posted
I would hate to lose the search function on this site. It's been my go-to place for answers to many issues that come up.
After all this time, I still have a changing situation, even though I'm feeling better than I did for years.
I don't come often, don't think of myself as an old timer, but rely on this site and would hate to see it disappear.
Dare I hope that less are coming here because there is more help for the masses who still get LD every year?
Many long time supporters who have helped me greatly are no longer around, but their help is available with search.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I think people stopped coming here because it was turning into a political forum.
I almost quit coming here too.
Seems like most are going elsewhere to sites that are like how Lymenet used to be.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi daisys
LymeNet's search engine ROCKS!
There is no other website ANYWHERE that offers first-hand experiences of Lyme patients that is also assessable with ease. It's invaluable and must be preserved đź’š
Posts: 3221 | From Florida | Registered: Nov 2016
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
I will always come back here it is home.I am proud of being member 18.I was one of the first to get lyme,and at a national park complete with a dept of agriculture lab in it. Mammoth cave park KY..
Akinwlf I never saw political things on here if i tried they vanished,but i was careful not to do that anyway.But i was not here a lot sometimes. MADDOG
Posts: 4085 | From Ohio | Registered: Oct 2000
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posted
Keep it going. Most are on FB now. We need to recruit them here. You can follow your contacts & searches.
Posts: 580 | From southern new jersey | Registered: May 2003
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Marie good idea, post a link on Face book to here. MADDOG
Posts: 4085 | From Ohio | Registered: Oct 2000
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posted
I found a reddit community that is pretty active. Maybe that is where people are going.
Posts: 854 | From Somewhere | Registered: Nov 2010
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posted
I think we should keep it going because sometimes we want to refer people here to find Lyme docs, as well as any other discussions.
Posts: 13171 | From San Francisco | Registered: May 2006
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
That Lymenet story is GREAT. Thanks Bonnie.Would like to see it updated.
Posts: 4085 | From Ohio | Registered: Oct 2000
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
You learn something new every day. I never knew the story behind this site but I am grateful that it was created and that I was lucky enough to find it. I'm not sure I would have survived without the knowledge and information that is available and shared here!
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
Lyme has NOT run its course! Still very much happening. I think a lot of people are on facebook now.
Well, we're still here and can chat.
Posts: 13171 | From San Francisco | Registered: May 2006
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Recently, I have been clicking on the "LymeNet Flash Recent Visitors" button to get an idea of how many people are visiting the site and what topics they're searching.
If I am interpreting this correctly, there seems to be a number of people visiting, just not posting or creating new topics frequently. (For example, there was a record number of 1133 visitors recorded on May 30, 2024.)
Unfortunately, it also appears that people may be looking at older topics/posts (and potentially outdated information). I'm wondering if these are quick searches that people make but abandon just as quickly when they check the dates.
Robin and Hiker, am I interpreting this info correctly?
Posts: 2083 | From Earth | Registered: Jul 2013
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Thanks BB for posting the info on how Lymenet was created.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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posted
Phoiph, I think you are interpreting the data correctly.
We do seem to be getting a few new posters lately and I am glad as this is a great forum to help others.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10235 | From Illinois | Registered: Aug 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
hi!! I hope this place never "closes" . tried and true it is.
I have been away from online things for a while. I was feeling ok, but. then another brain or spine (mild-ish) injury and I forget so many good things. I have been feeling pretrty ok with tick diseases, I thought, but now started w new wellness center and the symptoms , herxeimers, are strong and extremely unpleasant.
I feel like my istuation will never get better and all I. do is get older, haha. but on ly list of TODOS is to one day come back to lymenet and read all my old posts and questions, etc!
I hope everyone is ok.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi Gang I am back in the pain pit. The lyme in my low spine ate the little bones in there.
I live with the disability every day.
I can deal with it a lot of the time.
I have been to the best mayfieldclinic.com
Nothing can be done . It gets ok with phth and needleing .
Well i was on Gabepentin for years it added to the brain fog.
GANG I wrecked my truck and got my back all hurting again.
Then I started fixing it and moved a new door around and made it worse. It is on there!!!!! GRRRRRRRRRRRR
MADDOG
Posts: 4085 | From Ohio | Registered: Oct 2000
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"God is light. In Him there is no darkness." 1John 1:5 Posts: 10235 | From Illinois | Registered: Aug 2004
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Oh no MD! Speaking from experience here maybe take it easy and ice the area. I use Voltaren cream on my elbow and shoulder and it seems to help.
Hope you get better soon! Pain can just wear you out!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
hi!! I hope this place never "closes" . tried and true it is.
I have been away from online things for a while. I was feeling ok, but. then another brain or spine (mild-ish) injury and I forget so many good things. I have been feeling pretrty ok with tick diseases, I thought, but now started w new wellness center and the symptoms , herxeimers, are strong and extremely unpleasant.
I feel like my istuation will never get better and all I. do is get older, haha. but on ly list of TODOS is to one day come back to lymenet and read all my old posts and questions, etc!
I hope everyone is ok.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
not sure why my post snet twice, but a got an"flood warning" with is saying admin put this into action...???
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
MADDOG, so sorry tohear about your spine! I have same issue , so I am told , in lumbar. it doesn't hurt i na terrible way for me but always tender to the touch.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
My PCP took me off the Gabepentin thinking it was the cause of my brain fog.I told him about Lyme brain fog.He did not listen.
Disaster!! Now i am touretting 5 times worse and about every joint i have is screaming at me OUCH.
I had to go to my PH TH and get my back needled ,then to my pain doctor for 10 times worse stuff than Gabepentin.
Still every time there is a day above 35 degrees and not snowing I work on the truck. Step one done all metal structural parts pushed back to factory places with porta. power hydraulic press backed up by giant walnut tree.
Have a new bedside to install,and a cab corner.Mountain climbers can never give up it is a DNA thing.
A new PCP may put me back on the Gabepentin????
MADDOG
Posts: 4085 | From Ohio | Registered: Oct 2000
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posted
Hi from Sylvie, over the big pond! I was here for the first time in December 1998... This is my third account, I have lost the two others. Reading your posts, I thought that I would love to get out of everlasting pain, but I have stopped believing that it is possible. I am used by all this sufferance. When I popped on this board, I was full of hope, but my hope is gone. There is a "Lyme specialized service" in a hospital some miles away from me, they are on the internet, and what do you read? They are making research about Lyme... what research??? I almost died in 1993 in another hospital testing medications published in the Lancet as very promising... almost deadly for me. I can tell exactly what antibiotics can help me, no research needed, but no one hears. I am fed up with the way we are (not) considered, with MDs who don't know what really is this disease, and judge me, even one had the nerves to expertise me, who had never seen an actual Lymie in his life! We are the guinea pigs in something that countries don't want to recognize, because it would cost them too much money if every Lymie would be treated correctly. Borrelias have been grown up in ticks for military purposes since WWII and escaped, and make sick the populations. This is something nobody will recognize, never. Too disgusting and too expensive to cure. The only thing we can do is exchange our little recipes to get better... Take care all of you, I am glad to still be in touch with you and Lymenet :-)
Posts: 6 | From Paris, France | Registered: Oct 2023
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posted
Sylvie,—Sorry you still deal with all of this.
Wishing you the best.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10235 | From Illinois | Registered: Aug 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by MADDOG:
Now i am touretting 5 times worse and about every joint i have is screaming at me OUCH.
Maddog, so sorry to hear you're doing worse. Magnesium will help reduce the Tourette Syndrome. Have you been taking fish oil? The Omega 3's will help some of your symptoms.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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