY ARE MORE EASILY SEEN ON TV. ANYWAY, WE CANNOT POSSIBLY COVER THE WHOLE OF THE UK
THE MAIN DANGER NOW IS FROM GETTING WET AND INFECTIONS. TRY TO KEEP AWAY FROM PEOPLE WITH COLDS ETC. IF YOU ARE ON YOUR OWN AND FEEL VERY DEPRESSED AT THIS TIME OF YEAR HAVE A CHAT WITH THE SAMARITANS http://www.samaritans.org OR PHONE 08547 909090.
JOHN SAID "THEY ARE BRILLIANT _ I KNOW BECAUSE THEY HAVE HELPED ME SO MUCH IN THE PAST".
OR WRITE TO US IF YOU PREFER.
NEWS (OLDISH)
John received this letter from a female sufferer concerning her treatment in hospital. We have witheld her true name and the hospital, but John assured us that it is genuine.
Dear John, while laying in my bed last night my lungs decided to start shutting down. I went on the neb and oxygen but with no response. I called 999 blue lighted to my a/e & taken straight to resus. Sats 89 so a doctor put me straight on oxygen but it felt wrong. It was so fierce he was giving me 6 litres. After 5mins my head felt as if it was going to explode and I then vomited everywhere. He gave me medication to stop the vomiting and morphine for the pain in the ribs. (Editor = she broke a number of ribs a few weeks ago). I sat there fighting for breath -sats now 83 waiting nebs. Then he tried 12 times to get my blood gases back up. I’m blue by this time. After half an hour my sats shot up to 100. I’ve never had that he then moved me to a side acute ward. i was given no meds except 30mg of pred. My blood gas was 88 when the dr came at 9. The respiratory consultant was shouting at the nurses as to why hadn’t I had any medication and he wanted to admit me. By this time i refused explaining that I’m not stopping in when i can have the same treatment at home without risking hospital bugs. He had a wobbler and walked away. I came home took all my meds got my sats up to 94 on antibiotics. Should i make a complaint?
John said Yes - and the hospital concerned is considering the case
IF YOU HAVE HAD A BAD EXPERIENCE IN HOSPITAL WE SHOULD LIKE TO HEAR FROM YOU
John convinced Stagecoach buses in Devon to allow oxygen users on to their buses. Prior to last week they were not so if you live in Devon or are passing through with ambulatory oxygen please congratulate Stagecoach for this change. You cannot bring large cylinders - only ambulatory (small ones)!! National Express also allow passengers to use oxygen but John had nothing to do with that!! There is a newspaper article on this under travel!
John said : The benefits for 2008/9 have been updated. Claim them if you can. Remember that Gordon Brown has abolished the 10% tax rate so if you have a pension on top of your own pension or benefits you may be worse off. But there are tax credits etc so make sure you claim them. Personally because I am not looking after any children and I'm not over 65 but have a few small pensions then I will be worse off by about £200 a year. Disgraceful. Since this was written a £600 increase in the basic tax free rate is promised in the Autumn and will be backdated. In spite of this some people will be worse off.
For busy health professionals there is now a list of contents on that page so that you can check for new entries.
Reference for RESPIMAT http://www.respimat.com/com/homepage.jsp
Terry ordered one from his GP and found that the delivery of Spiriva was so much improved that he no longer needs so much oxygen. The Respimat delivery system was approved by NICE for the NHS in October 2007. John said "I have had it a month now and find it brilliant. So I'll move this piece over to the treatments section soon".
WE APOLOGISE FOR SOMEB BROKEN LINKS. THE SITE IS BEING ALTERED/EXPANDED AND THIS HAPPENS. IF LINK IS BROKEN, DOUBLE CLICK ON TOPIC ABOVE.
NEW WEB SITE OF INTEREST. IT IS FROM USA BUT WRITTEN BY A DAUGHTER IN MEMORY OF HER FATHER WHO DIED FROM COPD/EMPHYSEMA. TAKE A LOOK.
www.loveyourlungsbreatheforlife.com
A NEW WEB SITE HAS JUST BEEN LAUNCHED _ NHS CHOICES - if you click on this reference below
http://www.nhs.uk/conditions/chronic-obstructive-pulmonary-disease/Pages/Questionstoaskpage.aspx
You will be taken to the site on COPD. If you would like to listen to the radio broadcast on this page you will hear John & other distinguished guests. The site in general is designed to help anyone with COPD & the interviews make it very personal.
The progress of my own medical condition page is to be found on PAGE 1. Also see asthma/copd for an in-depth account of STEVE AND DAVID battling with this illness . STEVE'S Site is www.baycitywalker.com - Check it out for September 14 2007 he actually refers to John! STEVE IS AN AMAZING CHAP - READ ABOUT HIS ADVENTURES. AND NOW HIS LATEST PIECE ON INTUBATION (A NEW PAGE).
WWW.COPDFRIENDSHIPS.CO.UK - The companion site is working well but we need more members to communicate with each other - either carers or COPD sufferers and if you join this site we will send you a DVD on exercise.(see below). MORE PEOPLE ARE JOINING EVERY WEEK
IF YOU HAVE ANY OXYGEN PROBLEMS THIS SITE www.oxywalk.org
IS THE BEST ONE THAT WE KNOW OF IN THE UK.
IT HAS BEEN POINTED OUT TO US THAT WE SHOULD NOT USE THE TERM "MIXER" WHEN REFERRING TO VEGETABLE JUICES. IT HAS BEEN CHANGED TO BLENDER!?
A NEW PAGE HAS BEEN ADDED FOR COPD HEALTH PROFESSIONALS and PRO-ACTIVE PATIENTS & CARERS. The only difference on this page is that the text may be more academic and less easy to understand in some cases. Please note that it is being expanded with new information on the NSF for COPD by the BLF for professionals.
Download or read the summer issue from "Everything Respiratory" - some good articles amongst the adverts. and John contributed http://www.er-mag.com. A good magazine.
SMOKING BAN
FROM JULY 1st 2007 SMOKING IS BANNED IN MANY PUBLIC SPACES - INCLUDING PUBS ETC AND BUS STOPS AND EVEN PARKS. THIS IS YOUR OPPORTUNITY TO GIVE UP SMOKING. 50% OF SMOKERS DIE FROM SMOKING. JOIN THE MILLIONS WHO ARE TRYING TO GIVE UP. A NEW DRUG SHOULD BE AVAILABLE IN JULY 2007 - VARENICLINE (CHAMPIX). THIS IS NOT A NICOTENE REPLACEMENT TREATMENT (AS DESCRIBED IN SMOKING). IT REDUCES THE CRAVING AND WITHDRAWAL SYMPTOMS. CONSULT YOUR GP. THERE ARE SOME REPORTS OF SIDE EFFECTS!!
THIS BAN HAS LED, JOHN BELIEVED, TO ABOUT 7% DROP IN CIGARETTE SALES - AT LEAST IN THE SHORT TERM.
SEE WHAT YOU CAN SAVE BY GIVING UP SMOKING ON THE SMOKING PAGE.
If you have a cough and are worried about it there is a new web site www.coughclinic.org.uk. This is run by the NHS and will offer you a diagnosis & may save you a visit to your GP.
This web site is receiving between 300 and 500 visitors a day.
THESE ARE THE DVD's YOU WILL RECEIVE IF YOU JOIN THE FRIENDSHIP SITE SEE ABOVE
IF you are wanting more information go to FINDING OUT and BOOKS AND LINKS. We get many letters from carers who want to know what to expect when their loved ones are in the so called "end stage". I have descibed some of those things on the prognosis page. However, it is difficult to describe end stage copd since many patients live on for years with appalling lung function.
For example although John's FEV1 had now dropped to 15% and he was on oxygen 24/7 he did not consider himself at death's door!!! "If I was in my 80s, with a very low BM1 and heart disease and on 5 litres a minute of oxygen (per minute) and showing signs of pneumonia I might. But even so nobody can predict within a week of someone's death".
If one was caring for someone with a recognised heart problem or just elderly, say with COPD, one should be aware of the following signs of a stroke.
THERE ARE 3 STEPS - REMEMBER THE FIRST THREE LETTERS...S.T.R S
S- ASK THE INDIVIDUAL TO SMILE
T- ASK THE PERSON TO SPEAK A SIMPLE SENTENCE COHERENTLY i.e it is sunny today.
R- ASK HIM OR HER TO RAISE BOTH ARMS.
ALSO YOU CAN ASK THE PERSON TO "STICK" OUT THEIR TONGUE. IF IT IS CROOKED GOING TO ONE SIDE OR THE OTHER THIS IS ALSO A SIGN OF A STROKE
FAILURE IN ANY ONE OF THESE TESTS THEN YOU MUST CALL 999 AT ONCE describing the symptoms. A NEUROLOGIST CAN REVERSE THE DAMAGE OF A STROKE IF HE CAN RECEIVE THE PATIENT WITHIN 3 HOURS.
MAJOR HEALTH TOPIC - aimed at professionals and patients.
On June 18th The Times reported that 1 in 4 Primary care Trusts were failing targets on cleanliness and tackling superbug infections. In 2006 there were 55,681 cases of C. difficile in patients in England (up 8%) and between October and December 1,540 cases of MRSA (down 7% on previous quarter) - so that means nearly 6000 cases per annum compared to NONE in the Netherlands.
C. difficile can cause diarrhoea, ranging from a mild disturbance to a very severe illness with ulceration and bleeding from the colon (colitis) and, at worst, perforation of the intestine leading to peritonitis. It can be fatal. Generally, it is only able to do this when the normal, healthy intestinal bacteria have been killed off by antibiotics. When not held back by the normal bacteria, it multiplies in the intestine and produces two toxins (A and B) that damage the cells lining the intestine. The result is diarrhoea.
The term MRSA or methicillin resistant Staphylococcus aureus is used to describe those examples of this organism that are resistant to commonly used antibiotics. Methicillin was an antibiotic used many years ago to treat patients with Staphylococcus aureus infections. It is now no longer used except as a means of identifying this particular type of antibiotic resistance. Individuals can become carriers of MRSA in the same way that they can become a carrier of ordinary Staphylococcus aureus which is by physical contact with the organism. If the organism is on the skin then it can be passed around by physical contact. If the organism is in the nose or is associated with the lungs rather than the skin then it may be passed around by droplet spread from the mouth and nose. A significant death rate is associated with thiis disease amongst the ill and elderly patients in hospital.
HOW DO HOSPITALS PREVENT THESE INFECTIONS?
Here are some basic guides. All patients and visitors should be tested by a simple swab. Is your local hospital doing this? Nurses should throw away gloves after dealing with each patient or use the hand gel for MRSA & wash their hands with soap for C.Difficile. Ideally, anybody with MRSA should be placed in an isolation room but few hospitals have these. Stainless steel surfaces and door handles should be replaced with copper which kills off MRSA after a few minutes.
Ideally floors and door should be washed thoroughly, not just swept.