Tips and hints on Living with Lyme Disease
GENERAL TIPS
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.
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 (previously known as the Californian Lyme Disease Association)
www.lymediseaseassociation.org – Lyme Disease Association of America
www.lymedisease.org.au – Lyme Disease Association of Australia
www.canlyme.com – Lyme Disease Foundation of Canada
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
