Topic: Treatment views shifted on forum for the better
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I remember when I first came here a few years ago You could not ever post anything related to alternative or even ntegratuve treatment ideas without getting slammed in a negative way ! And not only treatments but ideas like paradites are a problem.
Now posts like parasite warriors thrives And rife thread and every other post is Something related to things that were Barely allowed to be spoken of.
I do recall having to be oh do careful how To post or present am idea and not put Certain words in a title or just it posting About certain things because it was just not Worth being treated badly or the debate or Put downs
Congrads to all for opening up and progressing .
People who were here long enough know what I am talking about but others may not and glad for You if you don't But just Renembet it wasn't always so open Even on a Lyme disease support forum.
I am so happy!!!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
the science has changed ... and the llmds have paid attention
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
During a recent LLMD appt, I found that ANS dysfunction is also a big piece of the Lyme complex/MSIDS puzzle.
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
ILADS did not acknowledge/mention heavy metal toxicity in their guidelines until 2008. It took one of the ILADS members to become ill with cancer starting to realize that we also face a multi-faceted disease. I talked about ANS problems in connection with Lyme here in 2000 and was chased off this board several times for one reason or another. Today we are at the point where co-infections literally mutate into parasites - but tell me who believes this.
I just returned home from Dr. K. for a friendly visit talking about MMS. Did you notice the flak I got recently for posting about MMS? He is very much into it also - showing me his bottle for his own daily intake from under his desk!
Someday we will be ahead of the rest. Maybe.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
posted
This is the leading edge, indeed. Hopefully others will take notice.
Posts: 348 | From NJ | Registered: Sep 2011
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thank You Gigi for keeping that info coming. I did not think MMS would cause Flak Still.
I believe in MMS and have taken it. It took me a long time to convince my mother who had cancer that parasites even existed in her and she like so many are just uneducated and think of them as huge tapeworms in the bowel. Period.
But that is so not true.
I think that concept of Co infections mutating into parasites is so very believable.. and true and I am so grateful to Gigi and Gael as main people keeping this info alive and so people can get the best info ..
WE are making progress and I have seen a huge change in this forum even if there still is some "flak" But its nothing like it used to be..
I used to fear of coming here and posting what I was really thinking or doing...
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
As a 'newcomer' 1.5 years ago I have all of you to thank for opening my eyes and passing along so much valuable knowledge...
It's a long journey but an extremely educational one as well...thank you to all.
Posts: 183 | From ... | Registered: Oct 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I have seen flack and bullying on both sides when it comes to certain treatments.
When it boils down to it, everyone must realize that your body is just that "YOUR body".
People could come on hear and say the newest thing is to drink Comet brand tub cleaner, and the very respected Dr in South America has a 99% success rate healing his patients with Comet. That you're still sick because you are too weak minded to go out on a limb and just drink some Comet.
However, if I don't feel comfortable drinking Comet...that doesn't mean I'm afraid to think outside the box, etc. It means I'm taking the fact that I need to be around for quite some time to raise my kids, and I'm not going to do anything that could possibly jeopardize that.
Especially when some treatments are just downright dangerous in my opinion for MY body.
Seriously, I have been told to drink Borax and I refuse. I know some may say "Borax is totally safe and is a miracle cure"...but if I wanted to drink detergent, I would prefer Tide
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Spring - yes back in 2006 for several years the difficulty in discussing anything alternative was on a level I had never seen anywhere.
Back then there were a few who did not feel discussion of alternative treatments were appropriate on this board. They felt it made lyme patients look like whackos AND some of it was dangerous. They are gone now and things are much more peaceful. The only downside that I've noticed is less technical postings and discussions.
I think both doctor and patient would benefit from using all the tools available, alternative and allopathic.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
There are medical studies with Borax & boron if you check Pubmed... You may think it's weird but there is some science to it.
I guess we have to experiment with this illness because there are so many theories. What works for one person may not work for others. It doesn't make any sense to be closed minded.
Some of the protesters to alternative theories may end up having to use them if their treatments don't work. I guess some realized that...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I use lots of alternative treatments because I haven't gotten well.
I'm just saying, for me personally, I am not going to drink detergent. But that's not what I was posting about.
I was saying, if someone doesn't choose to ingest so and so in their own body, they shouldn't be called "close minded" (that insult is thrown around so easily), "not thinking outside the box", etc...and sparkle you just proved my point. If any of use were closed minded, we wouldn't be on this board.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
There are other ways to take boron. I think it's very close to being borax chemically. You can take boron in supplement form. I used to take them. I tried some borax & I'm OK. It doesn't taste very good, though.
I tried some MMS a while back but it was too strong. I may think about trying it again sometime.
Just take a look at what's in tap water... It will make you never want to drink it again.
Yeah, people attacked me here on occasion but it's OK. I think there's more benefit than negative here.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
I think we've worked on an atmosphere of mutual respect for the past few years. It took time, but people finally realized discussion could be respectful.
Unfortunately, a lot of people had to be banned to get here.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Thanks lax mom. Needed some balance in this discussion.
I know people who have tried everything alternative and are still sick. Likewise, the mainline treatments.
Maybe the reason why there are more alternative things on this forum now has to do with people leaving or not posting anymore when they see what direction it has gone. Or people no longer have the funds to do anything but alternative treatments. As we know, it can be very expensive to treat and insurance frequently will not pay.
[ 03-08-2013, 10:54 AM: Message edited by: poppy ]
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by poppy: As we know, it can be very expensive to treat and insurance frequently will not pay.
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
What i find strange is when someone says they are afraid to try something new like colloidal silver but have no problem taking abx. I do believe abx are safe in the short term but we really dont know what they do to people long term and having watched my uncle pass from leukemia i sometimes wonder if the abx had something to do with it.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I've been attacked before here too. No worries. I just remind myself that people believe what they want to believe (used to be me). I used to think Gael and Gigi were too far out there (sorry, my bad--closed mind). Now I thank god they post everything they do. We are so lucky to have them here. I am so glad I opened my mind.
I think Schopenhauer's quote says it all (Gael used to have this on all her posts):
"All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident".
It basically applies to anything and everything that's not the norm.
People naturally like to think they are doing the right thing. Yet, most people can't see something until the same thing happens to them. Just look at our political system. I've found it's very difficult to make a dent in someone's belief system, whether it's about lyme or anything else.
The only way to progress is with an open mind. The closed minded get left behind.
I'm happy you came back, Springshowers.
I'm very grateful to those who stuck (and continue to stick) their necks out and express their suggestions/advice and or viewpoints. I welcome every single one of them!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Thanks for the kind support Catgirl. I was okay with the opposition about subjects I was posting because I felt it was a huge window towards healing for those still chronically ill with no answers.
Welcome back Springshowers. Thank you for your great posts on Rife and Detox Support. We need to be open to every option available to fight this beast!
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Yes - I was just mentioning the same thing to my husband about how lymenet has changed over the years. I've been on it for 6 years now and when I first came on knowing nothing about lyme, all I read about was abx treatment. There were a very few who posted about herbs and there was some mention of the Cowden protocol and Zhang but that was about it. I did not read many success stories with natural treatments so I figured abx was the best.
As I eventually saw that abx were not fully healing my children, I sought out the few who posted about herbs and alternative treatments. It was hard though because there were not many who took this path and it was very overwhelming to me trying to figure out a protocol.
I remember when there was a big discussion on the board about whether to split lymenet up into two separate discussion groups: an alternative board and an abx board. I was very against that and am so glad that didn't happen!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I agree with you lululymemom. Sometimes, people get lucky & find the correct thing that helps them. Everyone is different, though. What works for one does not always work for others.
Yes - thank you Gael, GiGi & others who try to help everyone by posting what they have learned. We really can't rule anything out because in a year or 10 years from now - it might be just what we need.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Thank you, Sparkle.. You have always been one to make important contributions as well as Gael and Gigi.. They have never wavered from their theories and time has proven them correct. Even Dr. Oz is now addressing metal toxicity in the brain....
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
My observation is that the fringe does become the mainstream over time. It's just hard being the person who sticks their neck out & has to deal with ridicule.
Some people will always be conservative. There's noting wrong with that but with Lyme & the associated illnesses - we don't have time to wait until the AMA, CDC or NIH figure out what to do to help us.
Sometimes, we have to experiment. Even the best LLMDs & natropaths have failures. I was just reading about someone who spent $1million to cure their child. Not everyone has this to spend.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Part of the difficulty is that some people find it hard to accept that what has worked for them may not work for others . It is a sort of failure of the imagination.
I do see this attitude particularly in some people who have had success with antibiotics and keep doling out the same advice that improved health is just a question of perseverance with them. Yet we all have different combinations of infections and viruses, not to mention different genetics, lifestyles and environments so why would the same treatment work for all?
We are also all tackling the illness at different stages of time because of unreliable tests and widespread ignorance, so what may often work within a few months of being infected may be useless later on.
I agree that there has been a shift over this in the last couple of years, perhaps because several well known LLMDs who use antibiotics admit to treatment failures in people who have gone on to respond to other approaches. Several now use herbal protocols etc as well or instead of the antibiotics.
As more are diagnosed with Lyme, more are also prepared to stand out and say that certain things just haven't worked for them. Before they may have felt that they didn't want, for example, to frighten newbies by challenging the efficacy of a protocol or a method of treatment.
It is good that there is more open discussion.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
When doctors acknowledge how frequently antibiotics do not work ( except in early cases ) the alternatives are necessities !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's kind of bizarre but in Lyme-world... the alternative is high doses of abx. It just twisted everything I had studied about natural medicine. It's ironic that the "alternative" is the opposite of what was always thought of as appropriate in natropathic medicine.
I don't know how that got to be the norm in the first place...? I'm not against abx. I just didn't like the idea of giving them out without really knowing if they actually work or if the patent actually has Lyme.
Sometimes, the treatment may hit the target but in alot of cases - the doctors are just guessing. I don't think abx should be dispensed without careful thought. The side effects are quite serious. It also can lead to drug resistant bacteria.
I'm sure alot of doctors are thoughtful & well meaning but alot aren't. Some of the ones I have seen are just looking for money. So, if you can't trust the tests or the doctors - what do you do?
What happens if you don't find a cure before your money runs out?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by sparkle7: Sometimes, the treatment may hit the target but in alot of cases - the doctors are just guessing.
You are so right sparkle. Since I was getting worse and worse when my LLMD would add more and more antibiotics, I asked "What do I actually have? Do I have Lyme?"
I was told "We don't know, we just throw everything we have at you and see what works"
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: I was told "We don't know, we just throw everything we have at you and see what works"
This is not a good attitude to have if they are throwing abx at us. I once literally had a doctor throw Zoloft samples at me...
They are studying the human biome - they have no idea of the interrelationship of all the organisms that co-exist in our bodies. I think it's irresponsible to "throw" abx at us like candy...
When I first got diagnosed with Lyme & they "therw" all that stuff at me - I felt like it was do-it-yourself chemotherapy... Then, you are on your own with all that "stuff'. My mother was in a hospital doing chemo...
Just my opinion.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic