Topic: The top 10 things most important to know about lyme tx
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
How about all of you old-timers compiling a list like that for newbies like myself, maybe to add in the newbie links?
I'm reading through everything on the board and it is a lot. It might help newbie neuro-lymies like myself a lot to see right up front and first information that is critical, that might otherwise be overlooked or forgotten in the flood of info coming at the same time as coming to terms with being chronically ill, dealing with multiple meds, for some of us, for the first time ever.
One example- I sure wish I had known from the first day of antibots on that it would be increasingly impossible to sort how what is same old lyme from herxing from meds, etc. That the road was not just bumpy but very unpredictable.
Another- That it matters when you take probiotocs, and what amt of latter is bare-minimum absolutely necessary? And geez, by all means quit eating sugar.
Anyone else think this would be useful? I know I'll be grateful to read what those with a longer perspective think most important about the path to healing.
thanks- newbie Julie
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Well I can tell you the things that have helped me so far (I still have a long way to go though)- of course that doesnt mean they are necessarilly going to work for anyone else.
- Eat right. Aviod junk food as much as humanly possible. I personally dont follow the real strict yeast diet... but I try not to eat unhealthy foods (or anything with aspartme (sp?) in it)
- Drink water.
- Find a good llmd that listens.
- Be observant of your symptoms to determine what makes you feel better and what makes you feel worse. Identify the limits that your symptoms have imposed and try to finds ways of functioning despite them.
Just be observant about your symptoms in general I have found over time it makes it MUCH easier to determine when I am herxing, when I am just getting worse and when I have yeast. I personally believe that in a certain way it is a little easier for me to figure out than any dr becuase I am expereincing it.
- Always have hope.
- Try to avoid stress (this is impossible sometimes) but at least try not to sweat the small stuff.
- Ignore or get rid of any toxic people in your life AND find supportive ones.
- Get tested/treated for coinfections. If your llmd does not believe in them or treat them, I really wouldnt consider them a llmd.
- Find out possible side effects for any new med you start. Unfortunately reactions to meds can make things even more confusing.
- I have used a combination of ABX and supplements. Although I believe it is the abx that is making me feel better.... Many of the supplements I take combat the neg effects of the abx on the body. (I ALWAYS check with my llmd before I start any supplement.)
- Be as active as I physically can. At times this meant I had to hold onto the walls to get from the couch to the bathroom. I am still not to the point where I can exercise but I do what I can when I can.
- Cut yourself some slack. Remember that you are ill and just because you couldn't do whatever you are NOT lazy, dumb etc. Dont define yourself by the illness. (This can be a hard thing)
- I am very grateful for the cats that have been in my life through my 19 years of this illnes especially the past 6 years that I have been disabled by it. They love you unconditionally and they are so forgiving towards my faults especially the ones created by lyme. They have been like little fury angels.
I am not quite sure if this is what you wanted but this is what has helped me.
7. Keep a diary of symptoms and meds. That way you will be better able to figure out "what is causing what!"
8. Look for healthy supplements to boost your immune system and decrease inflammation.
9. Light exercise or walking when possible.
10. Tap into your higher power and maintain a positive attitude!!!
11. READ, READ, READ about Lyme and coinfections!
12. BE YOUR OWN BEST HEALTH CARE ADVOCATE!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Excellent points from both of you.
Tutu, you've done it again...short & concise! I missed your last 2 points when I first read this; they would have been what I would have said also.
* PRAY TO GOD or whoever you believe in to get you thru this all.
* Having a supportive spouse/significant other to love you unconditionally, and a shoulder to cry on when necessary.
* Don't feel guilty about anything; we didn't ask for this disease that has robbed us of so much. BE NICE TO YOURSELF. Accept help from others. Bettyg
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quote:Originally posted by bettyg: Tutu, you've done it again...short & concise! I missed your last 2 points when I first read this; they would have been what I would have said also.
That's because they weren't there the first time!! I edited to add them!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
For me, things I wish I'd known at the beginning are:
-- get a good LLMD, not just a doctor who claims to be a Lyme expert.
-- Rest. Rest. Rest.
-- Do as much as you can but don't push it. This is a disease that tends to push back, and I have paid for it when I've overextended.
-- I agree heartily about keeping track of symptoms. To me, that's helped me measure my progress, track my herx patterns. It's also been a good tool for my LLMD. There's a really good symptom chart that can be printed here: http://www.lymepa.org/html/ldasepa_useful_information.html
-- I think supplements are important, but I also think the quality of some of them really matters -- not everything but some things. I tried to find the highest quality probiotic I could find. Same with cats claw.
-- Take your medicines and supplements daily (or in my case several times a day). I've got a big old pill container I've labelled to keep track of it all.
-- Try to get the best care you can. In my case, it's meant raiding my retirement account, borrowing, taking a second mortgage, incurring debt. Getting past this has been my top priority.
-- Try to think positively, which can be hard, because depression tends to be a common Lyme symptom. Remember you have Lyme disease; you aren't Lyme Disease.
-- Pray, meditate, chant, do whatever gets you in touch with some spiritual something.
-- Learn as much about Lyme Disease as you can. Too's right: we've got to become our own best advocates. Know, too, that while this is a scary disease, a LOT of people do get beyond it and go on to live full, productive lives. There's no reason you can't be one of them! Few things are more powerful than hope.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Here's my survival list. Hope it helps:
Never lose hope.
where there's life there is hope.
Never give up and never give in.
Keep fightening as long as there is breath in your body.
In the end, Life is so worth the fight.
It is always darkest before the dawn
Find your inner strength and hang on to it for dear life
Stay positive. Make a list of the good things left in your life-
Keep on charging the enemy so long as there is life
Take it one day or minute at a time
Tommorow may be a better day
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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