How to Cope
My name is Chazmyn and I have Lyme Disease.
If you're reading this, then you must have also been bitten. I'm sorry you are not feeling well - but welcome to LymeLand.
Lyme is a baffling disease and you need all the help you can get to surf these waters. I would like to help and share a few things I've learned in my travels through Tickville. The most important thing is to have a good doctor. LLMD's or Lyme Literate Medical Doctors are your best bet for regaining your health. They treat lots of patients and are more experienced with the multitude of strange symptoms we have.
You will also need to do some things for yourself.
You need to rest. Rest. Rest. I know this is hard, people have lives and obligations - but you also have an obligation to yourself. You will not get any better unless you schedule some rest for yourself.
Drinking lots of fluids also helps. Water is best and helps wash out the toxins. Your doctor should also have you on some type of yeast treatment as the antibiotics destroy "good" bacteria along with the "bad."
Speaking of "bad bacteria", the Lyme germs cause a reaction when they die-off. The reaction is called a "herx" [Jarisch-Herxheimer Reaction] and involves pain, swelling and discomfort. Your doctor will advise you the best thing to do when this occurs. Some say to cut back on the antibiotics if the reaction is too severe.
You will also need some type of support group to help you with other questions and to help navigate the troubled waters. You will feel better when you realize you are not alone and that many, many others are in the same boat. There are a few Lyme support groups on the Internet. Lymenet is the best (in my opinion).
Keep a journal. Buy a small daily calendar and write down your symptoms each day. It only takes a moment, but will be very helpful in helping you keep track of when the "flare-ups" occur. This will enable you to have a semi-regular life on the "other days".
Patience. Depending upon how long after you were bitten - before you received treatment, the first few months can be slow going. It may be many days or weeks before you see improvement. Don't despair... It takes a while - but then one day you'll realize - you feel okay. For about five minutes. Then one day, you'll have a good ten minutes. On and on. Eventually, you'll even have an entire "good day". Don't be surprised, though, if the next day - you feel worse than ever. It's a two-steps forward, one step back process.
Lyme Disease can affect any or all organs, including the brain and heart. This is tough to hear - but you need to be aware. If you have symptoms like depression and rage, be sure to mention them to your doctor. Depression needs to be treated along with the Lyme Disease. It is very common. Having such a horrid disease IS depressing. Losing your health is a shock to your system. Some people, although not the majority, also experience rages and suicidal thoughts. Do not go through with these. Realize they are a by-product of the brain swelling. You will be able to see your knees and feet swell--but not your brain. If you have strange impulses, hear voices, act in ways you never have before - let your doctor know. Don't be too embarrassed to mention it. This is NOT YOU - this is your brain on Lyme.
Research and learn about the disease, but always listen to your own instincts also. Friends and family usually have a hard time understanding how you can look perfectly normal but feel so horrible. They may say it's all in your head. It is. It's in your head, your heart, your internal organs, your joints and your muscles. And it moves. It travels throughout your body. This is good and this is bad. It's bad because it's extremely painful and confusing. It's good because just when you think you can't take it anymore--it moves to another area to torture you there. It can affect your elbow in the morning, and move to your knee by the afternoon. This is another reason why other doctors don't understand the disease. But this is also another "red-flag" indicating you have Lyme.
Take some time and discover things you can do to treat yourself when you are feeling bad. Books, movies, hobbies, hot baths, inspiring and uplifting friends, calming music, etc. Have them ready. Then when the bad times hit - you'll be prepared. It's lonely at 3AM when you're plagued with insomnia. Have something to help you. And insomnia and bad dreams are very common. Also, light sensitivity, sound sensitivity and being extremely sensitive to "everything" is common. Hang dark curtains up on your windows if you have trouble with "early awakening". Leave the harsh chemicals in the closet and clean with vinegar and baking soda. Listen to your body.
Avoid stress and stressful situations as much as humanly possible. Stress aggravates
Lyme and also weakens your immune system.
Take care of yourself and I hope you feel better soon. Please come and visit me and my friends at www.lymenet.org <http://www.lymenet.org> in the flash discussion section.
Yours in Healing and Harmony,
Chaz