posted
A number of lyme people have done this. The general reaction is hostility and some have been kicked off those forums.
But you can try if you like.
Posts: 8430 | From Not available | Registered: Oct 2000
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Oh I see. I figured.
I just have good intentions but don't know if I can handle "rejection" too well right now, I might start bawling my emotions are so unstable.
I have a good friend who knows that I am trying to fight lyme and her sister has been diagnosed with MS about a year ago and she is not doing well.
I did mention casually to her if they ruled out lyme and she said yes they went to the top neurologist in Boston and she has legions on her brain MRI.
But don't we have similar legions too if we have them? I don't expect my friend to know that a "top neurologist" means nothing to me anymore but they did suspect lyme for awhile for her so I'm not sure what to think.
I'm sure she doesn't want to go through seeing a LLMD now anyhow.
She has a daughter who is almost 1 yrs old who is healthy to my knowledge. But it will break my heart if I hear through my friend that her niece is sick. Let's just hope that is not going to be the case.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'd get myself better first than worry about helping/educating others.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Ha, ha. I love legions on the brain. Presumably legions of spirochetes!
Posts: 8430 | From Not available | Registered: Oct 2000
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onbam
Unregistered
posted
Definitely go for it (if you think you can handle it)...incidentally, I've posted about this there a few time, with no ill effects. One post even got "liked." Just don't be dogmatic and realize that all you can do is lead a horse to water in this case. My tone has always been "just putting this out there..."
There should be a campaign, in fact, to systematically do this on the boards for ALS, Lupus, Alzheimer's, etc.
you could send them links to lymecryme.com underourskin.com, undertheeightball.com, etc. Since they may not remember tickbites, I've been sending them the threads on transmission.
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I do believe in the power of suggestion though, so I think you should do it.
Be a Lyme "mentalist", if you know what I mean.
you never know who might read it who is wanting some type of hope!
Look at how quickly they all jumped on the "liberation treatment" band wagon.
I think it is a good treatment but only for a little while. It is definetly not a cure.
I even sent emails to one of the doctor's who first discovered the liberation treatment. I begged him to study Lyme and it's relationship to Ms and MS patients. HE said he wasn't interested in that part of science , he was just interested in studying something about the brain now.
He could be someone that could have a big impact.
Whenever you can, just go to the top.
If those doctors were willing to risk their careers by promoting their "liberation" treatment, then maybe they would study to see if these MS patients really have Lyme disease.
I know one doctor made this discovery because he really wanted to help his wife who has Lyme disease.
Curious enough , both of them have really strange symptoms. The doctor is disabled in some way, but he continues to research and have a career, his disability does limit him.
What if he actually has Lyme disease? Wow!
His name is Dr. Zamboni.
Why don't we all write him? or send him emails.
I forget the name of the other doctor who wasn't really interested, but I do have his email , if you want to email him as well. I found the email easily enough, I think it was in our local newspaper.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BRAIN LESIONS are common with lyme, yes.
When you post on Facebook, be sure your boss can't find you or your posts. You have to remember that bosses regularly check social networks to see what employees are up to.
And, for the future, if your real name is anywhere on Facebook, any prospective employers may see more about you than you'd like. It's best to NEVER USE YOUR REAL NAME or any identifying information.
If you do post, I think it is best to just give a few links and let it go. Give them the expert articles and leave it at that.
You talk about the emotions of rejection with post on Facebook right now. That's really counterproductive. I think it's best to stay away from energy-sucking situations that are stressful when we have so much other stuff we need to do to take care of ourselves. Your first priority is to your own health. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Basic lyme links to share: ------------------
California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Maybe I will create a Facebook account with no real name or photo. When I have more energy though.
Yes I agree - I have to put my health first.
I guess when I was searching for stuff about head pain, I stumbled upon that and the symptoms they were all complaining about on their discussion board hit a nerve w me so I felt an impulse to help.
But the way I am trying to spread this knowledge is when friends call or email me to see how I'm doing - I give them the underourskin website and urge them to see it.. also tell them that Igenex lab is the only way to go. i'm hoping that they will pass on to other people and then so on and so on..
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In the last link above is the Cpn site. Cpn can also cause "MS" - so it's not just lyme so you may do better with a basic mention of "stealth infections" that includes lyme, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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