My friend is visiting me today so that I can introduce her to Lymenet. She has had Lyme for several years, but has only been treated through a GP. Over the holidays last year, I got her ear at a party and began to explain to her why she may not be getting better.
To make a long story short, her GP referred her to and Infectious Disease Duck last week. After passing his finger in front of her eyes several times, he made the all too familiar statement that everything she has been feeling is all in her head, that she is making it all up.
She has a CDC positive WB, that has been repeated several times over the years and still is positive both IGG and IGM positive.
So.......what are your TOP TEN suggestions when you have the defining moment that you are going to take control of your own health and log on to Lymenet to seek answers and manage your Lyme/Co-infections??
Here is a start....but I need your input!!
1. Go to "Seeking a Doctor" Forum, post and make an appt. with a recommended LLMD.
2. Print out Dr. Burrascano's Treatment Guidelines. (Read this over and over). Use to ask questions with LLMD about abx dosages, etc.
3. Read information on understanding the Western Blot.
4. Read, Read, Read information in the Newbie Link
This is where I need some advise. What articles are most important in the first stages of a new Lymenet member???
I appreciate your help. And I am honored to be able to provide this help to someone in need.
Lymedesign.
Posts: 263 | From Georgia | Registered: Feb 2006
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My piece of adice is to start writing down all symptoms since illness began. Then a day to day journal would be good.
Also, as she is learning info she should write down important questions she wants answers to from her LLMD. It's always best to have questions ready or else you will forget so much on your first appt.
Good luck to your friend. kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
It is impossible to understand all of this at first, or in my case, probably ever..It is so complicated, so I would recommend that she do as suggested, read and read some more.
It is a good idea to try to understand about all of the co-infections, and perhaps even how to detox. Knowing about pro-biotics is also important.
And perhaps she needs to read a bit about the political issues that surround this because she may have to deal with more ducks.
I also think she needs to understand that no one protocol is great for everyone. Some can't tolerate some of the meds and even may have an allergic reaction. Also some have complications with IV meds.
There are many protocols and to not consider one the win-all method. Be flexible and even consider alternatives but to research every step.
And find some good friends to offer support no matter what the situation.
AND to try to understand that most on Lymenet are wonderful caring and giving people but with diseases some of the members can reach a certain point or be having a bad day and might make a reply that may seem to be mean. I think it is often unintentional but it happens. Bad days and mistakes can happen to the best of us.
Posts: 2360 | From SE PA | Registered: Mar 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Here's my top 10. I couldn't cover everything but tried to list what has been important to me:
1) read everything you can get your hands on on TBI's including the "newbie links in medical.
2) find a LLMD asap & start treatment.
3) keep a daily log of all symptoms & try to have copy's of all your medical records
4) Don't waist your time & money running around from duck specialist to duck specialist...all that leads to is more absuse & frustration..stick to a good LLMD.
5) eliminate all suagrs & alcohol from your diet and try to eate only natural healthy foods
6) try to keep positive & surround yourself with psoitvie people. Good support & a hopeful attitude is key.
7) I know this is a hard one but try to eliminate as much stress from your life as possible. Yoga, meditation, listening to peaceful music ect.. anything that brings your stress down is good.
8) Buy good mulit strain probiotics that need refrigeration. Keeping your good flora up is so important.
9) Never give up & never give in
10) Read read read everything you can. be educated in all that you can read on lyme, co-infections, suppluments, diet ect.. If you don't know the facts you will be more lost.
hope this helps
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
PS lymedesign....your PM box is full!
Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
lymedesign, when you get your mail box empty, please PM me, and i'll send you my newbie links/advise...55 pages.
things to look for in there are:
1. preparing for FIRST LLMD visit.
2. have her print out long 125+ symptoms list and mark those pertaining to her.
3. have her print out LYMEDAD'S LETTER TO FAMILY/FRIENDS and DAR'S "TOY" STORY .... the how you look good but what's going on inside you!
4. has she had to quit or next to being fired from her job due to lyme issues; check out the last 25+ pages good on filing for SSDI, disability insurance benefits.
5. KNOWLEDGE IS POWER! read, read, read.
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My mailbox should be empty now, or should I say cleaned up a bit.
Thank you to everyone, your messages got here in time and were very helpful. You showed a warm welcome and it was a nice way for me to show her how to navigate around the site with a personal touch.
Can't say enough about the people here on Lymenet.
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
Keep an open mind as there isn't one treatment that works for everyone. there is no right or wrong for treatment but only what is right for the individual.
Posts: 547 | From Maryland | Registered: Mar 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I only wanted to add one thing.
Sign up for Lymenet.....
I have found my best information and support here.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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