Sun sensitivity - for those people who are taking doxycycline and are strongly affected by the sun, I would recommend against using sunscreen, as it is ineffective against the sun sensitivity side effect that you get with doxyclicine, which can quickly lead to painful burns on your skin. The best thing you can do to avoid this is stay indoors during the middle of the day (when there is a high UV index), or wear long sleeve shirts and long pants (with a UV protection in them if you can), as well as a wide brimmed hat and sunglasses. For those who are very sun sensitive you can also wear light gloves as well. I found the following companies products worked well for me
Australian Cancer Council - http://shop.cancercouncil.com.au/
Sun Precautions - www.sunprecautions.com
Probiotics – if you are taking antibiotics for your Lyme Disease it is ESSENTIAL that you take a good probiotic at least 2 hours after your antibiotics. This is because antibiotics kill off the good and bad bacteria in your gut, which means that you are susceptible to a clostrium difficile infection, which can be fatal. For this reason, taking probiotics is essential for when you are taking antibiotics, and for about 2-4 weeks after you finish your antibiotic treatment.
http://en.wikipedia.org/wiki/Clostridium_difficile
http://www.cdiffsupport.com/aboutcdiff.html
Blood tests – because some of the medications used to treat Lyme Disease can be very strong, and because when the Lyme Disease bugs die off they produce neurotoxins that can damage your brain and other organs, it is important that you have regular blood tests to check your liver and kidney function. It is also vital that you regularly check your white cell and neutrophil counts as well, so you can know how your immune system is coping with the side effects of the treatment as well as the disease itself.
Co-infections – studies have shown that almost all people who have Lyme Disease have some sort of coinfection that they got at the same time as their Lyme Disease. Coinfections can include Babesia, Bartonella, Clamydia Mycofermentans, Ricksettia etc. It is vital that you treat the co-infections as well as the Lyme Disease infection – this because many of these coinfections depress the immune system making it difficult to fight off other infections.
Immune System – when your immune system is low, it is vital that you stay away from people who may be sick. Many people who die from Lyme Disease die from infections they have picked up from other people (such as chest infections - see Karl McManus' story). If your immune system is very low, consider making people wear masks and use an antiseptic handwash each time they enter your house. If you are in hospital, have a friend be with you & get them to insist on medical and general staff washing their hands each time before they touch you (you’d be surprised how many hospitals are full of really dangerous bugs, and even more surprised at how many medical and general staff don’t wash their hands when they should). You & your friend will be annoying, but this simple precaution may save your life. One nurse who used to come to my home advised me when visiting the Dr not to touch the magazines in the waiting room (take your own), as they are full of bugs from people you know are sick.
Hot weather – many people with Lyme Disease find that they get sicker in hot weather. For this reason if you live in a hot climate you will need to stay indoors (in air-conditioning if you can) during the day, and go outside after the sun has gone down and the temperature has dropped. Hot humid weather is often more difficult to cope with than hot dry weather.
Hot flushes / Night Sweats – if you are struggling with a Babesia coinfection and are having difficulty getting through the night due to hot flushes and night sweats, I would recommend a small portable fan beside your bed. When you are hot sleep facing the fan, and when you cool down roll over and sleep facing the opposite direction. This will help you control your body temperature more easily during the night.
Diet - many people with Lyme disease have to be very careful with their diet. This is because Lyme Disease affects the immune system, and because of the side affects of the medications used to treat Lyme Disease. If you are taking oral antibiotics it is vital that you do not eat sugar - this is because oral antibiotics kill all the bacteria in the gut - good and bad bacteria. If you eat sugar you feed mainly the bad bacteria (they love sugar) and run the risk of getting a clostridium difficile infection, which is potentially fatal.
In order to heal from Lyme Disease it is important that your immune system is functioning at its best. When you eat or drink sugar based food and drink your immune system is temporarily depressed for up to 12 hours. Many people with Lyme disease have damaged gastrointestinal systems, and so need to avoid foods that place extra stress on the gut such as gluten (wheat) and dairy. A really good book about the diet recommended for people with Lyme Disease is the Lyme Diet by Dr Nicola McFadzean. You can see more about it here - www.restoremedicine.com
Long Haul – get ready for your Lyme Disease treatment to be quite lengthy. The average time spent being treated for Lyme Disease is 2 years. Some people need less time than this, and some people require much longer treatment. Treated correctly many people are able to go into remission, but find that when their immune system is under stress (such as during another severe illness or pregnancy), or when they are in stressful situations (such as high pressure jobs or during high stress family events such as births, deaths and marriages) that their Lyme disease can come back – it is important to keep a close eye on your health, even when you are able to get into remission with Lyme Disease so that you can get on top of any relapse quickly.
YOUR MEDICAL TEAM
LLMD – If you want to get really well, it is vital that you work with a very experienced Dr who has treated a lot of people with Lyme Disease to remission. Often these Drs are referred as LLMD’s (Lyme Literate Medical Dr’s – although the title is also often used for Lyme experienced Naturopaths and Naturopathic Doctors as well). Self-treating either on your own or with a local Dr is dangerous and ultimately more expensive and not as effective. LLMD’s can be expensive, but they are worth it because you get well faster with their guidance. If you want to get well, you will need to find the very best (even if it means travelling a long way to see your Dr). Contact the following organisations to help you find a Dr that has extensive experience in treating people with Lyme Disease.
www.lymedisease.org
www.lymediseaseassociation.org
www.lymedisease.org.au
www.canlyme.com
Cures - avoid anyone who promises they can cure you (people with Lyme Disease are often desperate after they have lost their health, their relationships and their jobs, and can be very susceptible to snake oil salesmen).
Infectious Diseases Drs, Rheumatologists & Neurologists – many people who have Lyme Disease have seen many specialists who have been particularly unhelpful. I have found (and many other Lyme sufferers have found) that Infectious Diseases doctors, Rheumatologists and Neurologists are generally particularly lacking in up to date information about Lyme Disease, and can make you much sicker with their treatment (or lack of treatment). Many people have actually found that infectious diseases doctors are particularly angry about people suggesting that they have Lyme Disease. If you want to know more about why this is the case, I suggest you watch the documentary “Under Our Skin” – you can see it on Netflix or order a copy from the film makers.
www.underourskin.com
IV ANTIBIOTICS
PICC Line, Hickmans or Central Line Care
Currently the vast majority of people with Lyme disease are treated effectively with oral antibiotics – but for those who can’t tolerate the oral antibiotics or for those who are severely sick with neurological lyme disease treatment is sometimes delivered by IV through a PICC line, Hickmans Port or Central Line port-a-cath. Here are some suggestions on how to look after your PICC line, Hickmans or Central line.
Dressing Changes – it is ESSENTIAL that your dressing is changed weekly by a nurse or Dr who has experience with changing dressings for PICC lines, Hickmans or Central ports. It is vital that the dressing is changed weekly (at the most every 10 days), otherwise you leave yourself open to infection, and because the line is going in to either near or inside your heart, this is potentially life threatening. It is advised that the dressing is changed by a nurse or Dr who has experience in changing the dressing, as it is very easy to pull the line out slightly, which over time increases the risk of clots. Whilst you have a picc line, hickmans or central port it is also advised that you take your temperature every day (to make sure you don’t have a systemic infection) and for PICC lines check for signs of a clot (usually your arm turning grey, blue or purple due to reduced blood flow).
Dressings – the standard dressing in Australia is Tegaderm. Unfortunately I reacted very badly to his dressing (my skin came up in blisters and oozed – it wasn’t pretty). I found that Tegaderm HP, IV 3000 and Flexigrid Opsite worked well for me, but only when used in rotation. You will need to keep an eye on any irritation of the skin under the dressings and work out what dressing suits your skin best.
Showering - When showering with a Hickmans or Central Port-a-Cath – create a square of several layers of clingflim and secure this over your dressing with surgical tape (as this is less painful and easier to remove than regular tape). When showering with a PICC line, it is incredibly important NOT to get your dressing wet when you are having a shower. It is always better to be safe than sorry. With the following dressing dry
- Wrap your arm in clingfilm over your picc line and dressing. Make sure it is snug but not cutting off circulation
- Put talcum powder over the clingfilm
- Put on a picc line waterproof dressing protector – you can get these from drycorp www.drycorp.com
- Make sure you do not spray water directly onto the dressing protector (the manufacturer claims you can swim with the protector on, but I don’t think it is worth the risk)
PICC Line comfort - For those with IV antibiotics through a picc line, for the comfort factor I would recommend a small amount of gauze underneath the access the line where it comes out of your dressing with a tubular bandaged on top. For even more comfort a small amount of gauze between the line and the tubular bandage will make it more comfortable next to your body when you lean on your arm.
Tubular bandages are available in Australia here - www.sportstek.net/tubigrip.htm
SUPPORT
Support - Lyme Disease can be very isolating. Many people with Lyme Disease are diagnosed late, and so end up with Chronic or Late Stage Lyme Disease. Many of these people are severely affected by their poor health and a lot of them have lost their jobs, their homes and many of their relationships. Make sure you surround yourself with people who are there to support you (even if it is only through online Lyme Disease support groups).
Friends – one of the good things that comes from being VERY sick with Lyme Disease is that you find out who your true friends are. This can be quite a painful and lonely experience, but the upside of this is that the friends who do stick by you through your illness will be life long friends who you can always rely on, not “fair weather friends”. The same thing applies to family – some immediate and extended family will support you greatly, showing you their love in many small different ways. Other family members will be too busy with their own lives to truly understand your suffering, and then there will be family members who will be just downright cruel. Be glad that they are not supporting you through this – they are showing you their true selves. Surround yourself with people who love you and make you laugh, even when you are paralysed and having trouble breathing – one day you will be much better and able to return the favor to them.
Support for Family members - It can be hard for your family having someone so sick – Lymespouse is a website where spouses and partners of lyme sufferers can go to get some support. There are often support services available to make life easier for family members of lyme disease sufferers – from homecare (dressing, washing, feeding for the lyme patient), to house cleaning, transport, and respite care (to give the family members a break). Children of parents with Lyme Disease (or brothers and sisters of Lyme Sufferers) can be supported through young carer programs (currently only available in Australia and the UK – although there are some young carer programs starting up in the US).
www.lymespouse.org
www.carersaustralia.com.au
Counselling – sometimes the strain of having Lyme disease or supporting someone with Lyme Disease can be too much. When this is the case talking with a counselor or psychologist can really help. If you are needing to speak with someone urgently you can also use the 24 hour free counseling services Lifeline and Life goes on – the good thing about life goes on is that it is staffed by people who know what it is like to live with a chronic or life threatening illness. The kids help line is also a very good resource for people aged 5 – 25 who provide a free confidential support service.
www.lifeline.org.au
www.lifegoeson.org.au
www.kidshelp.com.au
MOBILITY ISSUES
Wheelchairs – it can be a VERY difficult decision to decide to use a wheelchair regularly ( I found it difficult because I didn’t want to accept that I was that sick). However, if you are having trouble walking or simply have very little energy it can open up a world of opportunities to you – without the wheelchair you are housebound, but with the wheelchair (and help from a family member or good friend) you can get out of the house more. Consider renting a wheelchair before you buy one so that you can see what features suit you.
Wheelchair tie – if you are using a wheelchair and are having trouble holding yourself up, you can use a wheelchair tie. You can purchse quadriplegic ties which will hold you into your wheelchair. However, what I have found which is more effective is a wide elasticated belt which is currently fashionable, and therefor much cheaper. The advantage of this is that the elasticated belt gives you a bit more movement, which means you don’t get as stiff from sitting in the same position all the time. The wheelchair tie enables you to stay sitting for longer periods because you are using less energy to hold yourself up (and assists with your balance if you have a tendency to tip over).
Parking- If you have trouble with walking, get a mobility permit for your car (it is called a disabled parking permit in Australia). This will make life a lot easier for you to be able to do your shopping, go to Drs appointments, and most importantly, from time to time have some fun. When you no longer require the permit (due to your successful treatment) , have a ceremony to hand it back in.
Driving – DON’T drive if you are feeling too unwell or unsafe. It is better to stop or restrict your driving whilst you are very sick – for your safety and that of other road users.
OT assessment - Consider having an Occupational Therapist come into your home and do an assessment (many local health organisations have a free OT assessment service). The OT will have lots of useful advice about how to do things better for your situation.
RECORD KEEPING
Notes - Take detailed notes in your Drs appointments so you can refer back them later. Initially I used an exercise book, and then moved to a colourful journal later on (it made it easier to find as I was getting ready to go to the appointment). Each year I started a new book, so that it made it easier to go back and get a sense of what happened when.
Digitise your medical records – my GP/PCP suggested that I scan all my medical records and notes into my computer and keep a back up copy. This makes it much easier to locate test results and previous treatment plans. Use a program such as evernote, which means you can access your medical records anywhere as long as you have access to a computer, handheld device such as an ipad or iphone and have a wifi or 3G connection.
Ipad – my GP/PCP gave me very good advice. If you can afford it, get an ipad (I got mine through a disability support scheme available to residents of my state). Firstly you will be able to take ALL your medical records and notes with you to ALL your Drs appointments (and you won’t have to lug around heavy files to each appointment as well). You can also take your notes from your appointments on your ipad (see soundnote under this). I take notes on all my Drs and other medical appointments on my ipad and back them up into evernote – these are then synched to my ipad, my computer at home and my GP/PCP’s computer – this means that at any time he can see what the other Drs are doing with my treatment. This has been really great in streamlining the information between the many Drs who look after me. You have to know and trust your medical team in order for this to work effectively. The final reason to get an ipad is that it is very light, which means if you are bedbound you can easily watch movies or documentaries (or talk with your friends online), and not have to worry too much about how long your arms will be able to hold themselves up.
Soundnote – soundnote is a brilliant software/app that I use on my ipad. I type my notes from Drs appointments (you can handwrite with a stylus as well) or my classes whilst recording the sound at the same time. If I am unsure of what was going on when I typed a certain note, I simply tap that part of my notes and it replays the sounds that were being recorded when I typed those particular notes. This is great when I want to check what type of medication or dosage the Dr was recommending, or if I wasn’t sure exactly what my teacher wanted me to do with a certain assignment. It is useful for Drs appointments, school or anywhere you need to remember what was being said – and many people with Lyme Disease have difficulty with memory (brain fog).
Symptom Diary - It is sometimes hard to see that you are making progress through your treatment, so it is a good idea to keep a journal or diary of your symptoms. I found that making a list for each Drs appointment of my symptoms and giving a percentage score of how I was feeling really made it easier to go back and see how I had improved (or how long new symptoms had been around for when asked many months later). Some people have found graphing their symptoms according to how severe they are works as well. You will need to experiment to work out the best way for you to keep track of your symptoms.
Journaling - It can be hard to see that there are good things in life for all of us. Journaling about what his happening for you emotionally can help you to work through difficult feelings. Make sure you aren’t just writing (or drawing) about the hard things though, give yourself a moment to write, draw or blog about the good things that are happening – if it is as simple as “I’m not dead yet”. No matter how bad things get, there is always someone else worse off that you are – make sure you are grateful for the good things in life (such as friends or family who are looking after you, or even as simple as the bird singing outside my bedroom window when I am stuck in bed paralysed).
Fun – being sick for a long period of time can mean many hours in hospitals, Drs waiting rooms, treatment rooms, and having long painful treatments. This means that life can get a bit too serious at times. Make sure you have some fun from time to time- even if this is just watching a movie in bed with someone you love snuggled up to you, or giving your cat a hug. As you get well you will be able to do fun things that require energy – make a list of all the things that you want to do when you get well – dream big (like walking on the moon). Just writing a list (or making a collage) like this can be fun. I find that when I am having a painful medical procedure I close my eyes and imagine myself doing one of the fun things on my list- it makes it much more bearable.
WEBSITES
These are some useful websites to get more information about Lyme Disease :-
www.lymedisease.org.au
www.karlmcmanusfoundation.org.au
www.lymedisease.org
www.canlyme.com
