NTM Lung Disease: What Aspergillosis Patients Need to Know

Audience: Patients living with chronic pulmonary aspergillosis (CPA), ABPA, or post-TB lung disease

Part 1: What is NTM Lung Disease?

Nontuberculous mycobacteria (NTM) are environmental organisms related to the tuberculosis (TB) bacteria. Found in soil, household water systems, and plumbing fixtures, NTM can cause chronic lung infections in people with damaged or weakened lungs. Unlike TB, NTM is not contagious.

Common NTM Species in Lung Disease

NTM Species Common in Lung Disease?
Mycobacterium avium complex (MAC) Very common
Mycobacterium abscessus Difficult to treat
Mycobacterium kansasii Resembles TB

NTM thrives in individuals with bronchiectasis, cavities, or chronic inflammation—conditions common in aspergillosis patients.

Part 2: 🌬️ How Do People Get Infected with NTM?

✅ The key source: Environment, not people

NTM are common in:

  • Soil

  • Household water systems

  • Showerheads and taps

  • Hot tubs

  • Natural water (lakes, rivers)

When these bacteria become aerosolised (turned into a fine mist), they can be inhaled — especially during:

  • Showering or bathing

  • Using hot tubs or jacuzzis

  • Gardening or digging in soil

  • Running taps or using power tools that spray water

🫁 Who Is Most at Risk?

While many people breathe in NTM without any illness, infection is more likely if you have:

  • Damaged lungs (e.g. bronchiectasis, COPD, prior TB, CPA)

  • Weakened immunity

  • Genetic conditions like cystic fibrosis

⚠️ NTM Is Not Contagious

  • It does not spread from person to person like tuberculosis.

  • You can’t catch it by sharing a room, hugging, or coughing near someone with NTM lung disease.

Part 3: Why Aspergillosis Patients Are at Risk

  • Structural lung damage (e.g., bronchiectasis, cavities)
  • Frequent use of steroids or antibiotics
  • Impaired mucociliary clearance

These factors make the lungs more susceptible to NTM colonization and infection. Studies show 10–20% of CPA patients may also have NTM.

🧫 Epidemiology

  • Increasing globally, especially in developed countries
  • More common in older adults, particularly slender women over 50
  • Also common in cystic fibrosis, COPD, prior TB

📋 Symptoms

  • Chronic cough
  • Fatigue
  • Weight loss
  • Low-grade fever
  • Night sweats
  • Hemoptysis

🧪 Diagnosis

Requires clinical, radiographic, and microbiologic evidence:

  • Consistent symptoms
  • CT scan showing nodules, cavities, or bronchiectasis
  • Positive cultures: 2 sputum or 1 BAL or biopsy + culture

Part 4: Similar to Aspergillosis

NTM symptoms often mimic CPA, asthma, or bronchitis, leading to delayed diagnosis.

Part 5: 📈 Is It a Recent Threat?

  • ✅ Increasing Incidence: From 2–3/100,000 in 1980s to 15–40+/100,000 today
  • 📍 Hotspots: Southeast US, Japan, Brazil, Australia

🔍 Why Is It Emerging?

  1. Aging population with chronic lung disease
  2. Better detection with CT and cultures
  3. More exposure to plumbing aerosols
  4. Drug resistance (especially M. abscessus)

🚨 Public Health Impact

NTM is under-reported, often missed, and difficult to treat. The burden is rising.

Part 6: 🔎 Why Cases Are Missed

  • Symptoms overlap with COPD, TB, ABPA
  • Mycobacterial cultures not routinely ordered
  • CT scans may be misread or misinterpreted

🩺 Missed Opportunities

"I was told it was just post-viral cough. Three rounds of antibiotics and steroids later, I still felt worse."

📢 Improving Awareness

  • New guidelines by ATS, ERS, IDSA
  • Dedicated NTM/bronchiectasis clinics emerging
  • Multidisciplinary teamwork encouraged

📊 Summary Table - current research

Species Key Drugs Imaging Pattern Trials
MAC Azithro + Ethambutol + Rifampin Nodular / cavitary CONVERT, SPR720
M. kansasii Rifampin + INH + Ethambutol Fibrocavitary Historical
M. abscessus IV Amikacin + Macrolides Bronchiectasis + nodules OPTIMA, NIX-NTM

FAQs

Q: Is NTM contagious?
A: No, NTM is not spread person-to-person like TB.

Q: Can I stop treatment early?
A: Only if your specialist advises, and usually not until your sputum cultures are negative for 12 months.

🛣️ The Patient Journey
Before diagnosis: Confusion and frustration
Diagnosis: Relief mixed with fear
Treatment phase: Long, with side effects
Post-treatment: Ongoing monitoring, lifestyle adjustments

💊 Treatment: What to Expect

NTM treatment is often long-term — typically lasting 12 to 18 months, and in some cases longer. It involves taking several antibiotics at once, depending on the NTM species. The goal is to achieve negative sputum cultures and reduce symptoms while preserving lung function.

Common medications: macrolides (azithromycin or clarithromycin), ethambutol, rifampin, and sometimes injectable antibiotics like amikacin.

Common side effects:

Nausea and vomiting — especially during the first few weeks
Fatigue and loss of appetite — can persist throughout treatment
Hearing loss — from amikacin; often requires audiology monitoring
Vision disturbances — from ethambutol; patients may need regular eye exams
Liver inflammation — elevated liver enzymes from rifampin or clarithromycin
Drug interactions — multiple antibiotics can conflict with other medications

Why persevere? Because untreated or undertreated NTM can lead to worsening lung damage, increased breathlessness, and further infections. Completing treatment can stop disease progression, reduce symptoms, and restore quality of life.

"I was on 13 pills a day at one point. My appetite was gone, and I was constantly exhausted. But I pushed through because I didn’t want to lose any more lung function."
"Even though the side effects were tough, I knew stopping early might mean starting all over again — or worse."

💬 Patient Quotes
"I had never heard of NTM. Suddenly I had to understand sputum cultures, drug combinations, and whether I'd lose my hearing from amikacin."
"I felt like I had the flu every day for a year. People thought I was exaggerating — but this illness is invisible."
"I finished treatment and stayed clear for 6 months. Then the cough came back and it was a different strain. I had to start all over."

 What Patients Can Do
Ask your doctor about NTM if you have chronic cough or CPA flare
Avoid hot tubs, humidifiers, and soil exposure
Use sterile water in nebulizers
Join support groups for shared learning

Resources & Testimonials

✨ Final Thought

NTM lung disease may be a hidden complication for aspergillosis patients. But with early detection, specialist care, and support, you can manage it and protect your lung health.

🔚 Summary

NTM lung infections are a growing challenge for people with chronic lung disease, including those with aspergillosis. In the UK, recent studies suggest a prevalence of around 6–7 per 100,000 in the general population, and nearly 28 per 100,000 among those with chronic respiratory disease. This makes it as common—or more common—than tuberculosis in certain groups. While incidence may have declined in primary care settings, detection has likely shifted to hospitals and specialist clinics due to better awareness and diagnostics.

Though not fast-spreading, NTM infections can be progressive and difficult to treat. Recognising symptoms early, accessing testing, and receiving care from a multidisciplinary team are key to avoiding long-term damage and improving outcomes. Stay informed and proactive — NTM may be rare, but for some, it’s a life-altering diagnosis that needs prompt attention.

by GAtherton

📄 Why Have Asthma Rates Risen Despite Cleaner Air?

It might seem surprising, but even though outdoor air pollution has fallen a lot since the 1970s, asthma is more common today — especially in children. Here's why:

🧼 1. Cleaner Isn’t Always Better for the Immune System

Modern lifestyles mean children are exposed to fewer germs early in life. This can cause the immune system to become over-sensitive, making allergies and asthma more likely. This is called the "hygiene hypothesis."

👩‍⚕️ 2. Better Diagnosis

Asthma is diagnosed much more often now than in the past. In the 1970s, many children with wheezy breathing weren't given a diagnosis. Today, doctors recognise and treat asthma early. That means the numbers look higher — but some of it is due to better awareness.

🏠 3. Indoor Pollution

While outdoor air has improved, indoor air can be a problem:

  • Gas cookers, damp and mould
  • Dust mites and cleaning sprays
  • Less fresh air due to sealed homes These things can all affect breathing and trigger asthma.

🚗 4. Modern Air Pollution Still Affects Us

Pollution from traffic (especially nitrogen dioxide and tiny particles called PM2.5) is still a problem — especially near busy roads. These can irritate lungs and make asthma worse, even at low levels.

⚖️ 5. Lifestyle Factors

Obesity increases the risk of asthma, and more children are now overweight. Children also spend more time indoors and less time being active, which may affect lung health.

🧬 6. Genetics and Early Exposures

Family history matters, and things like antibiotics, pollution, or infections during pregnancy or early life can influence a child’s risk of developing asthma.

✅ Good News

Even though more people have asthma, it’s much better managed today:

  • Inhalers are more effective
  • Fewer people die from asthma
  • Most children and adults with asthma can live full, active lives with the right support

🩺 Has Cleaning Our Air Been Worth It?

Despite the rise in asthma diagnoses, cleaning up the air has been a major public health success:

✔️ Major Benefits:

  • Huge drop in bronchitis, pneumonia, and childhood chest infections
  • Far fewer hospital admissions for acute respiratory illness
  • Respiratory deaths due to coal smoke, sulphur dioxide, and black soot have plummeted
  • Safer air for people with long-term lung conditions like COPD, ABPA, and CPA

🤔 Why Asthma Went Up Anyway:

As the section above explains, asthma is influenced by more than just air pollution:

  • Indoor air, allergens, obesity, early-life exposures, and genetic factors all matter
  • Better detection and survival also increase the number of people living with asthma

🔍 The Bigger Picture:

Even though asthma became more common, the severity of lung disease has dropped for many people thanks to:

  • Better inhalers and treatments
  • Early diagnosis
  • Cleaner air and less exposure to smoke and harmful chemicals

So yes — cleaning the air has been worth it. It’s saved lives and made breathing easier for millions. But like most things in health, it's one part of a much bigger story.

Let your healthcare team know if you have questions — understanding your environment and your own triggers can help you breathe easier, wherever you live.

 

by GAtherton

🏡 Preventing Damp and Condensation in Holiday Homes

A detailed guide for both property owners and guests – working together for a healthier stay

Condensation is the most common cause of damp and mould in UK homes, especially in older or well-insulated properties. For holiday cottages or short-term lets, where different people stay for brief periods, it's essential that both owners and guests understand how to prevent moisture problems.

This guide explains:

  • How owners can set the home up to reduce condensation

  • What guests can do during their stay

  • Why it's a shared responsibility

  • How these steps benefit everyone, especially the most vulnerable

🔧 Part 1: For Property Owners and Holiday Let Managers

Even well-maintained homes can develop damp if moisture builds up faster than it can escape. Here’s how to set up your home for success:

🪟 1. Improve Ventilation in Every Room

  • Fit extractor fans in bathrooms and kitchens. Fans should ideally have:

    • A humidistat (activates automatically above 65–70% humidity)

    • A run-on timer (continues working after lights go off)

  • Keep trickle vents open at all times.

  • Consider Positive Input Ventilation (PIV) for older homes or those with solid walls.

🧱 2. Insulate Cold Surfaces

  • Insulate external or solid walls using breathable materials.

  • Install underfloor heating in bathrooms or damp-prone areas.

  • Use thermal curtains or blinds to help reduce cold zones near windows.

🎨 3. Use Breathable Finishes

  • Choose lime plaster, clay paints, and breathable wall finishes.

  • Avoid vinyl paints and woodchip wallpapers that trap moisture.

  • Leave gaps between furniture and walls to promote airflow.

💨 4. Provide Drying Areas

  • Offer a well-ventilated drying space for coats and laundry.

  • Install a heated towel rail, airing cupboard, or portable dehumidifier.

  • Avoid encouraging radiator drying where possible.

📊 5. Monitor and Educate

  • Use digital hygrometers to keep track of humidity (ideal: 40–60%).

  • Include guest-friendly guidance in welcome materials or visible signage.

  • Ask cleaners to report signs of mould or moisture early.

🧍‍♂️ Part 2: For Holiday Guests and Tenants

Moisture builds up quickly from cooking, bathing, and drying clothes. These small actions can help:

🚿 1. Bathroom Habits

  • Use the extractor fan or open a window after showers or baths.

  • Leave the door shut for 15–30 minutes after use.

  • Hang towels on rails rather than radiators to help them dry evenly.

🍳 2. In the Kitchen

  • Always use the extractor fan when cooking.

  • Use lids on pans and open a window if no fan is available.

  • Wipe down steamy surfaces and windows to stop mould forming.

👕 3. Drying Clothes

  • Use airers or drying racks rather than radiators.

  • Keep a window slightly open while drying indoors.

  • Don’t leave wet items in piles or draped over furniture.

🛏️ 4. Living and Sleeping Areas

  • Keep trickle vents open – they allow constant low-level airflow.

  • Air the home each morning for 5–10 minutes.

  • Don’t push furniture tight against walls – allow some airflow space.

🔄 Part 3: Shared Responsibility – Why Both Parties Matter

Owner Sets Up Guest Helps By
Installing good ventilation Using fans and vents
Providing drying facilities Drying clothes responsibly
Monitoring humidity Opening windows regularly
Choosing breathable materials Avoiding habits that trap moisture

❤️ Part 4: Why These Steps Help Everyone

These precautions don’t just protect buildings or prevent cleaning bills. They actively support the health, wellbeing, and comfort of a wide range of people:

👃 1. People with Breathing Problems

  • Asthma, ABPA, bronchiectasis, and COPD can all be triggered or worsened by damp air and mould.

  • Condensation precautions reduce airborne spores, allergens, and moisture.

🧓 2. Older Adults

  • Older people are vulnerable to damp-induced joint pain, cold-related illness, and falls from slippery surfaces.

  • Warm, dry homes improve comfort and reduce hospitalisation risk.

👶 3. Babies and Children

  • Developing lungs and sensitive immune systems are affected by poor indoor air quality.

  • Dry air reduces the chance of chest infections, wheeze, and eczema flare-ups.

🤧 4. People with Allergies or Sensitivities

  • Lower humidity reduces dust mites, mould spores, and VOC off-gassing.

  • Fewer reactions = fewer health complaints during stays.

🧠 5. People with Anxiety, Depression, or Chronic Illness

  • Mould and damp worsen low mood and fatigue.

  • Dry, well-aired homes are more comfortable, restful, and reassuring.

🧑‍🔧 6. Cleaners, Carers, and Workers

  • People who spend time cleaning or maintaining homes are often first exposed to hidden damp.

  • Good setup protects their health and helps them do their jobs more safely.

🧱 7. The Building Itself

  • Damp causes rot, damage to plaster, and paintwork failure.

  • Good moisture control extends the life of the building and reduces maintenance costs.

✅ Summary: Everyone Benefits

Whether you’re a landlord, a tenant, or just staying for a few nights – moisture-aware behaviour and property setup benefits everyone.

These changes are:

  • Low cost

  • Easy to implement

  • Proven to improve comfort and reduce risk

by GAtherton

🌿 Allergies and Intolerances: A Complete Guide for Patients

Reactions to foods, pollen, mould, animals, or chemicals are increasingly common. But many people don't realise there’s a difference between allergies and intolerances — and that understanding this difference can help protect your health and guide treatment.

This guide explains:

  • What allergies and intolerances are

  • How they develop

  • How they differ

  • Why more people are affected than in the past

  • What to do if you’re experiencing symptoms

🤧 What Is an Allergy?

An allergy happens when your immune system overreacts to a harmless substance (called an allergen). Instead of ignoring the substance, your body sees it as a threat and releases histamine and other chemicals, causing inflammation and symptoms.

✅ Common Allergy Symptoms

  • Sneezing, runny or blocked nose

  • Itchy eyes or throat

  • Wheezing or coughing

  • Rashes or hives

  • Swelling of lips, face, or throat

  • Nausea or vomiting

  • In severe cases: anaphylaxis, a life-threatening reaction that requires emergency treatment

🧴 Common Allergy Triggers

  • Pollen

  • Mould spores

  • Dust mites

  • Pet dander

  • Foods (e.g., peanuts, shellfish, eggs)

  • Insect stings

  • Latex

  • Medications (e.g., penicillin)

Onset: Usually within minutes to 2 hours
Severity: Can range from mild to life-threatening

🍞 What Is an Intolerance?

An intolerance is when your body has difficulty processing or digesting a substance. It does not involve the immune system and is not life-threatening, though it can be very uncomfortable.

✅ Common Intolerance Symptoms

  • Bloating

  • Abdominal pain

  • Gas or diarrhoea

  • Nausea

  • Headaches or migraines

  • Fatigue or “brain fog”

🧂 Common Intolerance Triggers

  • Lactose (milk sugar)

  • Gluten (in non-coeliac cases)

  • Food additives (e.g. sulphites, MSG)

  • Caffeine or alcohol

  • Certain fruits and vegetables (e.g., those high in FODMAPs)

Onset: Often delayed – hours after eating
Severity: Not dangerous, but can affect quality of life

🛑 What About Coeliac Disease?

Coeliac disease is different from both allergies and intolerances. It is an autoimmune condition triggered by gluten (in wheat, rye, barley), where the immune system damages the small intestine.

  • Can lead to nutrient deficiencies, fatigue, bone loss, and other complications

  • Requires strict lifelong gluten-free diet

  • Diagnosed by blood tests and intestinal biopsy

🩺 Allergy vs Intolerance: Side-by-Side Comparison

Feature Allergy Intolerance
System involved Immune system (IgE antibodies) Digestive, metabolic, or chemical sensitivity
Speed of reaction Fast (minutes to 2 hours) Slower (can take hours or be delayed until next day)
Common symptoms Hives, sneezing, swelling, wheeze, anaphylaxis Bloating, cramps, diarrhoea, fatigue, headache
Life-threatening? Yes No
Diagnosis available? Yes: skin prick or blood tests (IgE) Often by elimination diet or breath testing
Treatment Avoid allergens, antihistamines, adrenaline pens Avoid triggers, enzyme supplements, dietary management

⏳ Can They Develop Over Time?

Yes — both allergies and intolerances can develop at any age, even in adulthood.

  • Allergies may appear after repeated exposure, a change in environment, infection, or hormone shift.

  • Intolerances may emerge gradually and worsen over time, especially after illness or with changes in gut health.

Can They Go Away?

  • Some childhood allergies (e.g., to milk or egg) may fade with age.

  • Intolerances can sometimes improve if the gut heals or the irritant is removed temporarily.

🧬 Why Do Some People Get Allergies or Intolerances?

Several factors increase the risk:

Factor How It Plays a Role
Genetics Family history of allergies or intolerances
Environment Pollution, damp housing, early-life exposures
Immune sensitivity Some people’s immune systems are more reactive
Gut microbiome A diverse gut protects against food sensitivities
Stress and anxiety Can worsen or trigger symptoms in sensitive people

🔬 Why Are These Conditions Becoming More Common?

Over recent decades, both allergies and intolerances have become more widespread — especially in industrialised countries. Here's why:

1. Hygiene Hypothesis

  • Cleaner environments mean fewer early exposures to bacteria and parasites.

  • Immune systems may become overreactive, mistaking harmless things like food or pollen for threats.

2. Environmental Changes

  • More pollution, chemical exposure, and indoor living.

  • Increased use of cleaning products, synthetic fragrances, and pesticides.

3. Modern Diets

  • More processed foods, additives, and preservatives

  • Less fibre and fermented food = poorer gut microbiome diversity

4. Changes in Early Childhood Exposure

  • Less breastfeeding

  • More Caesarean births (altering gut flora)

  • Delayed introduction of allergens (now reversed in guidelines)

5. Better Awareness and Diagnosis

  • People are more likely to report symptoms

  • Testing and knowledge have improved, leading to more diagnoses

6. Stress and Modern Lifestyle

  • Stress may worsen sensitivity to foods, chemicals, or allergens

  • Stress can also influence gut function and immune balance

🧪 How Are Allergies and Intolerances Diagnosed?

Allergy Testing:

  • Skin prick tests

  • Blood tests for IgE antibodies

  • Oral food challenge (done in hospital if risk of anaphylaxis)

  • Referral to an allergy specialist

Intolerance Testing:

  • Elimination and reintroduction diets

  • Hydrogen breath tests (e.g., for lactose or fructose)

  • Intolerances often require trial and error

Never self-diagnose based on internet lists — mislabeling a symptom could lead to unnecessary food avoidance or missed health risks.

💊 How Are They Treated?

Condition Treatment
Allergy Avoidance, antihistamines, nasal sprays, inhalers, adrenaline pens (EpiPen)
Intolerance Avoid trigger foods, enzyme supplements, low-FODMAP diet
Coeliac disease Lifelong gluten-free diet, monitoring, dietitian support

🩺 When to See a Doctor

You should speak to your GP if:

  • You experience repeated symptoms after certain foods or environmental exposures

  • You’ve had severe reactions like swelling, wheezing, or fainting

  • You’re unsure whether your reaction is allergy or intolerance

  • You’re planning to reintroduce foods or need support with diet changes

🧭 Final Summary

Key Takeaways
Allergies involve the immune system and can be life-threatening
Intolerances do not involve the immune system and are not dangerous
Both can develop at any age and may change over time
Environmental, dietary, and lifestyle changes have contributed to rising rates
Diagnosis and management depend on proper testing and support

Understanding the difference between allergies and intolerances can help you:

  • Stay safe

  • Manage your symptoms

  • Avoid unnecessary restrictions

  • Get the care and advice you need

You are not alone — and support is available.

by GAtherton

⚠️ Advice for Aspergillosis Patients: Staying in a Holiday Cottage with Signs of Damp

If you're living with aspergillosis and arrive at a holiday rental that feels damp or smells musty, you need to take extra care. Even if there’s no visible mould, signs like bubbling paint, wallpaper, or condensation could indicate hidden damp — and increased risk of fungal spores in the air.

🧱 What You Might Notice on Arrival

  • Bubbling or peeling paint

  • Musty, earthy smell

  • Painted-over woodchip or textured wallpaper

  • Cold-feeling walls, especially near the floor or windows

  • No ventilation — windows sealed shut, fireplaces blocked, rooms feel airless

🏚️ Why Older UK Cottages Are Especially Damp-Prone

Many UK cottages built before the 1920s were constructed without a damp-proof course and without cavity walls.

What does that mean?

  • Solid walls (often brick or stone) absorb moisture directly from the ground or air

  • No cavity means moisture can easily move from outside to inside

  • These buildings rely on breathable materials to allow moisture to escape, such as:

    • Lime plaster

    • Limewash or clay paints

    • Open fireplaces and draughts to keep air moving

When modern renovations seal up the building using airtight windows, damp-proof membranes, wallpaper, and vinyl paints, the house traps moisture inside — which often shows as bubbling paint, musty air, or mould behind wallpaper.

🔧 Modern Changes That Make Damp Worse in Older Homes

Modern Change What It Does Why It's a Problem in Old Buildings
🔲 Plastic or vinyl paint Creates a sealed barrier Moisture gets trapped behind it — leads to bubbling and mould
🧻 Painted-over wallpaper (esp. woodchip) Hides old surfaces Holds moisture against cold, solid walls — mould risk increases
🪟 Double glazing & sealed windows Saves heat Cuts ventilation — humidity builds up
🚪 Draught-proofed doors Improves energy efficiency Prevents moisture from escaping
🔥 Blocked fireplaces Stops heat loss Reduces airflow in buildings that rely on passive ventilation
🧱 Cement or gypsum plaster Covers solid walls Doesn’t breathe — locks moisture in stone or brick

💧 Other Potential Sources of Damp in a Holiday Let

Source What to Look For Why It Matters
🚿 Leaky showers/baths Damp walls or floor below bathrooms Can cause hidden fungal growth in walls and floors
🪠 Plumbing leaks Damp skirting boards, floor bulges, water marks Often overlooked and slow to dry
🍳 Poorly ventilated kitchen Condensation on windows, odour after cooking Adds daily moisture to air
🪴 Laundry drying indoors Wet clothes on radiators or chairs A major source of humidity in winter
🪟 Uninsulated windows Condensation, especially at night Common mould growth point in corners
🌳 Earth or flowerbeds against walls Mossy or damp external walls Keeps outside wall permanently wet, especially with no cavity

🌬️ Why Damp Is a Problem for Aspergillosis Patients

Even if you don’t see mould:

  • Moisture encourages fungal growth, especially Aspergillus

  • Spores can be airborne and invisible

  • Poor ventilation makes the problem worse — spores linger in stagnant indoor air

  • Damp + dust + paint = ideal conditions for hidden contamination

✅ What You Can Do Right Now

  • Open windows daily, especially in the bedroom and bathroom

  • Avoid sleeping in rooms that smell damp or have visible bubbling or mould

  • If you brought a HEPA air purifier, use it in your bedroom

  • Don’t hesitate to move furniture slightly from cold external walls to reduce condensation

  • Monitor your symptoms — if you feel wheezy, unusually tired, or tight-chested, take action early

📩 What to Say to the Property Owner or Letting Agent

“I have a serious lung condition (aspergillosis) and need to avoid damp and mould. I’ve noticed bubbling paint, wallpaper, and a musty smell — likely signs of trapped moisture or poor ventilation. Could I move to another room or more suitable property?”

🧳 Tips for Booking Future Holidays

Before booking:

  • Ask if the property has any history of damp, water leaks, or condensation

  • Request interior photos — look for bare plastered walls, open fireplaces, and no wallpaper

  • Avoid properties that were built before 1920 and have:

    • Vinyl paint

    • Sealed windows

    • Woodchip wallpaper

    • No clear ventilation system

If unsure, choose modern or well-ventilated accommodation.

Bring:

  • Portable HEPA air purifier

  • Humidity monitor

  • Any rescue medication and a copy of your steroid/emergency plan

🛑 Summary for Aspergillosis Patients

🚫 Avoid ✅ Prefer
Musty smells, bubbling paint, painted wallpaper Clean-smelling, well-aired rooms
Solid walls with vinyl paint or cement plaster Breathable finishes (lime, clay paints)
Woodchip or vinyl wallpaper Bare plaster walls or limewashed surfaces
Sealed windows, blocked fireplaces Working ventilation and natural airflow

by GAtherton

Living Well with ABPA: A Practical Guide to Preventative Living and a Low-Risk Home

This guide is for people living with Allergic Bronchopulmonary Aspergillosis (ABPA), chronic fungal lung conditions, or other respiratory diseases that increase sensitivity to infections and environmental triggers. It combines expert-informed advice with practical strategies patients like Alison use to stay well, especially through winter.

🔗 Quick Navigation

Section 1: What Is Preventative Living?

Preventative living means taking small, proactive steps to reduce your exposure to fungal spores, infections, and environmental risks that can cause lung flares.

"I'm not over-cautious — I just evaluate risks. Lowering my expectations in winter has helped me stay well without feeling cut off." – Alison

Preventative living is not about fear — it’s about protecting your lungs and managing your energy, so you can live confidently and safely.

Section 2: Managing Risk During Winter

  • Wear FFP2 masks in crowded or poorly ventilated indoor spaces.
  • Prioritise venues with good air exchange (e.g. open windows or HVAC).
  • Stay socially connected through video calls or small outdoor gatherings.
  • Reduce physical contact when flu, COVID-19, or RSV are widespread.
  • Let family/friends know you’re managing a health condition, not avoiding them.

Section 3: Vaccination – Your First Line of Defence

Vaccination reduces the risk of severe illness from common respiratory viruses. Stay current with:

  • Annual flu vaccine
  • COVID-19 boosters
  • Pneumococcal vaccine
  • Shingles vaccine (if eligible)
  • RSV vaccine (for older adults and those with chronic lung disease)

Section 4: Keeping Your Home a Low-Risk Zone

Your home should be the safest place for your lungs. Here's how to reduce airborne risks:

4.1 Ventilation

  • Open windows when air quality is good
  • Use extractor fans in bathrooms and kitchens
  • Check air quality forecasts before airing out rooms
  • Use cross-ventilation where possible to create airflow
  • Avoid ventilation near high-traffic roads during peak hours

4.2 HEPA Air Filtration

  • Use a true HEPA filter, not "HEPA-type"
  • Make sure it's correctly sized for the room (check CADR ratings)
  • Bedroom units typically need CADR ~150+, living rooms ~300–500+
  • Run the filter continuously, not just occasionally
  • Place centrally or near breathing zone (not hidden in corners)

4.3 Damp and Mould Control

  • Use dehumidifiers if humidity is regularly above 60%
  • Run extractor fans during and after showers/cooking
  • Wipe down wet windowsills or condensation daily
  • Clean any visible mould using antifungal or bleach-based cleaners (never dry scrub)
  • Check for structural issues like leaks, damp walls, or poor insulation

4.4 Houseplants and Soil

  • Avoid disturbing soil (e.g. repotting) indoors
  • Add decorative pebbles or coverings to suppress soil spore release
  • Remove or treat plants with visible mould or poor drainage
  • Do not store compostable food waste indoors — empty daily to outdoor bins
  • Use gloves and a mask when handling potting mix or plant waste

Section 5: Cleaning and Dust Control

“Dust is your enemy.”

  • Use a vacuum with a built-in HEPA filter weekly.
  • Damp dust surfaces with a microfibre or moistened cloth (not dry dusting).
  • Wash bedding at 60°C weekly to kill dust mites and remove spores.
  • Use dust-mite proof covers on pillows and mattresses.
  • Declutter rooms to reduce places for dust to collect.
  • Remove or reduce wall-to-wall carpets, especially in sleeping areas.

Section 6: Antibiotics, Fungal Risk, and Immune Suppression

If you're using steroids, biologics, or long-term antibiotics, you may be more vulnerable to fungal infections.

  • Antibiotics can suppress bacterial flora and promote fungal overgrowth.
  • Infectious Diseases (ID) specialists will weigh your infection and colonisation risks.
  • Ask about alternatives like Hiprex (methenamine hippurate) for UTI prevention.
  • Ensure regular surveillance if you’re on immune-suppressing therapy (e.g. sputum culture, IgE levels, Aspergillus PCR).

Section 7: Talking to Family and Friends

Here’s how to explain your approach:

"I’m not avoiding people — I’m managing my condition. I still want to stay connected, but I may skip events where the risk is high. Thank you for understanding."

Practical Suggestions:

  • Invite others to meet for a walk or outdoor coffee
  • Use video calls, group chats, or watch-alongs to stay connected
  • Plan in-person visits for spring or summer when risk is lower
  • Let others know that small accommodations (like good ventilation or masking) help you attend more comfortably

Summary: A Balanced Approach to Everyday Safety

You can live well with ABPA by:

  • Reducing exposure to fungal and viral triggers
  • Keeping your home dry, clean, and well-filtered
  • Using medications wisely, in coordination with your care team
  • Protecting yourself socially and medically
  • Communicating your boundaries clearly but confidently

Preventative living is not about isolation — it’s about keeping your lungs safe so you can keep living life your way.

 

by GAtherton

🧪 Antibiotics, Fungal Risk, and ABPA: What Patients Need to Know

If you live with Allergic Bronchopulmonary Aspergillosis (ABPA) or another form of aspergillosis, you may be prescribed a range of treatments — including steroids, biologics, and sometimes antibiotics to prevent infections.

But how do these medications interact with each other? Could antibiotics make fungal conditions worse? And when should you use them?

This guide explains how different specialists, especially Infectious Diseases (ID) consultants, approach these questions, and what patients should know when balancing treatments for infections, inflammation, and immunity.

💊 What Are Prophylactic Antibiotics and Why Are They Used?

“Prophylactic” antibiotics are low-dose medications taken regularly to prevent infections, rather than to treat a current one. You may be prescribed them if you:

  • Have frequent chest infections due to asthma, bronchiectasis, or ABPA

  • Are prone to urinary tract infections (UTIs), especially in winter

  • Use long-term steroids, which can reduce your ability to fight bacterial infections

Examples include TRISOL (trimethoprim), azithromycin, or doxycycline.

🦠 Can Antibiotics Make Fungal Problems Worse?

Yes — especially with long-term use. Here's why:

  • Antibiotics disrupt the natural balance of bacteria in the body

  • This allows fungi like Aspergillus (or sometimes Candida) to multiply more easily

  • The risk is higher in people taking steroids, biologics, or who already have fungal colonisation or sensitisation

So while antibiotics may prevent bacterial infections, they can increase the risk of fungal flare-ups — especially in the lungs.

🧠 What Do Infectious Diseases (ID) Specialists Consider?

If you're being seen by an ID team (such as at a specialist aspergillosis clinic), they will carefully assess the balance between preventing bacterial infections and not encouraging fungal overgrowth.

ID specialists tend to:

  • Avoid long-term antibiotics unless absolutely necessary

  • Pause antibiotics to allow accurate cultures to be taken

  • Work with Respiratory and Urology teams to manage infections and inflammation together

  • Consider non-antibiotic options for UTI prevention, such as:

    • Good hydration

    • Methenamine hippurate (Hiprex)

    • Vaginal oestrogen (in post-menopausal women)

🧯 What About Steroids and Biologics?

  • Steroids (like prednisolone) are important in controlling allergic inflammation in ABPA

    • But they also suppress the immune system

    • And raise blood sugar, which can fuel fungal growth

  • Biologics (like omalizumab or dupilumab) are more targeted

    • They may allow you to use fewer steroids

    • But they still modulate the immune system, so infection risk must be monitored

When using steroids or biologics, ID teams may recommend:

  • Close monitoring of fungal markers (e.g. IgE, Aspergillus PCR, sputum culture)

  • Antifungal therapy alongside other treatments if needed

  • Avoiding unnecessary antibiotics to keep fungal balance under control

✅ When Might It Be Safe to Stop Prophylactic Antibiotics?

If you're on long-term antibiotics for UTIs or chest infections, and your infection rate has dropped, it may be safe to pause prophylaxis. This is more likely if:

  • Recent infections have been mild or infrequent

  • Your Urology or Respiratory team agrees

  • Cultures are negative, and symptoms are stable

  • You have access to fast, “test and treat” options if a new infection occurs

In some cases, your doctor may stop antibiotics so blood and urine cultures can be taken without interference — to ensure any future treatment is accurate and appropriate.

🧾 Key Takeaways

Situation What to Consider
You’ve been on TRISOL or another antibiotic Reassess whether infections are still frequent/severe enough to justify it
You’re starting steroids or biologics Watch for fungal flare-ups — you may need antifungal support
You’ve been told to stop antibiotics temporarily This may be to allow clear diagnosis (cultures, IgE, sputum tests)
You’re not sure what to do next Ask for your care to be coordinated between ID, Urology, and Respiratory teams

🩺 A Word on Coordination

If multiple specialists are involved in your care (e.g. GP, Urology, Infectious Diseases, Respiratory), it's important they communicate clearly. You may want to ask:

  • “Can you confirm this plan with my other specialists?”

  • “Do I need a fungal check-up before restarting antibiotics?”

  • “Could we use a non-antibiotic prevention strategy instead?”

This will help avoid overlapping risks, conflicting advice, or missed infections.

🗣️ Final Thought

In ABPA and other fungal conditions, it's not a matter of choosing between bacteria or fungi — it's about managing both carefully.

Antibiotics, steroids, and biologics all have a role — but they need to be used in balance, with infection risk, fungal exposure, and immune suppression monitored as a whole.

by GAtherton

🫁 Understanding ABPA: When and Why It Appears, and Who’s at Risk

Allergic Bronchopulmonary Aspergillosis (ABPA) is a chronic allergic lung condition that’s often misunderstood or misdiagnosed — especially when it appears for the first time in adulthood. This article answers key questions:

  • Why does ABPA usually develop later in life?

  • Can it be diagnosed earlier?

  • What about severe asthma in children — is that an exception?

  • Are there groups at special risk, like those with cystic fibrosis?

This guide is designed for patients, carers, and anyone living with or at risk of ABPA.

🔹 1. What Is ABPA?

ABPA is a hypersensitivity reaction (not a fungal infection) to the fungus Aspergillus fumigatus, which is found in the air we breathe.

In people with asthma, cystic fibrosis (CF), or structurally damaged lungs, Aspergillus can settle in the airways and trigger a strong allergic immune response, causing:

  • Swollen and inflamed airways

  • Mucus build-up that’s hard to clear

  • Worsening of asthma or coughing

  • Irreversible lung damage (e.g. bronchiectasis) if untreated

🔎 2. Why Is ABPA Usually Diagnosed in Adulthood?

Despite being linked to asthma — often a childhood condition — most cases of ABPA are diagnosed in adulthood, typically between ages 20 and 50.

Why? Because ABPA is only diagnosed when several things happen at the same time:

  • High total IgE levels

  • Positive Aspergillus-specific IgE or IgG

  • Lung symptoms like wheezing, cough, mucus

  • CT evidence of mucus plugging or early bronchiectasis

A person might be allergic to Aspergillus (sensitised) for years without having ABPA. Only when their immune system crosses a certain threshold — sometimes after a viral illness, fungal exposure, or change in immune function — does full ABPA emerge.

This helps explain why many people are diagnosed for the first time in their 30s or later, even with a history of asthma.

🧒 3. Is ABPA Ever Diagnosed in Childhood?

✅ Yes — but it’s rare.

There are a few specific exceptions:

🔸 A. Cystic Fibrosis (CF)

  • ABPA is much more common in people with CF — including older children and teenagers.

  • CF causes thick mucus and impaired airway clearance, which promotes persistent exposure to Aspergillus.

  • That’s why CF care guidelines include annual ABPA screening from a young age.

🔸 B. Severe asthma in childhood

  • Children with very severe or poorly controlled asthma may have:

    • High IgE

    • Mucus build-up

    • Sensitisation to Aspergillus

  • These children may develop fungal allergic airway disease or be labelled as having SAFS (Severe Asthma with Fungal Sensitisation).

  • Full ABPA may still not be diagnosed until later adolescence or adulthood — but these cases may represent a kind of “pre-ABPA.”

🔸 C. Rare immune disorders

  • Conditions like hyper-IgE syndrome (HIES) or chronic granulomatous disease may cause early ABPA-like features.

  • These are rare and usually managed by immunology specialists.

⚖️ 4. What’s the Difference Between ABPA, SAFS, and Sensitisation?

Condition Description Age group
Aspergillus sensitisation Immune system reacts to fungus, but no lung damage or ABPA symptoms Any age
SAFS Severe asthma + Aspergillus allergy, but does not meet full ABPA criteria Mostly teens and adults
ABPA Allergy to Aspergillus + lung damage, high IgE, mucus, flare-ups Usually adults, sometimes teens with CF

🧪 5. Could a Screening Test Detect ABPA Earlier?

Not currently — but research is ongoing.

Today, ABPA is diagnosed based on a set of criteria (IgE levels, imaging, symptoms), not a single test. That means:

  • Early warning signs may be present for years

  • But ABPA is only diagnosed once enough features appear together

A future screening test for “pre-ABPA” could:

  • Identify at-risk individuals earlier

  • Allow close monitoring

  • Help start treatment at the first signs of disease

This wouldn’t “prevent” ABPA in every case, but could reduce its severity and protect lung function.

💡 6. Can ABPA Be Prevented?

We can’t fully prevent ABPA — but we can reduce risk and prevent long-term damage:

Strategy What It Helps Prevent
Reduce fungal exposure (damp, compost, hay) Immune flare-ups, new sensitisation
Monitor at-risk patients (CF, severe asthma) Missed early signs
Treat asthma or CF aggressively Mucus build-up and fungal colonisation
Investigate persistent cough/mucus or asthma flares Delayed ABPA diagnosis
Use steroids/antifungals/biologics when needed Inflammation, progression to bronchiectasis

📘 7. Summary: Key Takeaways

Question Answer
Is ABPA a childhood disease? No, it’s usually diagnosed in adults, even those with childhood asthma
Can it appear in children? Rarely — mostly in CF, severe asthma, or immune disorders
Why isn’t it diagnosed earlier? It requires multiple features to appear at the same time
Can it be stopped before it starts? Possibly in future — early monitoring could reduce damage, even if it doesn’t prevent ABPA
What should I do? Avoid triggers, manage asthma/CF well, seek early specialist input for unexplained symptoms

🗣️ Patient Tip

“If you’ve just been diagnosed in your 30s, 40s or later — that doesn’t mean it was missed. It means it’s finally been recognised, and now you can get the right treatment.”

by GAtherton

🌦️ Staying Safe with Aspergillosis During UK Weather and Health Alerts

People living with aspergillosis—including ABPA, CPA, Aspergillus bronchitis, or those on long-term steroids or antifungals—are especially vulnerable during periods of extreme weather. Understanding official UK weather and health alerts can help you take timely action to protect your lungs and overall health.

🔔 What Are Weather and Health Alerts?

In the UK, two major bodies issue public alerts:

1. Met Office Weather Warnings

  • Focus on immediate weather dangers: storms, heavy rain, wind, snow, ice, and fog

  • Issued in yellow, amber, or red based on severity and risk to life

2. UK Health Security Agency (UKHSA) Health Alerts

  • Focus on health risks from temperature extremes: heatwaves or cold spells

  • Jointly issued with the Met Office as part of the Weather-Health Alerting System

🟨🟧🟥 What the Colours Mean

Level What it means What you should do
Yellow Be aware: possible disruption Stay informed and prepare
Amber Be prepared: likely disruption Take action to protect health
Red Take action: major risk Follow emergency advice

☀️ Heat Alerts and Aspergillosis

Issued from June to September, these alerts warn of high temperatures that may affect health.

🔹 Why Heat Matters:

  • Hot, humid air can worsen breathing in people with lung conditions

  • Ozone and air pollution often rise during heatwaves, irritating airways

  • Aspergillus spores thrive in warm, damp environments, increasing exposure

  • People on antifungals (like voriconazole) may be photosensitive and prone to heat rashes

  • Steroid users may not regulate temperature well, increasing heat stress risk

🔹 What to Do:

  • Stay indoors during the hottest part of the day (11am–3pm)

  • Use fans, cool showers, and keep curtains closed in sunny rooms

  • Drink plenty of fluids (check with your doctor if you have fluid restrictions)

  • Avoid gardening, composting, or opening windows during dry, windy conditions

  • Protect your skin if taking sun-sensitive medications

❄️ Cold Alerts and Aspergillosis

Issued between November and March, these alerts warn of dangerously low temperatures.

🔹 Why Cold Matters:

  • Cold air can tighten airways, leading to coughing or wheezing

  • Cold increases the risk of chest infections in people with CPA or ABPA

  • Damp and mould thrive in unheated homes, raising fungal exposure

  • Cold-related stress can worsen cardiovascular strain and fatigue

🔹 What to Do:

  • Keep indoor temperature at 18°C or above, especially in the bedroom

  • Use dehumidifiers to reduce mould growth

  • Check for leaks or condensation, and ventilate bathrooms and kitchens

  • Wrap up warmly when going outside—wear a scarf over your nose and mouth to warm the air you breathe

  • If you use oxygen or nebulisers, make sure devices are protected from cold damage

🌪️ Storms, Floods & Other Weather Events

The Met Office issues warnings for:

  • Storms (wind, lightning)

  • Heavy rain and flooding

  • Fog

  • Snow and ice

🔹 Risks for Aspergillosis Patients:

  • Flooding or roof damage can promote indoor mould

  • Disrupted power may affect your oxygen concentrator, fridge-stored medication, or nebuliser use

  • Poor air quality may irritate airways

  • Increased fungal exposure after water damage or building repairs

🔹 What to Do:

  • Make a personal emergency plan (backup power for medical equipment, emergency contact list)

  • If your home is damp or recently flooded, ask your local council or housing provider for a mould survey

  • Stay inside during high wind or dust storms

  • Use an FFP2/FFP3 mask if entering dusty or damaged environments

🧭 Who Should Be Extra Cautious?

These alerts are especially important for:

  • People with CPA, ABPA, or bronchiectasis

  • Those on steroids, biologics, or antifungal therapy

  • People with adrenal insufficiency or immune suppression

  • The elderly, babies, or people with mobility or cognitive difficulties

  • People with a history of hospital admissions due to chest infections or exacerbations

📲 How to Get Alerts

You can receive real-time alerts from:

✅ Summary: Practical Steps

Alert Type Action for Aspergillosis Patients
Heat alert Stay indoors, cool the home, hydrate, reduce spore exposure
Cold alert Heat rooms, reduce damp/mould, stay warm, use respiratory meds as needed
Storm/flood Avoid mould-prone areas, prepare backup power/medication access
Air quality Avoid outdoor exposure, use masks and HEPA filters

📘 Extra Help & Resources

  • Ask your GP or hospital team if you can be added to a vulnerability list

  • If you’re in social housing, housing officers must act if the home becomes unsafe due to damp or cold

  • For support with mould, damp, or heating costs, contact:

    • Citizens Advice

    • Your local council

    • Your respiratory nurse or hospital’s community support team

by GAtherton

Understanding the Side Effects of Long-Term Prednisolone Use

Prednisolone is a widely used and effective medication for managing inflammation in aspergillosis. However, when taken for more than 3–4 weeks—especially at moderate or high doses—it can cause unwanted effects in different parts of the body. Knowing what to expect and how to reduce risks can help you feel more in control of your treatment.

Prednisolone is a synthetic form of cortisol, a hormone your body normally produces to manage stress and inflammation. When you take it in larger-than-natural amounts over time, it can interfere with how your body handles fluids, sugar, bone rebuilding, immune function, and even mood and sleep.

Below are the most common side effects and why they happen:

Common Side Effects and Why They Happen

Prednisolone mimics cortisol, a hormone naturally made by your body. But when taken in higher-than-natural amounts over a long time, it can disrupt many systems. Here's why these side effects happen:

  • Weight gain and fluid retention – Steroids affect how your body processes salt and water, leading to bloating and weight changes.
  • Moon face – Fat redistributes to the face, neck, and abdomen.
  • Thinning skin and bruising – Steroids reduce collagen production, making skin fragile.
  • High blood pressure – Caused by fluid retention and effects on blood vessel tone.
  • Increased risk of infections – Steroids suppress your immune system, making it harder to fight infections.
  • Osteoporosis – Steroids interfere with calcium absorption and bone rebuilding.
  • Muscle weakness – Corticosteroids break down protein, reducing muscle strength, especially in the thighs and upper arms.
  • Mood and sleep changes – Steroids can affect the brain’s chemistry, causing anxiety, insomnia, or mood swings.
  • Eye problems – Long-term use can raise pressure in the eyes or cloud the lens (cataracts).
  • High blood sugar or diabetes – Steroids make it harder for your body to use insulin effectively. **

What You Can Do to Minimise Side Effects

Managing steroid side effects involves a combination of lifestyle choices and medical support:

Strategy Why It Helps
Use the lowest effective dose Reduces cumulative exposure to steroid side effects
Switch to hydrocortisone when appropriate Mimics natural cortisol and is better tolerated long term
Monitor blood pressure, bone health, and blood sugar Early detection helps prevent complications
Take calcium, vitamin D, and possibly bone-strengthening medications Supports healthy bones
Exercise regularly Maintains strength, mobility, and mood
Eat a balanced diet low in salt and sugar Helps manage weight, BP, and blood sugar
Keep up with regular medical reviews Ensures your treatment is safe and effective

Trusted Resources and Support

You're not alone in managing steroid side effects. These resources offer guidance and community support:

Taking charge of your health with the support of your care team can greatly reduce the risks of long-term steroid use.

How to Lessen the Impact of Side Effects

Many of the risks of long-term prednisolone use can be reduced by making small lifestyle changes and working closely with your medical team. These steps can help protect your bones, heart, immune system, and overall wellbeing: You may also find support through:

  • Downloadable Steroid Emergency Cards (UK): https://www.endocrinology.org/adrenal-crisis
  • National Aspergillosis Centre patient resources: https://aspergillosis.org
  • Patient support groups such as the Aspergillosis Trust or National Aspergillosis Centre's patient forum
  • Your pharmacist, who can help with medication side effects and monitoring
  • Specialist endocrine nurses if adrenal insufficiency is diagnosed

Final Thoughts

Long-term steroid use helps many aspergillosis patients control inflammation and stay well. But it comes with responsibilities — particularly the need to monitor for adrenal suppression.

Understanding the HPA axis, recognising symptoms of AI, and knowing when and how to stress dose can empower you to live safely and confidently with aspergillosis.

Always talk to your specialist team if you’re unsure about fatigue, tapering, or illness management. You are not alone — and support is available.

by GAtherton