Frequently Asked Questions about COVID19 and LAM.
Dr Jeffrey Lindenmayer, GP, Melbourne
Heather Telford, Past President, LAM Australia, Melbourne
What is SARS-CoV-2 virus and how is it related to COVID-19?
SARS-CoV-2 is a virus. The name is short for ‘Severe Acute Respiratory Syndrome Coronavirus 2’.
COVID19 is the illness caused by the virus. It is short for ‘Coronavirus Disease of 2019’.
But ‘COVID19’ is easier to say, so most people use ‘COVID19’ to mean both the virus and the illness.
What are Coronaviruses? Are they new?
Coronaviruses were first identified in 1965 although they may have infected humans and animals for thousands of years.
‘Corona’ refers to the crown-like capsule which surrounds a central core of RNA genetic material.
The capsule is covered with spikes of protein which allow the virus to enter cells of the animal they’re infecting.
Some types of coronaviruses infect humans and cause mild respiratory infections like the common cold or bronchitis.
Others infect animals. They cause diarrhoea in pigs and cows, and hepatitis in mice.
We believe animal coronaviruses commonly jump across to humans without causing illness or spreading.
But occasionally they cause serious infections.
In 2002 an animal coronavirus transferred from a civet (a cat-like mammal) to humans, causing the SARS epidemic.
In 2012 another coronavirus transferred from camels to humans, causing the MERS epidemic.
Both the SARS and the MERS strains were extremely virulent; that is, they caused serious illness and death. Between 10 and 50% of infected people died.
By comparison the death rate for COVID19 is about 2%.
But the SARS and MERS viruses were not very contagious so did not spread easily.
Relatively few people caught the diseases, and the viruses disappeared within 5 years.
Where did the SARS-CoV-2 virus come from?
The SARS-CoV-2 coronavirus apparently spread from bats to humans in a live animal market in Wuhan, China in late 2019 and was named the ‘Wuhan-1 variant’.
Most previously-well people who caught Wuhan-1 became mildly unwell with an influenza-like illness such as a fever and cough. Some got pneumonia and a few died.
But the Wuhan-1 variant was much more contagious than previous human coronaviruses.
Infected people easily transmitted it to others within five days of exposure, even if they had no symptoms.
Over the next 18 months it spread beyond China and across the world, infecting hundreds of millions of people.
New variants evolved due to mutations in the RNA core.
The ‘alpha variant’ was found in Britain last September, then the ‘beta variant’ in South Africa, and the ‘gamma variant’ appeared in Brazil and Japan, all with different characteristics.
In July 2021 a new mutation emerged in India and was named the ‘delta variant’.
The delta variant is even more contagious and more virulent than the earlier strains and can be transmitted to other people in just 2 days.
It has become the dominant and most lethal variant in most countries.
It is likely SARS-CoV-2 will continue to mutate, particularly if it is allowed to replicate where vaccination rates are low, such as Africa where only 3.5% of the population is fully vaccinated.
‘Mu’ and ‘lambda’ variants were recently identified in Columbia and Peru.
Future variants might be more potent than delta.
So far, the global death toll from COVID19 is close to 5 million.
Why is COVID19 vaccination so important if I have LAM?
COVID19 targets many organs including the lungs, heart and brain.
In the lungs it causes swelling of the airways and increased mucus production.
This reduces oxygen and CO2 exchange and causes breathlessness and exhaustion, hence the name ‘Severe Acute Respiratory Syndrome’, or ‘SARS’.
The most critical patients need to be placed on a ventilator in ICU to help them breathe.
If you have a chronic respiratory condition like emphysema, bronchiectasis or LAM your lung capacity is reduced, so further inflammation increases your risk of pneumonia, hospitalisation, ventilation, and death.
Pregnant women, diabetics, elderly people and those with impaired immunity are also vulnerable.
Vaccination doesn’t guarantee you won’t catch COVID19 but you’re less likely to get as sick.
Social distancing and face masks are still important.
Your family and friends should be vaccinated to reduce the chance of them infecting you.
How does Covid19 vaccination protect me against Covid infection?
Covid19 vaccines prepare your body for a future attack by the SARS-CoV-2 virus.
They work by exposing your immune system to the spikes on the viral surface.
Your body recognises the spikes as foreign and creates protective proteins called ‘antibodies’.
If you are exposed to the live SARS-CoV-2 virus, the antibodies attack the spikes and stop the virus entering your cells.
What’s the difference between vaccines?
Three vaccines are currently available in Australia and are known by their manufacturers’ names, AstraZeneca, Pfizer, and Moderna.
Novavax will release its vaccine in this country in late 2021.
The AstraZeneca vaccine is made in Melbourne under the brand name ‘Vaxzevria ‘.
It uses an unrelated virus (a deactivated ‘adenovirus’) to introduce the viral spike proteins (not the whole SARS-Cov-2 virus) to your immune system to stimulate anti-spike antibody production.
Pfizer vaccines are imported under the brand name ‘Comirnaty’ and the Moderna vaccines under the name ‘Spikevax’.
These vaccines contain small strands of mRNA which induce your cells to manufacture spike proteins, stimulating an immune response.
The Novavax vaccine works by directly injecting nanoparticles of spike protein to create anti-spike antibodies.
How effective are the vaccines? Which is better? Why do I need a second or third shot?
We measure the effectiveness of vaccines by the percentage of people they prevent becoming seriously ill or dying, not the percentage who become infected or mildly unwell.
AstraZeneca, Pfizer and Moderna vaccines have similar effectiveness.
After one vaccination about 65% of people are protected from serious illness or death.
After two vaccinations more than 85% are protected.
Novavax is apparently 96% effective.
By comparison, the ‘flu vaccine is less than 60% effective at preventing serious illness.
Although anti-spike antibodies produced by vaccination help fight SARS-CoV-2 infection, they don’t guarantee you won’t catch the virus or spread it to others.
But fully vaccinated people do not get as sick from Covid19.
They are less likely to be hospitalised and up to 20 times less likely to die from the illness.
If you wait until a particular vaccine is available before getting vaccinated, you take a greater risk of catching COVID19 and becoming very unwell.
Your best vaccine is whichever gets you fully vaccinated soonest.
Can rapamycin make the COVID19 vaccine less effective?
Yes, the vaccine may be less effective because rapamycin can reduce your immune system’s response to the spike protein, so the level of your antibodies may be lower.
The Australian Technical Advisory Group on Immunisation (ATAGI) recently advised that immunocompromised individuals should have a third injection to complete their primary course of COVID-19 vaccination.
Pfizer or Moderna vaccinations are preferred, even if Astra Zeneca was used for the first two, and should be given 2 to 6 months after the second dose.
LAM Clinics in Sydney and Melbourne hospitals echo this advice.
It is important to recognise that even after three vaccinations your protection may be below average, and boosters will be needed later.
How safe are the COVID19 vaccines?
Concerns about the safety of COVID19 vaccines were raised because of their rapid development, because mRNA vaccines have not been used before, and because of several rare but serious side effects.
In Australia the main concern is the risk of blood clots following AstraZeneca vaccination, in particular a condition called “Thrombosis with Thrombocytopenia Syndrome” (TTS) or ‘Vaccine Induced Thrombosis and Thrombocytopaenia’ (VITT).
TTS occurs when a clot, or “thrombus”, forms in a blood vessel in the abdomen, leg or brain, in association with low platelets in the circulation.
But it can also be caused by oral contraceptives, various infections or a lumbar puncture at a similar rate to the AstraZeneca vaccination.
In Australia, eight people have died from TTS out of 11.3 million doses of AstraZeneca administered.
The risk of TTS after COVID19 infection is 8 times higher.
Other rare but serious side effects of COVID19 vaccines include:
myocarditis and pericarditis (inflammation of the heart muscle and capsule)
deep vein thrombosis and pulmonary embolism
Bells palsy (facial palsy) and other neuropathies including Guillain-Barre Syndrome
allergic reactions, including anaphylaxis
These potential side effects may worry you. But it’s important to realise they are much more common after COVID19 itself.
Stroke, for example, is 13 times more likely after COVID19 than after the vaccine.
Myocarditis is 10 times more likely, 20 times in young men.
Pulmonary embolism and heart attack are 150 times more likely.
Compare these vaccine side-effects with those of rapamycin (‘Rapamune’), a drug taken by many women with LAM.
Potential side effects of rapamycin include high blood pressure, elevated cholesterol, kidney damage, various infections, haemolytic-thrombotic syndromes, skin cancer, lymphoma, and ironically, lung inflammation.
Your Respiratory Physician may prescribe rapamycin if, like the COVID19 vaccines, the substantial benefits outweigh the risks.
After each COVID19 vaccination you’ll probably have a sore arm for a couple of days and maybe a headache, muscle aches and a mild fever.
This is due to your immune system recognising the spike protein and creating an immune response.
Paracetamol, ibuprofen and rest are generally all you need.
I’ve already had COVID19 infection. Do I still need to be vaccinated? Why not just check my blood for antibodies?
The natural immune response to COVID19 infection does not protect you against re-infection as well as being vaccinated.
This is because infection stimulates antibodies which attack just one or two sites on the spike protein of the viral capsule.
But antibodies from vaccination attack several sites so are more successful at stopping invading viruses, particularly new variants.
So full vaccination is still advised after recovery from COVID19 infection.
Measuring antibody levels in your blood after vaccination or infection does not reliably indicate your resistance to initial infection or re-infection.
Currently available blood tests do not assess immunity to particular variants such as delta.
I’m taking rapamycin (‘Rapamune’) to treat my LAM. Will I get more side-effects when I have the vaccine?
No. Rapamycin does not increase your risk of side-effects from Covid19 vaccination and should not be stopped before you get the jabs.
The vaccine cannot cause COVID19 infection since it delivers just small fragments of the virus, and these are degraded by the antibodies which your immune system creates.
Rapamycin is an immunosuppressant so if you become particularly unwell after the vaccination, or at any other time, please see your GP.
Why will I need boosters in years to come?
Many vaccines like Tetanus and Whooping Cough lose their effectiveness over time so booster shots are needed every few years.
Other vaccines such as the influenza vaccine become less effective when the virus mutates and a new version is given to match new viral antigens.
COVID19 vaccines gradually lose their effectiveness too, particularly against the delta strain.
In Israel a Pfizer booster is recommended six months after the second jab. ATAGI has indicated we will adopt this policy in the future. Novavax may fulfil this role.
Conspiracy Theories, alternative treatments and anti-vaccination movements
The COVID19 pandemic has come with numerous conspiracy theories, often distributed through social media.
Some groups challenge the existence or prevalence or virulence of SARS-CoV-2, or claim statistics about COVID19 are distorted by health authorities and governments.
Others claim pharmaceutical companies withhold simpler treatments to increase profits, or misreport the efficacy or side-effects of their vaccines.
It is difficult for lay people to evaluate the legitimacy of these theories, particularly when they include many accepted facts but draw false or misleading conclusions.
(1) It is true some of the sickest COVID19 patients have low serum vitamin D or zinc levels, and that COVID19 spreads more in winter when vitamin D levels tend to fall.
Therefore, one theory argues, if we all took vitamin D and zinc supplements we’d be protected.
It sounds logical.
In fact, vitamin D and zinc are often low in elderly or chronically unwell people who are more vulnerable to COVID19 for other reasons, and viruses like SARS-CoV-2 spread more in winter because we stay indoors.
Zinc and vitamin D supplements have little benefit in treating COVID19.
(2) Ivermectin and hydroxychloroquine have been proposed as treatments for COVID19.
Doctors and vets have prescribed ivermectin for many years to treat parasitic worms and scabies. Hydroxychloroquine is used for autoimmune diseases like rheumatoid arthritis and lupus.
Laboratory studies have shown ivermectin inhibits SARS-CoV-2 infection in cell culture, while hydroxychloroquine impairs SARS-CoV-2 penetrating animal cells.
However the dose of ivermectin required to treat COVID19 is fifty times the anti-worm dose, which is toxic, and clinical trials have shown hydroxychloroquine does not reduce serious COVID19 infections or deaths.
(3) Despite various claims, COVID19 vaccines do not alter your DNA, were not developed using foetal tissue, do not reduce your fertility, and do not contain eggs, gelatin, latex, preservatives, heavy metals, implants or microchips.
When you hear such claims ask yourself these questions:
Who is advocating these theories? What are their credentials?
Does Craig Kelly, Clive Palmer, Pete Evans or Alan Jones have sufficient knowledge or experience in infectious diseases, cell biology, statistical analysis or public health to interpret or challenge the data?
Would doctors, scientists and epidemiologists — the same people who spend their lives researching and treating LAM — really fabricate their findings to mislead you?
If you agree to take rapamycin with its significant known side effects, why would you decline a vaccine with fewer risks but potentially life-saving benefits?
What is ‘Long COVID’?
‘Long Covid’ is a poorly understood condition where people who catch SARS-CoV-2 continue to suffer from tiredness, lethargy, depression, joint pains and shortness of breath for a further 12 weeks or more after the acute infection.
The reported risk of Long Covid varies widely between studies (from 3 to 20% of infected people) but is more common in people who become sickest with COVID19, people with chronic health problems, those aged over 50, and women.
Long Covid has been likened to Chronic Fatigue Syndrome which sometimes follows Glandular Fever, and has no specific treatment.
Will COVID19 ever go away, like SARS and MERS?
Probably not, at least, not in the next few years.
New variants will continue to emerge, particularly while the virus is able to propagate in unvaccinated populations.
New variants may be more contagious, more virulent, or less susceptible to vaccination.
Regular booster jabs may be needed.
A range of new COVID19 vaccines are under development.
A combined Influenza / COVID19 booster is being developed by Moderna.
A vaccine known as ‘ZyCoV-D’ was recently developed in India where it is given to people from the age of 12.
It uses a high-pressure jet to deliver circular strands of DNA under the skin and is less painful than a needle.
ZyCoV-D is simpler to make than Pfizer and Moderna which use mRNA, and doesn’t need to be stored at very low temperatures, making it easier to transport to remote locations.
mRNA and DNA vaccines have been under development since the 1990’s to treat auto-immune diseases and cancer, and the current pandemic has given impetus to this research.
Perhaps one day we’ll have a vaccine for LAM.