Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
Advice for new Lyme patients
One: A thing that I have found important is to keep a diary of symptoms and temperature readouts. I suggest using a scale of 1-10 to base the severity of symptoms. For instance for pain a 9 would be a severely broken bone. A diary like this should be able to help your doctor determine how treatment is going.
Two: Know your limitations and respect them. Do not overdo or try to rush to complete something. Take breaks, even if you don't feel you need them. The more you overexert yourself the more you will hurt the next day. Do whatever you can do, but not to much of it.
Three: Exercise however you can. If you are bed bound then try lifting your arms several times and repeat throughout the days. Even the most minimal of movement will help blood flow and keep muscle tone.
Four: Attitude is very important. Just because other people have been treated for years, and are still are on treatment, does not mean you will be too. Keep an open mind, dont let yourself get into a blue funk thinking that well if s/he has been on treatment for so long what's that mean for me?. There are many circumstances that vary from patient to patient, to many to be able to predict treatment length or even what antibiotics will work.
Five: Knowledge is the key. The only stupid question is the one unasked. Do research on what your doctor is prescribing, do research on various exercises. Keep looking and talking to people to find out what helped them.
Six: Doctors are important, if your doctor is saying you'll be cured after 30-90 days of treatment, and that any symptoms after that are post Lyme syndrome it is time for a new one. Find a doctor who is willing to help guide you through things, one that will treat you until the symptoms from the disease are gone. Something that has to be said: A test is a tool. The tests for Lyme are too inaccurate to be used alone to determine an infection. Just because you come up negative does not mean you have it, and the reverse is also true. A good doctor will use the test results as a guide, not as definitive proof.
Seven: Set aside some time for yourself. Find something that you can get into, be it watching tv reading or such. Get out of your mindset for even a little while. Take your mind off of things, constantly thinking about it won't help and actually hurts you. Meditation may also help.
Eight: Don't be afraid to ask for help. If you need to talk, to vent or anything there are plenty of people around who are willing to talk to you. Don't be stupid and keep it all inside, that only hurts you in the end.
Nine: Get out of the house. Even if you don't feel like it just go out in the yard or the sun, or go to a coffee house or a book store. Just a change of scenery.
These are some of the things that I've found over the years can help you with a battle against Lyme Disease. Remember that no two cases are alike, just like no two people are exactly alike.
Best of luck, and feel well
Scott, 8 years on treatment and counting
One: A thing that I have found important is to keep a diary of symptoms and temperature readouts. I suggest using a scale of 1-10 to base the severity of symptoms. For instance for pain a 9 would be a severely broken bone. A diary like this should be able to help your doctor determine how treatment is going.
Two: Know your limitations and respect them. Do not overdo or try to rush to complete something. Take breaks, even if you don't feel you need them. The more you overexert yourself the more you will hurt the next day. Do whatever you can do, but not to much of it.
Three: Exercise however you can. If you are bed bound then try lifting your arms several times and repeat throughout the days. Even the most minimal of movement will help blood flow and keep muscle tone.
Four: Attitude is very important. Just because other people have been treated for years, and are still are on treatment, does not mean you will be too. Keep an open mind, dont let yourself get into a blue funk thinking that well if s/he has been on treatment for so long what's that mean for me?. There are many circumstances that vary from patient to patient, to many to be able to predict treatment length or even what antibiotics will work.
Five: Knowledge is the key. The only stupid question is the one unasked. Do research on what your doctor is prescribing, do research on various exercises. Keep looking and talking to people to find out what helped them.
Six: Doctors are important, if your doctor is saying you'll be cured after 30-90 days of treatment, and that any symptoms after that are post Lyme syndrome it is time for a new one. Find a doctor who is willing to help guide you through things, one that will treat you until the symptoms from the disease are gone. Something that has to be said: A test is a tool. The tests for Lyme are too inaccurate to be used alone to determine an infection. Just because you come up negative does not mean you have it, and the reverse is also true. A good doctor will use the test results as a guide, not as definitive proof.
Seven: Set aside some time for yourself. Find something that you can get into, be it watching tv reading or such. Get out of your mindset for even a little while. Take your mind off of things, constantly thinking about it won't help and actually hurts you. Meditation may also help.
Eight: Don't be afraid to ask for help. If you need to talk, to vent or anything there are plenty of people around who are willing to talk to you. Don't be stupid and keep it all inside, that only hurts you in the end.
Nine: Get out of the house. Even if you don't feel like it just go out in the yard or the sun, or go to a coffee house or a book store. Just a change of scenery.
These are some of the things that I've found over the years can help you with a battle against Lyme Disease. Remember that no two cases are alike, just like no two people are exactly alike.
Best of luck, and feel well
Scott, 8 years on treatment and counting
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I would add prayer. For yourself, for your doctors guidance for your family who struggles along with you.
I also use visualization (especially when I fee l really sick. it is hard to be positive then so I focus my anger and agression inward on the bacteria. If anyone has seen Kill Bill. it has incredible fight scenes. take your anger and frustration out on the bb bacteria.
Remember - herxing is part of the road to winning.
You give very good advice--spoken from someone who has definitely been there.
How long were you sick before getting diagnosed? Are you getting treated by a Lyme doctor?
Were you tested for the co-infections Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? This is very important. Many people who have Lyme are co-infected. It may affect treatment choice and progress.
What meds are you taking?
It is important to learn as much as possible. You may be familiar with the following: I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
I am also sorry that you have Babesiosis. It can be a doozy! I had a severe case of it, but I have finally beaten it. You can too!
Hang in there okay?