Lyme disease leaves you at your wits’ end. For deerstalker Tim Pilbeam, who has been living with it for 20 years, he has given up on the NHS and turned to alternative medicine – and he is learning to live with the disease. He has good days and bad days. Find out what it’s like.
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Lyme facts and thoughts, by Tim Pilbeam
Who am I?
- 57 years-old
- Sportsman (hockey, running, cycling etc)
- Avid hunter
- Hunting journalist that travels
- Loves adventure
- Loves travelling
- Has dogs
- Everyday joe.Here are my bullet horror facts of Lyme…
What is Lyme?
- It is a borrelia bacteria with more than 50 different types. They are Spirochetes that burrow and hide in the CNS, body cell and joints, not so much in blood. That is one reason why blood tests are so inconclusive.
- On average, 30% of ticks have Lyme, but that can range from 0% to 80% in different areas of the country.
- At least 30% of people know they have been bitten. 70% do not. So, many will have the disease, but it lies dormant for years as immune systems control it.
- At least 30% of people do not show the round ‘target’ or bulls-eye rash.
- It can take three months or longer for symptoms to appear after a bite. Start to feel bad? take antibiotics.
- At least 30% of UK blood tests (Western blot and Elisa tests) come back with a false negative result (and sometimes false positive) The reason for this is that Lyme hides in the body. It is clever.
- The tick can also inject more than 300 co-infections. Most common in the UK are bartonella, chlamydia, cox saki virus, babesia, ehrlichia, mycoplasma, anaplasma, Q fever.
- Co-infections work together with the borrelia and weaken the immune system, reactivating dormant viruses within the body.
- If the borrelia and co-infection bacteria has been in the body for more than a year, it is called a chronic or long-term condition which becomes hard to eradicate completely.
Famous people affected
- Kris Kristofferson, Kelly Osbourne, Avril Lavergne, President GW Bush, Ben Stiller, Ray Mears, rugby player Matt Dawson. Billionaire John Caudwell, who founded Phones4U, had 11 of his family contract the disease, with his son crippled and bedridden for years. How did they all come into contact with ticks? Can it be transmitted?
- Fatigue, fibromyalgia or major joints aching that migrate around the body, migraine, muscle aching, brain fogging, forgetfulness, regular colds and flu symptoms, skin rashes, changed sleep patterns or insomnia, worryingly heart problems, pins and needles, night sweats etc.
- Borrelia is called the great pretender / imitator / mimicker as it imitates so many common complaints, but to have all of them is what is hard to pinpoint. Some have individual symptoms. It also changes or evolves, making it hard to control.
- It is often misdiagnosed as burnout and depression (i.e. modern diseases such as ME).
- As a firearms holder, picture going to your local GP. You explain that one minute you feel great, and then awful, your head feels detached, and all you want to do is sit down and sleep. You do not enjoy company, you are intolerant and reclusive. The D word (depression) could well be mentioned… No. Not good for FAC holders.
- I has been proved that moderate physical exercise can help, and that is what I do.
How is it spread?
- It is transmitted by a tick or insect or a bit from an animal that can be in the grass/undergrowth, or on vectors such as, deer, dogs, cats, birds, sheep etc. Also from mosquitos and other biting insects.
- Not just in the country side, but parks, gardens and playgrounds. Matt Dawson (England Rugby player) was bitten in a London park (Richmond) and needed heart surgery. He was misdiagnosed for 13 years.
- Ticks crawl up trousers, arms or underwear to find warm areas of the body.
- There are 3,000 new cases every year in UK.
- It is the fastest growing vector born disease in Europe. Cases have quadrupled over the past 10 years in UK.
- Why? Climate change (warmer), wearing fewer clothes, also towns spreading into countryside.
- If bitten or you think you have, take strong antibiotics (ABs) for at least 2 weeks (minimum) and it may go. ABs are not a 100% guarantee, even if taken early.
- Symptoms can take weeks to manifest after a bite.
- Some may have been bitten with no symptoms, but maybe another bite kick starts it or triggers it, or something drastic happens, a trigger, (emotional, illness, accident, excessive fatigue, something that is unusual).
- Once embedded it hides in the central nervous system and joints, making it hard to eliminate completely.
- If you hit the borrelia too hard from the start, it will react by giving off toxins, or the body may not be able to cope with getting rid of the bacteria, and this is called a Herxheimer reaction or Herx reaction, which can be painful.
- As it affects some many things within the body, just attacking the borrelia is not always effective, so a more all-encompassing approach is required.
- Tick removal is important. If squeezed, the bacteria and co-infections are transmitted in the tick’s saliva so more could be injected. If pulled, mouth parts in skin left behind can cause infections. Use tweezers or a tick puller. Not a cigarette nor vinegar.
- 20 years ago, bitten. 5-inch target rash on inner thigh, pulled off a large tick and thought nothing more about it.
- 15 years ago, suffered intermittent tiredness, had many tests (brain scans, stomach tests) but just got on with it. Told I was too busy working.
- 10 years ago, noticed fatigue getting worse, realised that I was not quite right. London blood tests negative for Lyme. Also realised that I was mentally tired but physically still OK which was rather strange. For example, I did not want nor was I excited to play hockey before the game, but once I started I was fine. Odd.
- Five years ago, I realised that I probably had mild symptoms of Lyme but did not know what to do.
- Three years, things started to deteriorate. I had to do something.
- Aching joints, (knees, elbows, neck) brain fogging with constant dull headaches, chronic fatigue, skin rashes that move, sore eyes, forgetfulness, slurry speech, and I am even more impatient than normal easily irritable with bouts of anger / frustration. I do not suffer from colds and flu-like symptoms as I think I am physically fit, which helps.
- Physically is has not affected me until recently but mentally I am exhausted. No enthusiasm mentally, but once I get going I am fine.
- I enjoy physically pushing myself, but I soon realised that it was taking a long time to recover with delayed bouts of body feeling like it is shutting down or protesting. Immune system not coping – overdoing it.
- For me, the fatigue and brain fogging comes and goes, one minute feeling pretty good and then, as soon as I wake up, I know that I could start the day on 30% energy level which is frustrating.
- Alcohol can play havoc.
- Now: constant aching joints, chronic fatigue so falling to sleep late PM and evenings but sleep patterns all over the place. The head: mild headache, brain fogging, feel like stress in forehead but all around head. Makes me bad tempered, irrational, argumentative and zero tolerance. Also forgetting things – kind of menopausal.
- Classic situation. Driving on local road and suddenly not recognising where I am or where I want to go. Or standing in front of the camera, totally forgetting what I am meant to be saying.
What have I done so far?
- Blood tests result were negative.
- By pure fluke, met up with a Swedish practitioner Thomas Tullholm when aching joints and headaches were becoming noticeable and getting worse. By using a form of from of kinesiology, he instantly confirmed I had an infection of Borrelia burgdorferi. He prescribed a cocktail of pills as he was adamant that antibiotics will not cure long term or chronic Lyme.
- Symptoms disappeared within three months after being given natural herbal pills and potions and I was told that the Lyme has disappeared. Unfortunately, after another nine months, it returned.
- Understood it is now a case of managing the disease and probably no cure as I had a chronic / long-term infection, so I continued to take herbal mixes, but it started to return on a more regular basis.
- I needed to know exactly what I had. At a cost of just under £1,000, blood taken by local nurse were sent to Armin labs in Germany.
- Results: the borrelia has been hit hard but I tested positive to Borrelia burgdorferi, plus co-infections of myoplasma, coxsakie B, chlamydia and pneumoniae.
- The borrelia and co-infections are working together, attacking all parts of the body, and can seriously reduce the effectiveness of my auto immune system. This allow viruses that are normally not a threat, to become active. Hence longer recovery and body protesting if I do OTT things.
- I continue with herbal and homeopathic potions and pills, but the symptoms are becoming progressively worse.
Past 3 months
- Last 3 months have been dreadful. I may have been bitten again to flair up disease? Filming abroad in Argentina, Portugal or everyday deer stalking or on the farm.
- Decided to try autonomic response testing (ART) that uses applied kinesiology, that picked up that whilst the borrelia was under control or present, also bartonella another co infection had evolved and was active. Mycoplasma was also active and allergic reaction for mould.
- It seems that when managing these co infections, they seems to change, so for a time the bartonella is bad and, so we target it, then another one flares up. So once again, a case of managing it.
`What are the options? Can it ever be fully eradicated? (Ray Mears cured after 10 years of suffering, so hope for us all).
- If recently bitten or have symptoms within 3 months, take Antibiotics no question – do it for 2-4 weeks. But be open to the thought that it may not be fully eradicated and symptoms may return. The longer it is left, the more chance it will stay.
- If a chronic or long-term sufferer, not so easy. Try to find out exactly what you have as normal blood tests are inconclusive, so if you can, send your blood to a specialist disease unit (need to convince your GP) but then, what are the options?
- 1- 3 months + on strong antibiotics (pills or intravenous) that could cause serious side effects, especially the gut, as it wipes out the flora. The gut is 80% of the immune system. You must work with a Lyme expert to balance out the effects of the ABs. It may still not eliminate the bacteria.
- Herbal route. London Clinic of Nutrition, Cowden or Buhner herbal protocols, understanding that it may take a long time to control or find out how to manage the disease. Medical profession is sceptical about this. Be careful there are many so-called specialists out there who purport to cure people.
- Autonomic response testing (applied kinesiology) using herbal or homeopathic practices. May take time and pills potions add up.
- Breakspear Clinic in Hertfordshire.
- Go to the US, where they are more experienced that the UK for Lyme.
- Stem Cell clinics in US and Infusion, Germany, but costly £25K+ and scary.
- Low dose Naltrexone which boosts your immune system.
- Ozone treatment that is popular with Lymies.
- Whatever you do, do much research. Manage your expectations, as this is such a complicated disease, affecting so many things, it could well take years to manage effectively.
Other Lyme disease news
Ticks cause other diseases too. A viewer sends us an article which claims 154 people have been admitted to hospitals in Austria with the viral infection FSME, also called early summer meningococcal encephalitis) caused by tick bites. The parasites is believed to have arrived in Austria on migratory birds.
In 2017, former England rugby captain Matt Dawson has revealed he had to have heart surgery after being bitten by a tick. He was bitten by the bug in London while visiting a park early last year and was later diagnosed with the disease.
And the World Cup winner, who has 77 caps for England, is doing all he can to raise awareness of the disease, after he has had multiple heart operations and 18 months of treatment to rid him of the illness. Dawson, said: “I’d heard of Lyme disease before. It was something I’d always associated with places abroad – on the continent, in America, wherever there were deer. There’s no way that I would’ve walked through a wood or a forest with my kids and gone back home and thought, right, I’ll just check for some ticks just to make sure everything is fine. I just wouldn’t have thought of that. It was a really scary time for me and my family. Such a tiny creature caused me to end up needing heart surgery.”
“I’m still on medication and it’s going to take a lot of time for the heart to fully recover. This is not something that should be looked at like: ‘oh it’s only a tick, a tick is a bit like a flea, its fine! These ticks carry some really quite potent, serious bacteria and they can cause you a lot of problems. Raising awareness of them is imperative.”
Dawson is now working with The Big Tick Project to raise awareness of the dangers of ticks.
Meanwhile, a Lyme disease sufferer gets her husband to sting her with bees 30 times a week as she believes it helps with her symptoms. In 2017, Ingrid Watt, 36, buys bees online and then asks her partner Darren to hold the bees against her back with a tweezer until they sting her. She leaves the stings in her back for 20 minutes to get the desired effect.
As strange as this practice sounds, Ingrid believes that the venom is bringing the symptoms of her disease under control, something that the medicines prescribed to her haven’t been able to do.
She insists that the pain is worth it and that she feels healthier than ever before. Ingrid believes that she contracted Lyme disease while helping with out with lambing near her home in Inverness.
Here’s the advice from the British Deer Society: