Topic: This site needs some help and needs cleaning up.
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by LymeNotLymes:
quote:Originally posted by prconn: Catgirl,
I understand that powerlines,cell phones, landlines and wi-fi emit electrical waves. We are electrical beings and emit our own waves. Research has proven it all to be true and fact based.
I just don't understand what your position is. We live in a world that is polluted by things that are much more dangerous and savage than electrical waves.
Let's bring this back to finding a cure and help for people with LYME! Lyme and other diseases have been around since the beginning of time and human existence.
Every aspect of being diagnosed,treated and hopefully finding a cure for Lyme need electricity,landlines,cell phones,computers and wi-fi. Without these tools we will never find a cure.
Thus I am still confused how this is related specifically to Lyme. These same conditions exist for every human disease and are not just specific to Lyme.
Just seems like a dog chasing it's tail.
I could not agree more. Of course the last time I agreed with someone my post was deleted. Yes, lots of things make Lyme worse. They make everything worse. Still, the main problem is Lyme and it's coinfections.
So we should not do what we can, avoid what we can, to manage symptoms so we can manage to earn enough money to pay for lyme treatment ... that's it, just get lyme treatment that works on lyme, do nothing else at all supportive or ancillary ??? ??? ??? ???? ???????????????????????????????????????????????????????? ?????????????????????????????????????
Posts: 1927 | From se usa | Registered: Mar 2010
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by koo: OP, I understand what you are trying to say. I think there is a fine line between having an opinion and being opinionated on this board.
I would hope we could also agree that there are no absolutes when dealing with lyme and they shouldn't be expressed as such...."you will never get better if....".
Lymetoo, you are correct...discernment is in order. I think desperate people do desperate things and try all ideas floated out there.
I have a friend who was cured, yes, cured, of late stage lyme with nothing other than ABX and some initial supplements . She probably doesn't know what a heavy metal is, didn't pull out mercury fillings, and is not gluten free. She is around 15 years out from treatment, parties hard in her fifties, had a husband go through cancer, and never recurred.
Great for her! And then obviously not everyone is so fortunate.
Posts: 1927 | From se usa | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Michael,
Hear you very clearly, down to the exasperation in every punctuation mark and wide eyes that surely go along with this. Well expressed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I agree with you, Michael. For many, there is more to the illness, or at least to what is keeping us ill, than infection(s).
Why reduce something complex to abc? In any case, a forum like this is here to exchange opinions and experiences; not to provide cut-and-dried, one-fits-all medical solutions.
Posts: 1647 | From UK | Registered: Nov 2008
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posted
Free speech and the free marketplace of ideas---- is positive, helpful and important to our nation--- and especially to the Lyme disease community. Many ideas that were considered "out there" 10 years ago are helping people recover today.
Why "clean up" these "threatening" ideas?
Today's "Offense Free Comfort Zones" are diametrically opposed to our sacred and valuable concept of free speech.
"Offense Free Comfort Zones" are being pushed heavily in the media and on college campuses today--- much to ALL of our disadvantage!!
We need a rich marketplace of ideas in America--- and in the Lyme community--- and this is very healthy.
"Cleaning up" forums that make a couple of people uncomfortable is a very unhealthy way to find a cure--- and there is almost certainly some sort of agenda behind those who would try to force people to be quiet by pulling out the "cleaning up" meme.
Topics like mHBOT, EMFs and also "Controlled Opposition" may ultimately help us find a cure. Why?
Because, for example, understanding an important concept like "Controlled Opposition" helps Lyme victims to be extra careful about WHICH Lyme organizations that they contribute money to.
If we all contributed to only those organizations that are PROVEN to support non-denialist research and education, we might eventually find a cure. Handing money to organizations that support Chronic Lyme denialists will probably never help us find a cure-- even if 90% of the work seems decent. And it enables and empowers Chronic Lyme denialists.
Censorship of ideas is very unhealthy-- it is a feature of totalitarian nations like the former Soviet Union--- and it is essentially un American.
Posts: 696 | From New York | Registered: Aug 2006
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Agreed, WakeUp!
In addition, it would be helpful on this site if we were able to discuss both negative and positive experiences we have had with LLMD's, in a respectful way.
In my opinion, this information is invaluable in helping others make more informed decisions and avoid possible costly mistakes that may be deleterious to their condition.
Doctors are often vehemently defended here JUST because they have an LLMD label. An LLMD label doesn't necessarily guarantee anything about that doctor's motives, ability or success in treating patients. I learned this the hard way...why should others have to?
Although it is allowable to discuss (and even "trash") non-LLMD's, this subject appears to be taboo on this site, as I have personally had several posts that I felt were helpful to others censored by deletion, no matter how respectfully worded.
Lyme Net is a very helpful site in many ways, but to truly be a non-biased source of information this policy needs to change...
Posts: 2083 | From Earth | Registered: Jul 2013
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I can't believe what I read here today. I read it with a smile.
More and more people are now speaking out what no one was, in the past, here in lymenet.
In the past, there were God-like LLMDs and God-like protocols, and people DID believe on these FIXED practitioners and protocols.
With experience, years gone, failures, and experience exchanges, we see that there is no clear cut answer for anyone.
When I finally started getting out of lyme, I was SCREAMING to you all: I don't know how you guys can come out of lyme in a reasonable amount of time without energy test.
Of course I was bashed, and still am. But I only tell you what I think saved my life, my daughter's life.
Only going to do ART and muscle test once a month helped people out IN THE PAST, but in my case, I needed energy tests DAILY!!!
I swear I wouldn't be here alive, and not at all cured (even the word cured is bashed here) had I not learned energy testing. Dr. K is bashed for that, many people are.
But the reality (my reality at least) is that out of the box methods, techniques, can help many of us out of deep hell.
Had I not my energy testing, I wouldn't have found my own specific babesia protocol, bartonella protocol, and all binders, all anti viruses, all symptom relief acupuncture points, etc etc.
Posts: 6200 | From Brussels | Registered: Oct 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Although I realize it comes with the disease, it saddens me sometimes that there is such depression of spirit, pessimism, and disbelief in a cure in Lymeworld...that the methods utilized by those of us who ARE cured are so often immediately rejected and dismissed by the majority...
If it has happened, it is possible!
Posts: 2083 | From Earth | Registered: Jul 2013
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
quote:Originally posted by Keebler: p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia.
A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.
p.343 “The Borrelia were duly isolated and compared for differences in their genes.
Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn’t infect humans and ten caused only a rash.
Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain.
The most virulent of the strains turned out to be the prototypical B31, the version of B. burgdorferi … ultimately isolated by Burgdorfer and Barbour at the Rocky Mountain labs in 1981.
The implications are profound.
It's not a surprise...., but, OMG, The implications ARE profound!!!
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
LLMDs are not discussed here because the board owners want this to be a board about support from other patients. It is a forum for members, it is not inhibiting free speech as you are welcome to use more public forums to voice your opinions on LLMDs, just not here. We keep a positive environment so people feel supported and get their questions answered. There are other venues for other needs.
If you have complaints about what is allowed on the board, voicing them on the board doesn't get your complaints to the right people. You would need to contact the board owners, but they are not going to change their mind. The moderators do not make the rules.
Part of the reason we don't allow negative discussions about LLMDs is that only half the story will be heard .... the LLMDs are not going to be coming on here to defend themselves. Plus, we all know, only the negative stories will be voiced here, so they'll all look bad. And any person in business has negative stories from some unsatisfied person. None of us are perfect. That negative atmosphere is not what we want here.
Also, we don't give people parameters on what they discuss. If you find it irrelevant, just scroll on by.
I'm moving this to general support since it's not a medical question.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Just as an aside ....
I got better from Lyme BECAUSE of the alternative stuff including emfs and light treatments on this site. The only thing I have to do now is continue to take my MTHFR supplements and control my histamine processing issues. Both of those predated Lyme and may have contributed to how sick I got and why it was so hard to get better. I learned about them here, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks, sixgoofy - issue about health aspects in us predating Lyme - alot of people have genetic defects that set them up for complications. Some people have genetics that set them up for mold sensitivity. Some have difficulty detoxing. Some are more allergic individuals.
Thus when we meet up with these illnesses, and other toxins, we get more sick and have to learn about what in us is blocking our getting well. Once we work with our biochemical pathways, alot of us can improve.
Like I have a doctor who works extensively with people who are difficult detoxers. That can be tested for, too.
Posts: 13171 | From San Francisco | Registered: May 2006
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Med questions is for serious med stuff!
General support is like a support group.
Blow off steam, complain,comfort someone,tell a joke,cry, laugh.
One is physical,one is psychological.
MADDOG
Posts: 4085 | From Ohio | Registered: Oct 2000
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Brillant explanation, Maddog! Feel free to howl here!
-------------------- Ann-OH Posts: 1755 | From Ohio | Registered: Aug 2014
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Since Ann-Oh approved it, howl to this maddog...
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
All I know is that a couple years ago I cam to find lymenet when I could barely walk, barely talk, barely think, barely type , read, or just about anything....
and NOW I can ride a bike, got some big word vocab back, remember more, and even started a blog.
I did this by reading what I could here (some of it was and continues to be too overwhelming and like someone said above- I will probably never get to it all, haha), and by doing LOTS and LOTS of my own research off of lymenet , but with many leads from here in many forms.
lymenet took me to my "crazy" drs with whom I 100% give credit for making me well enough to be semi human again.
lymenet sent me some very good buddies and friends that I know will last a lifetime.
that being said, lyment has also led me to great confusion and sometimes pain in leaving me cold and alone just like anywhere on earth could.
this *is* a support group and I wish it was a littel more supportive the way I see and need support, but I never could have gotten how I feel today with out lymenet, I don't think.
sometimes being sick can realy make a person nuts and therefore they may not have perfect control over what they say or how to say it. and not everyone is college educated or went to finishing school.
and if someone didn't talk about plum island or magic wands or crazy machines or hormones in milk, or electro whatevers it would be an injustice to anyone suffering with this crazy stuff as just about everything is related somehow. I just weed through and use what *I* think is best for me.
-------------------- 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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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I would probably be totally bedridden, institutionalised or dead without the support and knowledge I found here.
and that's the god's honest truth.
no one believed I had lyme until I found this site and got a referral to a llmd.
what works for one may not work for another. each one of us has a variety of emotional, psychological, and physical issues to deal with. add family problems and you have an extremely complex health issue which even the best llmds will admit takes years to solve let alone treat.
this board is not perfect, but it damn sure is to me.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Amen Randi.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Lymenet members saved my life too (and my child's).
I have a debt to many of you, and that is why I continue to post my crazy posts.
Without your suggestions to look FURTHER, to find OTHER therapies, OTHER practitioners, I don't think I would be alive.
Many people though are negative here. And I understand them somehow, as many of us went through that hell. Disease, loneliness, desperation, pain, weakness, financial problems, relation problems....
but I know that many are negative ALSO because of toxins. They don't want to believe, but toxins always makes me angry.
Today, that I no longer have lyme, I SWEAR I feel very lucky to be alive. It's been 6.5 years out of lyme hell, and it's been 6.5 years that I feel it's a privilege to be here. Despite still getting tick bites!
I do thank every single day for being alive, for seeing my daughter growing (and she's also alive and walking, and going to school like other children).
It's been 6.5 years that I live a miracle and I really feel thankful to be alive. Before lyme, I even didn't know a person could live in gratitude, the whole time. But it is true, I can't forget that it's gone.
Thank you all!
I'll be leaving for a week in Italy, driving, forgetting diet, we're going to eat wild pig, my daughter will HAVE to eat wheat as it's hard not to, in Italy. This would have been impossible just a year ago!!!
It is in itself, like a miracle too, and the best, .....we're going to see Charlie Cannon singing in the church in small town in the middle of Italy!
the best part in NOT having lyme anymore, is that every single thing you live, you enjoy it at least 4 times more than before lyme.
The taste of life is much better now than before lyme. I swear!!
Posts: 6200 | From Brussels | Registered: Oct 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I think if people used the "off topic" page again that would be good. then people who only want "real" lyme talk can avoid the fluffy stuff. no one really posts in off topic though. I have tried to start some things there but not very manhy people look there. I guess when you are feeling so crappy that you don't want fluff, but when you start to feel a bit more human it;s fun to have some other talk too.
-------------------- 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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