TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I'm wondering why there has been such a great loss of interest in LymeNet in recent years -- if anyone has any thoughts about this?
I'm asking because the same thing is happening in our TxLyme Yahoo forum, too -- and I suspect that it's probably happening in other state Yahoo groups, also.
One possibility might be that FaceBook groups are more popular now with folks who get their news via cell phones, but I'm just guessing.
Or perhaps it's that there are so many good books out now about Lyme disease written by LLMDs which simply weren't available just a few short years ago.
Any ideas, anyone?
Posts: 4563 | From TX | Registered: Sep 2002
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Lymenet SAVED my life. I will be forever grateful ! Thank you from the bottom of my heart ❤️
Local area support groups are lifesavers too. They save so many lives. And Facebook groups are superior for those who can't travel or value their privacy.
I don't have a Facebook account or a Yahoo account but I still need help and want to offer help. Hence, I'm on lymenet ALOT.
P.S. I forgot, just because members don't post, doesn't mean they're not on Lyment website.
Posts: 2977 | From Florida | Registered: Nov 2016
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Maybe people are getting more info off the internet and YouTube now.
I've been on Lymenet since 2004 when I was diagnosed. I check this website before any other social media.
I'm addicted to Lymenet and would like to know how others were able to wean off.
Is going cold turkey a better alternative?
Just kidding....sorta.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6137 | From Columbus, GA | Registered: Jul 2004
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I'm on LymeNet infrequently now because I don't have enough spare time for it anymore, but I come here whenever looking for answers to questions which arise in our TxLyme Yahoo group which I can't answer.
The Lyme member in our family celebrated her tenth year of recovery, after several decades of undiagnosed Lyme disease, so it's not as important to me personally anymore now -- except for trying to find answers for our Texas Lyme patients occasionally since I help to co-moderate our state group.
The biggest factor in the recovery of our family's Lyme patient was recognizing the importance of a strict gluten free diet. I suspect that connection between these two conditions (Lyme and gluten intolerance/sensitivity) is "leaky gut" which is triggered, IMO, by toxins which result from Bb.
According to the celiac literature, once celiac has been triggered, it never goes away completely -- or at least that's my understanding, which is borne out by our family's experience.
The brain fog and depression seem to be characteristics of both conditions also because these symptoms reappear anytime that there has been an accidental exposure to gluten.
Back to the original question though, I'm guessing that all of the outstanding new books on Lyme by LLMDs -- especially the books by Richard Horowitz, MD and by Niel Nathan, MD and by Marty Ross, MD -- provide so many helpful answers that folks don't feel the desperate need for on-line support groups anymore like they used to do.
Posts: 4563 | From TX | Registered: Sep 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
There are now Lyme support groups from coast to coast. There is also private FB groups on line for the majority of these groups.
If anyone hasn't checked the web for Lyme support groups in your city, state, you will be surprised how much support is out there.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
I have been here since LymeNet started in 1991.
I know people have access to a lot of other info sources, but this general support - and all of the boards here- are invaluable.
I know lots of people show up here because they know all kinds of good info and support are here. Priceless!
Please donate to Lymenet to keep it here for us.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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posted
Hopefully, maybe some people have recovered. I'm on Lymenet sometimes but I don't post much—I have mostly got rid of my Lyme symptoms after 10+ years of being sick.
Lymenet, other support groups, and different people who were knowledgeable about Lyme treatments have really helped me a lot.
Any kind of social media can become addicting, but what I've found especially helpful is having people I can talk to in person who understand what I'm going through. Those people are really hard to find, though.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
I am so glad you are feeling better! I'm sure you know people who would like to meet with real people who have tick-borne diseases.
If you check out "Support Groups" in the upper left menu, maybe you can find a group that meets near you or someone you know.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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posted
Maybe because there are a lot of facebook Lyme groups now. I still think this is an invaluable site for everyone!
Posts: 13116 | From San Francisco | Registered: May 2006
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
I just didn't get here as often after Charlie died.
He was a very good friend.
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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posted
I think they are all on Facebook. Lots of groups there. We are still important to the Lyme community though!!
Some people don't like FB.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Why? Because for over the decade I’ve been here (different user names due to school district issues and threat of my child being taken away from us) it’s the same posts over and over and over again. Same ineffective treatment options, same nonsense about protecting doctors we’ve gone into debt paying, same old $hit day after day, year after year. Zero recognition of Dearborn and it’s disastrous consequences for those afflicted. Lots of lecturing about the latest and greatest options and if you could/would just try a, b, c you might just get better.
There is no cure-this crap stays in your body and I’m an optimist. It triggers horrific autoimmune and other diseases which is what my grown children now deal with. After being here for many years, I feel I wasted so much time, effort and energy on a whole lot of nonsense. .
Posts: 1885 | From here | Registered: Jul 2012
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posted
I know what you are saying. Sometimes it seems like it would be better to not bother with treating anything than waste time, money, and effort on what seems like going nowhere.
I've never heard of Dearborn before.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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posted
I hear you, Beaches - we have difficult chronic illnesses. Treatments either help or they don't.
I'm still willing to try remedies, to see if anything will help. Most of the time, no, but once in a while, something does help.
Besides managing what we've got, I do recommend taking get-away time, doing something we enjoy doing, being involved in other pursuits as we can.
Posts: 13116 | From San Francisco | Registered: May 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by beaches: There is no cure-this crap stays in your body and I’m an optimist. It triggers horrific autoimmune and other diseases which is what my grown children now deal with. After being here for many years, I feel I wasted so much time, effort and energy on a whole lot of nonsense. .
Beaches, It's obvious that you haven't been keeping up with the latest research done at Johns Hopkins which shows that a triple antibiotic approach which includes Dapsone to hit the persistent form of Bb is showing great promise in vitro.
If you prefer an natural herbal approach, then there are others who are having good success with liposomal forms of potent herbals to penetrate the biofilms which contribute to persistence of the pathogens involved in Lyme disease. https://www.treatlyme.net/guide/biocidin-antimicrobial-biofilm-breaker
Our daughter celebrated the tenth anniversary of her recovery from late-stage, chronic Lyme disease (complicated by undiagnosed celiac) at the first of this year. She had been ill since early childhood (tick bite in 1973), and there are quite a few success stories from other recovered Lyme patients published here at LymeNet.
Please -- Never, never give up, OK?
Posts: 4563 | From TX | Registered: Sep 2002
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Can't forget about the sucesses of many who are now living their lives and put Lyme disease in the rear view mirror. I hope to be just like them. Posts: 2977 | From Florida | Registered: Nov 2016
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I’ll respond more at some point. But for now just fyi to Tx lyme mom-you make incorrect assumptions. I am johnny-on-the-spot when it comes to the latest/greatest. FYI my daughter was actually ONE OF THE FIRST to get that triple abx combo years ago-yes-years!. It was a HUGE EXPENSIVE FAIL!!! Oh and yep-been there, done that with the herbals, biofilms, liposomal stuff too FOR YEARS. . Happy it all worked out for your daughter. Don’t assume other parents haven’t worked as hard or diligently or as long as you have-perhaps even moreso-my daughter was bit in 2004. The nightmare continues.
This is part of my frustration. If only you did x, y, z....
Posts: 1885 | From here | Registered: Jul 2012
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posted
Forums in general are a dieing breed due to social media these days. Any sport or hobby forum in general just doesn't have the traffic or activity it once did 10 years ago.
My personal opinion is this isn't good, considering these communities are now in control by major corporations on social media these days, which can now be censored or banned if they want to shut someone up.
Also if you're not aware, net neutrality also ended last year after the current regime in power appointed Ajit Pai head as FCC Chairman, who is an ex-lawyer of Verizon. See the conflicts of interest... Just like the IDSA Doctors having conflicts of interest with vaccine and insurance companies.
I think most people in general aren't aware what the hell is going on, despite a huge change in the internet these last 10 years.
Threads like these pop up from time to time because some people take notice...
I'm a webmaster, so I have seen how smaller sites like forums and blogs are getting phased out, while social media and corporate news(Fox or MSNBC) have now become the major websites showing up in search engines.
This is a major problem with monopolies...
This was recently talked about on Joe Rogan's podcast how independent media is basically being stripped from the internet... If you're not aware, sites like LymeNet.org are a form of alternative independent media. https://youtu.be/zLWzL43BdnY
This is a big problem when choices are in the hands of only a few: like government, corporations, big pharma... And they say Chronic Lyme isn't real and fake news. Then they have the decision to strip LymeNet.org from Google's search engine results, because that's what power was given to the goverment/coporations when net neutrality ended. They can basically do anything they want with a website like lymenet.org now, put it in the slow lane while putting a site like the New York Times in the fast lane with articles like these https://www.nytimes.com/2019/06/27/well/live/lyme-disease-children-treatment-diagnosis.html
Scary future if that's where we're headed...
I'm not the webmaster of lymenet.org, but my guess is this forum no long pops up in the top search engine results like it did 10 years ago or gets the ammount of traffic it used to get. This is the common trend with independent sites like these run by average citizens nowadays....
And while I think some of these Facebook groups and lyme pages are ok... I still think they don't compare to a site like LymeNet.org, where posts are made public for people using Google search enginge to find. It was much easier to post a thread trying to find a Lyme Literate Doctor in the Seeking Doctor Catgegory. Overall much easier to use the search box on forums. Much easier to view multiple threads in different catgories. On Facebook there's just one category and everyone posts to it, and you have to scroll constantly to find different posts that you maybe interested in and post questions and comments on.
I personally liked how the internet used to be, what it's turned into now I do not like at all.
It is what it is, there's other problems with the internet too like ad-block, which basically is killing off blogs or sites that run ads like Google Adsense to stay funded and pay for server fees. Some sites still stay active through donation and other means, but it's getting harder and harder for independent sites to stay thriving these days.
And any time YouTube wants, they can bring the hammer down on your favorite channel if it report on something controversial. I don't share the views of Steven Crowder, but his channel was recently stripped of monetization on YouTube. This isn't fair what's going on...
I watch both right and left independent media, even very controversial shows like Coast to Coast AM that talk about really really weird stuff. C2CAM has always reported on Lyme, it would suck if they were banned on YouTube one day... Or just throttled on the internet and Google Search engine. I guess they always have their radio show and membership, but I don't think you can always count on that seeing radio is kind of dieing out and youtube podcasts are taking over... Hence why C2CAM is now very active on YouTube.
I think many of you should take a big concern to what's going on...
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Thanks, Dan. That was very informative. I had no earthly idea about any of this. It's downright scary to think about this level of censorship.
Beaches, I'm so sorry to hear how much trouble your family has had. Have you tried a 100% gluten-free diet?....for a sufficient length of time, not just a few days?
Going strictly gluten free was a really major turning point for us. I had no idea how many supposedly Lyme-related symptoms were related to gluten sensitivity also, especially brain fog and depression, as well as body aches and pains. Unbelievable, actually.
We followed up by doing a relatively cheap ($149) genetic test for celiac which turned out be probably the very best money we have ever spent on anything medically related. (23&Me does NOT test for both celiac genes, only just one of them, so don't be misled by it.)
Many/Most LLMDs put their Lyme patients on GFCF (gluten-free, casein-free) diets. I suspect the connection between gluten sensitivity and neuro-Lyme is "leaky gut" since Bb produces a tiny toxin which interferes with the tight junctions in the GI tract, thereby creating leaky gut.
And I also suspect that Lyme disease triggers celiac in someone who is genetically predisposed to it, thanks to its toxin which triggers leaky gut. To learn more about the Lyme toxin which mimics clostridia toxin, google Sam T. Donta's patent about it.
To learn more about "tight junctions", there's a fantastic color illustration of it in a Scientific American article about celiac by Alessio Fasano who is a celiac expert, but the FREE version of that article is no longer available, unfortunately. This concept is so easy to understand when you can visualize it.
Our experience is that one tiny infraction, usually accidental ingestion of gluten, is enough to trigger symptoms for several days, but which can take up to several weeks to resolve completely. Yes, it's that complicated!
I don't wish this complication on you, but be aware that something as seemingly complex as this might hold the key to achieving your goal of being symptom free and of maintaining your remission because 40% of the American population carries at least one celiac gene. With those odds, celiac is not something to be overlooked as a complicating factor in your family's on-going health issues.
Posts: 4563 | From TX | Registered: Sep 2002
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
TX Lyme Mom, you don’t seem to understand my point. I was not seeking advice-as we have “been there, done that” with every treatment and supplement and type of doctor you can imagine.
We have been strictly GF for years and it certainly has not turned anything around. My dd is DF, has tried mast cell diet and a whole bunch of others. Still sick. I realize your intentions are good, as are everyone else’s. I don’t want or need any advice.
Posts: 1885 | From here | Registered: Jul 2012
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
beaches, I see what you are saying and I do SEE it everywhere. not just here. lost of circles around and around...
I just joined several FB groups becasue people kept telling me to. most of the time on there it is little blips of good stuff here and there
when I first joined lymenet I found tons of info that was helpful, naturally because I was new at it all just a few short years ago, but lymenet is also still a great place and always has been, for a lot of up to date new things from some of its long time members, and I have gleaned much from even just a one line response sometimes from someone just flitting by in here too.
I think its way easier to search here (even though it clearly isn't the best search ability) than it is to search on the fb pages, etc.
I think this place has WAY more to offer than 'social media' . especially for people like me that used to have a fast working brain, but now stolen from lyme n cos it's much slower and harder to sift through the fast paced junk you don't need.
but, most people like FAST and hyped, and instant feeding when their mouths are open for their lunch like little birdies. Plus on FB you can have more friends..... something lymenet can't quite keep up with like FB
I am talking about the 'friends' you can see their pic and see what else they do and all that. the world is starving for connection and balance and they think it's on there with emojis and iphone portrait photos.
I too am sad and thoughtful at times over how lymenet has decreased in just the short years I have been here. I have to be the firt to admit that when I feel better I don't think to run on here. I first came to seek help. so I thhk of this place like my lyme 'mommy' or something-
someone to fall back on and find solace in . yes, in recent times it is an empty desert and leaves and giant pit in my stomach and thoughts of, "oh no! now what will I do???? " thinking no one cares any more.
but also I remind myself that things go in cycles and so to with lymenet and the likes of it wil too. I am remaining hopefull
if it vanishes completely there will be another something else that springs up in some way , some time. everything old is new again.
It does make me very sad. I really loathe fb and social media like that. I don't have any answers really, just my own I guess. and for what it is worth, I feel way more safe on here than I do on any of those other sites.
and btw I *DO* get lymenet popping up in in my searches on line for many tick questions still! yay!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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quote:Originally posted by TX Lyme Mom: Thanks, Dan. That was very informative. I had no earthly idea about any of this. It's downright scary to think about this level of censorship.
It's very scary, someone just brought this up on HealingWell.com
I still hope that one day the activity comes back to LymeNet.org and more people figure out that social media isn't all what it's cracked up to be.
LymeNet.org was so informative to me when I first contracted Lyme and even to this day, I see myself using the search box everytime I want to look up information on a new supplement I might try, like Selenium, which I just started using, then changed to Brazil Nuts.
HealingWell.com seems to be pretty active, I do miss the days when LymeNet.org was very active, maybe we all can make posts more often to bring back the activity of the site.
Posts: 28 | From MI | Registered: Apr 2019
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
I am grateful that when we are in a moment of desperation, there are now so many resources, more than "back then" in the previous century and the next decade.
Groups like LymeDiseaseAssociation.org and LymeDisease.org have acquired a volume of dedicated volunteers who write articles, blogs, brochures, and information sheets. They heavily educate the public, medical personnel and people in need of patient information.
They sponsor rallies, public education forums, and exhibits.
And look at the many groups and individuals contributing to sponsor research and the researchers unafraid of the risks of pursuing these subjects.
Although adverse forces still pursue "our" physicians and even patients or parents for "overtreatment.". And The Dark Side still exists and functions.
Most important, groups and individuals keep us connected to new information, hardworking researchers, physicians, legislators, groups and advocates.
Speaking only for myself, the time between episodes of considerable after-midnight desperation with few resources has thankfully diminished. TG LymeNet was there.
In support groups and probably online, there is a trend to want to move on a little to having a LIFE and putting distance between the individual and hard times. This could reflect times when LymeNet may seem less active. Or maybe it's just SUMMERTIIIIIIME!
Others are still in hard times but even so, the Horowitz book "Why Can't I Get Better" now exists, together with other books, and media, by physicians, journalists, researchers, and patients. Many brave physicians sponsor information websites or post information on YouTube. So there are increased resources, ongoing research, and SOME physician education (for those who choose).
God Love Dr. Burrascano and his courageous self and his Guidelines, which were once the only thing patients and parents and physicians could access, and "The Basics," from LDA-SEPA.
Both just as valuable today. Thankfully more people of courage, resourcefulness, research Chops, and those willing to volunteer in so many ways, have stepped up to the plate.
We still need LymeNet, of course. Smoochiez to all and Good Luck on your Lyme Journey!
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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posted
Lymenet was a godsend for me when my daughter was extremely ill 2007-2010. She had a 6 year remission but is now very ill again. So I’ve come back here, but it’s not quite the same, sorry to say. But I’m not the same either. After years and years of my own Lyme issues, on-going mold problems, my husband’s “Alzheimer’s” (which may be mold illness) and now watching my daughter getting sicker and sicker again I am so exhausted and worn down. It’s hard to hold onto hope after all these years.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
4seasons, I hear you. I'm sorry for your plight. and mine too and everyone else's.
there is SO MUCH more out there now on so many of these topics and al thenew advice and knowledge, it is hard to keep up. I thought it was hard a few years ago when I first found out what I had and cane to lymenet, but now there is just so much it realy makes my head spin!
Some poeople are really great about sending PMs out to me and I am eternally grateful. I try to do what I can along that avenue also.
When Your brain doesn't work right it is hard to keep up and /or remember exactly what is what, and to do all the research is so difficult I think even more now becasue I feel pulled in so mmany directions I cannot keep up. I feel like the turtle in a race full of rabbits.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
just saw lots of places on FB getting shut down- alternative health pages it seems?
Maybe this will bring new peeps here.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Lymenet is still the one site that I absolutely send new people to. I don't know if they listen, but I discourage people from going onto FB support groups because it's like the Wild West.
This is a place to get the best information.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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