tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I was just thinking, I wonder how many people that use to be on LymeNet have actually gotten better and don't come on here anymore and how many are "no longer with us". There's really no way to know....
Posts: 2541 | From Northeast | Registered: Jan 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Hopefully a whole lot! I know when I felt well, which actually has happened, I was rarely on here. I was living my life.
Just have to add I really appreciate those of you who do come back to encourage the rest of us. When I am well, If I am ever well, I will try to be as thoughtful.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I think it's a splendid thought. Not morbid at all. People out there, living life. It happens. What a grand wish for everyone.
Laura, though, I sense the morbid feeling from this is that you might feel abandoned or afraid you'll miss out on the key to success. There is a vast amount of research and a great number of books for those wanting to learn more.
Here's one place to here from those who are out living their lives after battling lyme + co. ------------------
SUCCESS STORIES -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think the morbid part meant that people were dead... Is that correct?
I don't know. Maybe people just get sick of trying to get well & make the best of it. It would be interesting to know what percentage really do get well & no longer need the support of Lymenet.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
And then there are those who are well and are still here!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96233 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I think in some cases people stay away from the internet because it can be depressing when people are only posting the negative stuff that is going on.
I have learned a lot from this website. I have made a few good friends here also but I also have had times when I think that I should take some time away and focus on other things.
Posts: 2232 | From USA | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Morbid is a truck load of heads--reported by news today---confiscated to make sure it was going to research....URGGG.
But then I hope it was going to someone doing Alzheimers/Lyme research...Which would be great!!!!
I am a lot better but still here hoping to pay it forward in some small way.
And be a part of history in the making...
I would like to believe we all do what we can with what we have.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Yea, CVS is collecting a dollar for Lou Gehrig's Disease at checkout.
I wanted to say "LG is a symptom, but Lyme is the main cause...why don't you collect a dollar for lyme disease instead. Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
sparkle, yes that's what I meant sad to say. Hoping those no longer on here are doing well and not the other thing.
Posts: 2541 | From Northeast | Registered: Jan 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's kind of weird to see people come & go from here. Some are "old timers", some stay around to get what they need & leave. some visit on & off.
I do think alot of people get better. It's nice to see people stick around a bit to help those just being diagnosed. I've gotten to feel some of the people here are my friends.
I've learned alot from the people who post here. I like to share what I can. I've been ill for about 15 years. It wasn't always a Lyme diagnosis. 8 years prior, I had CFS. I was able to get completely well from having CFS.
I'm doing OK but I'm not cured. I'm not 100% sure that I have Lyme. I've made alot of progress recently with artemesia. Hopefully, one day I will be well. We just have to try to do the best we can on a day to day basis.
It's nice to know there are people here who understand & share their experiences. It's OK if people go off & forget about Lymenet. I don't think most people leave due to death. There are a few deaths that I hear about from Lyme but mostly people learn to live with the illness or get somewhat better.
Some do get completely better, too.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
It won't tell you which ones were members here but they are trying to document lyme patients who have died.
Suicide is a big risk for lyme patients. We've had a few die that we know of that were members here but I've no doubt that many who don't post anymore are out living their lives.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by MariaA: Congratulations! please post a story in Success Stories if you feel like it's appropriate!
Would 80% be considered a success? I do plan on working on the remaining 20% once I get the motivation again.
Posts: 8 | From Doing much better | Registered: Jun 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Suicide is sad and horrible, but I agree a big risk for Lyme patients. And sad to say I can understand. I would never do it because of my girls-I know it would devestate them and I wouldn't ever do that to them.
Hopefully most are just out living their lives. I think some just leave because they are tired about hearing about Lyme and everything else ALL the time.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Im doing better but Im not %100, prob never be.
My approach was off all anti biotics, sterele diet and 1 hour of exercise each day!
Posts: 2905 | From New England | Registered: Sep 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Just a reminder to everyone that we have Lyme Chat live every night...and that we have had many desperate people turn to Chat as a supportive environment and place to find others in a similar situation, to talk to, live, and have found it comforting.
It technically starts at 8 pm, but lately the trend has been people have been coming in very late. It keeps going until about 3 or 4 am, Eastern time. You will find it busiest around 1 am, generally.
And there is also a direct link which hopefully someone will come along and post, as I can't find it on this computer. You do need to set up a user name and password first if you don't have one, which you can do by emailing [email protected].
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I was diagnosed with Lyme June 1. In third week of Doxy. Scared to death the more I read. I have been dx with Bi-Polar, Lupus, Fibromyalgia, Chronic Fatigue, IBS, Diverticulosis, Spastic Colon......I cannot even remember them all. Now Lyme, late state. CAN I get better? Am I going to die? I feel like I am going crazy. Cannot remember, cannot think, confused, stiff neck, always nausea, achy joints, HEADACHES. If I find a LLMD what are they going to do to me?
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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Remember to Smile
Unregistered
posted
quote:Originally posted by Tracy9: Chat live every night... place to find others in a similar situation, to talk to, live [snip]
All are welcome! Except Matt.
Today, i am thankful i am not Matt. I pray for Matt, 'though. Smile
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Consuelachacha - every journey begins with the first step. Just take it one step at a time. It's not easy but I think you will be able to get through it.
Many of us find different ways to get well. Some use the antibiotics & others prefer herbs & more natural treatments. Some combine the two.
Sometimes, the only way out is through...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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