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Advice for severe asthma and 1st consultant appt?


I'm new to the forum but have had asthma for about 10 years as an adult. I have been very ill for the past 3 years with lyme disease and another infection called Bartonella, after an insect bite in Southern England. I have always been able to manage my asthma with becotide inhalers at 100mcg - 200mcg dose per day and use salbutamol reliever whenever I need it for flare ups. Even during my illness I have been able to control my asthma until recently. I took antibiotics long term for 2 years to treat my illness. I started getting a tight chest and worse asthma with some of the antibiotics so I stopped the antibiotic treatment. I increased becotide to 400mcg per day to keep my asthma under control. I am now taking herbs instead - Samento, banderol to treat the lyme.

However in mid February, 3 and a half months ago, I caught the flu from my young son which led to a chest infection and bad cough. My chest was really bad and I went to A&E for pneumonia symptoms. The Dr said the Xray showed my lungs had a bacterial infection and gave me antibiotics. A few weeks later I was back in A&E but another Dr re-looked at my Xray and said it was actually clear and it was probably a viral infection. My cough gradually went but my chest didn't improve. I also had daily night sweats and lost a stone in weight. My GP tested my sputum for Tuberculosis and another chest Xray which didn't show anything. My blood tests were fine. My GP increased my Becotide inhaler to 800mcg per day but it still isn't helping. I am using my reliever about 6 times a day some days. My chest is so tight and I have a lot of mucous build up. I haven't been able to go out for months. I've tried chinese acupuncture, herbs, cupping which used to work but isn't helping now. My GP referred me urgently to Guys hospital but I still have another 3 weeks to wait for an appointment.

I am wondering if this is just my asthma needing to recover after a bad chest infection? But I am not improving on a higher dose inhaler, so I am worried I have something terribly wrong with my lungs. Everyday is a nightmare as I can't breathe and waiting 3 weeks seems unbearable on top of my illness.

Should I increase my inhalers and what is the maximum dose I can take with Becotide? My GP said 1000mcg starts giving side effects from the steroids which isn't good as steroids are not good for lyme disease. What should I prepare myself for my 1st appointment with the specialist at Guys? I have no idea what they will do, a CT scan?

Sorry for the long story but I hope anyone can offer any advice or experiences. I'd be very grateful for any responses.

1 Reply

Hiya and welcome :-)

Sorry you've been having such a rubbish time with illness and asthma playing up etc!

Just want to say, don't despair, there are things that they can do to help bring your asthma under better control. There are 5 stages of asthma management, from what you're saying it sounds as though you're currently on step 2 albeit on a high dose of ICS. From what my gp said earlier this year as I was experiencing lots of issues with mine is that he prefers to give a combination inhaler with a long acting salbutamol type medication on lower dose of ICS if he can get away with it before increasing them, so that could be an option, there is also a tablet called montelukast which can help if hit asthma is made worse by allergies. I am not a doctor, so can't advise, but can share experiences :-)

Your gp sounds quite proactive though in referring you, as most people get referred at step 4/5. I got my referral at step 5, when my gp said he was not able to go any further with my meds without me seeing a consultant. My cons is lovely and approachable. Your apt will come round very quickly :-) just take a load of questions to be answered, pf and symptom diaries, meds info etc.

I'd also see if you could see your gp to talk about whether there are any other add on therapies he could add to help in the mean time.

Hope you start to improve soon :-)


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