The debate between traditional and alternative treatment will probably go on for some time and we will continue to experience differing opinions among the LymeNet Flash users.
The LymeNet Board of Directors have had many discussions relative to creating a separate Forum specifically dedicated to Alternative treatment and have determined that a single Forum ie:Medical Questions is the overall best option for our user community. This provides a single Forum for all our users, from newbies to very experienced, to view and respond to any and all medical questions/information in one place.
The problems we have seen are not solved by implemeting multiple Forums. The problems/issues/concerns are created by user behavior and we need our users to act in a manner that shows respect and allows for an open discussion.
Thanks,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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bettyg
Unregistered
posted
quoting lou b....
The problems/issues/concerns are created by user behavior and we need our users to act in a manner that shows respect and allows for an open discussion..
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posted
Thanks -- I agree -- I don't think we can neatly separate treatments, as many people mix them.
I would like to see more questions asked of those who feel they are benefitting from a particular approach so we can learn from them, rather than us keep giving our opinions repeatedly about what we believe works. If we all jump in, saying we're on whatever side we're on of the treatment debate, I think it can keep us from learning what's working for another person.
Posts: 13171 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
lou, would you make this a STICKY FEATURE at top of medical or this will get buried, and the newbie's won't know all about this, and the discussions will continue getting heated now and then. big thanks lou!
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
That might be good too, Betty.
I think it's also good if maybe we can try to keep it floating on the front page so it gets noticed.
Sometimes people who've been here for a while and previously read the top forget to look up there, or they neglect to notice new posts. It might be good in this case to have a floating reminder too.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Thanks board moderators for keeping the two treatment approaches together. I, for one, like to hear the latest of both approaches.
I try hard to wade carefully around the landmines set by those opposed to alternative treatment. (I seldom see heated debates against antibiotic use.)
I am so grateful for the alternative information I have enjoyed here at Lymenet. I didn't follow through on all of it, but I did learn about alternative conditions such as Leaky Gut Syndrome, Yeast infections, Heavy Metal Toxicity, Mold Toxicity and their possible cause/complication to my illness.
Finding a doctor trained in these areas brought me to the point of recovery I enjoy today. Antibiotics have also helped me to recover and I also like to hear people's experiences with the different drugs.
I am so thankful for all that I have read here at Lymenet, even the really way out there stuff that I would only try as a last resort and maybe not even then. I don't have to try everything I read about.
Remember, to many medical professionals, longterm antibiotics are "really out there" and dangerous to boot. Yet, so many of you got well only after long rounds of antibiotics.
Thanks for keeping it all together for us. It is so much easier that way.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Peacesoul
Unregistered
posted
I vote to have a separate section for nude pictures of Hugh Jackman and or Brad Pitt. Seeing these two helps cure my lymes aches and pains. ;-)
kidding.....I like that both traditional and alternative are together
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Thank you. I agree. I'm doing both herbal and ABX treatments.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Majority of us have found relief one step at a time. Minority are blessed with taking abx and knocking lyme & company out the door. This is usually not as quickly as we would like, but patience is still needed to travel the abx road.
It doesn't happen in the 6 weeks that traditional medicine finds written in their big medical book. Otherwise known as duck research. Quack, quack.
Even if you are taking the abx route and are what are called newbies on this site....you will benefit from reading and researching (if you can at this time) some of the many threads on this site that are sometimes referred to as alternative ways.
Alternative ways are not always seeing outside of the box treatments examples: rife (a frequency machine) or coffee enemas (the laughable thread I read 5 yrs ago). If you suspect lyme & company is making life and health hard for you start doing the little things that could help your immune system and body cope better......
Better nutrition Good quality vitamins Good quality minerals The best quality probiotic Good quality water No alcohol or next to none Sleep, restful sleep and great quality/quantity Patience and open mind to changes
Give any and all things you try at least 2 mths to see a difference. Don't be surprised to have your immune system/body react negatively to good things you try also.
Don't be surprised if you see no benefit to a lyme & company protocol for 6 months or even a year. That includes abx, including combos and switching abx every few months if your lyme & company is building it's army on your current abx treatment.
This illness is sooooo powerful. It (bacteria)will change it's make-up to evade the enemy. The enemy being whatever you use to aid and defend your army to fight it. I think of it as a SUPER BACTERIA that will try to take you down with it when it dies.
This website is the best IMHO. You will find knowledge is power when you join this discussion group. Whether you are the abx believer or the alternative thinker.
Search features are great too. You can go back and see posts from years ago. Sometimes this search feature can be busy and if your computer is not fast loading it can be troublesome.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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quote:Originally posted by map1131: Majority of us have found relief one step at a time. Minority are blessed with taking abx and knocking lyme & company out the door. This is usually not as quickly as we would like, but patience is still needed to travel the abx road. ... ... This illness is sooooo powerful. It (bacteria)will change it's make-up to evade the enemy. The enemy being whatever you use to aid and defend your army to fight it. I think of it as a SUPER BACTERIA that will try to take you down with it when it dies.
This website is the best IMHO. You will find knowledge is power when you join this discussion group. Whether you are the abx believer or the alternative thinker. .. ... .. Pam
Yes, I totally agree.
If it hadn't been for this site and the ...'alternative'... treatments I learned about here, I have no doubt I would still be sick!
With Lyme, especially if there are co-infections, you need a "multi-pronged" attack.
"Alternative", as well as "standard" approaches can be beneficial. Due to what I wouls classify as criminal action of certain reasearchers and, perhaps, ...'insurance'... companies, the best treatments for lyme are still not recognized, or possibly even known; an individualized approach may be essential. Some people can stand up to some drugs better than others. Also, all abx are not equivalent in their side effects and dangers-- this site was of the utmost value for me to check out things to watch for concerning side effects, as well as read experiences relating success stories. I was able to assimilate information on these things so I could discuss them with my LLMD.-- it was a constant exploration.
The "Lyme-literate" physicians who stand up to pressure for a "cookbook" treatment, are of prime importance at this point. Of course, the situation that we face now does leave a certain opening for treatments of dubious value, but we have to keep this in mind; this discussion board is good for helping to get the facts straight. DaveSPosts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
DaveS, I believe somewhere someone is working on the answers to all our questions? I hope it is a world famous Lyme literate doctor, who already understand this......
this illness must be addressed from many angles including abx, supplements, exercise (like yoga, walking, something light in early treatments & working up to more impact if you are physically), herbs, physical therapy, nutritional, etc.
My etc includes some things I've tried that really help, but I know not all can find the type healers I've been blessed with such as naturopath, chiro, massage therapist, muscle testers, my traditional medicine Internists/alternative thinking PCP.
My primary insurance carrier and Medicare don't pay for many of my treatments. It has/is not cheap. Most people on sick leave or single parents, or no insurance at all can afford some of this stuff that helps.
I'm sorry our medical affordabilty and treatments accepted in this country are driven by the big INSURANCE and PHARMACY companies and our GOVERNMENT.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
In my case I've chosen an alternative treatment since there are no LLMD's in our area. Slowly but surely it works, I wonder will I ever get a complete remission. Taking abx without monitoring by a duck leads to nowhere I believe. As for herbs I've found a practitioner who almost believes that what he cures in me is lyme. Besides there are no side effects from herbs and bacteria cannot make a shield against it , like it happens with abx. However the fastiest way to get cured, I think, is combining abx and alternative. And sauna or "bania" as we call it here! And exercising of course( I am working out with weights at the moment)!
There is no way to get cured unless you grab your health back from lyme. Never give up.
-------------------- ~From Russia with Lyme~ Posts: 34 | From Rostov-on-Don, Russia | Registered: Dec 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I really don't care who comes here and reads my posts. I believe I am a fairly intelligent woman who has gone thru this lyme & company experience since 1998. In 1999 it became obvisious that I was dealing with one mean illness.
I was 42 year old female in corporate America that had been working for the same company since I was 16 years old. I had worked my way up the ladder with hard work and study.
My degree is from the University of Kroger. Kroger is the largest grocery retailer in US. When this illness struck me, I knew I was about 1-2 years away from my biggest corporate move up the ladder. My dream upper management position.
I didn't get that far from being a stupid or clueless, naive woman. I had a brain. Finally the position was mine and I had been trained for this position off and on for 10 years. There was an opening, my mentor, she was retiring after 30 yrs.
She retired, I took the dream come true position. I had been battling lyme & company for 3 years with abx. You name an oral abx and I probably tried it.
I made it 9 months in that position and then was body slammed by lyme & company. I became disabled!!!!! I took IV for 6 weeks and nothing.
I traveled 8 hrs one way to see a great LLMD. I did more abx and more treatments of everything this well known LLMD thought might help me for 2 years.
I realized in April 03, still disabled and barely hanging on to life (see I felt I was dying a slow death), that I had to find something else or someone else to help me. I was still disabled, fighting with Metlife for long term disablity and fighting with Social Security, I needed help.
I was not going to lose this battle. I starting thinking outside the BOX. I don't care if any ID doc or any journalists in the US wants to hear me telling every detail of this journey.
I am not insane. I am not stupid. I am a perfectly sane and fairly smart woman living this nightmare who isn't shamed to tell my story of the alternative road I've had to follow.
I have been blessed enough to have 401k money to help pay for some of my treatments. I have blessed enough to have shown Social Security the truth and get enough money a month to pay our bills.
I haven't found the alternative cure yet either. I haven't claimed that either. But every step I take down my alternative road is better than the traditional medicine route I was going 4 years ago.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Hey Pam? here is something to show you my respect: . However, everyone here keep to the topic! Who cares if not a lymie comes here and reads all this stuff. I belive it's a God given test to me and according to the holy scripture He doesn't give more than one can bear. I chose alternative. Like Frankie said "I did it my way".
-------------------- ~From Russia with Lyme~ Posts: 34 | From Rostov-on-Don, Russia | Registered: Dec 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've never done:
MMS- just read about it here on this site before it was pulled.
Color Therapy-well a PT place tried it on me and I said, forget it this isn't going to help me after the second time.
Drank my urine-I'm seeking help, but I wouldn't drink my urine folks.
Oil pulling: oh, I did buy the stuff to do it and it was so gross. I tried it two times and stopped. Others swear by it. Just wasn't for me.
IV peroxide: Just posted recently that I wouldn't do IV peroxide. The idea scares the crap out of me. Yes, I use peroxide to clean up tub up after I take a detox bath. Is that the same thing?
Maybe I will post what I have done in a new thread. Maybe I can help someone that has failed at abx usage for the last 3 years and are looking for something to help them recover.
Notice I didn't say cure them. I wrote help them. I believe in helping yourself one step at a time.
Just because I'm still fighting the good fight and struggling doesn't mean I've wasted time or money on alternative stuff.
Because I've pulled many ticks off me in the last 2 years. Any ideas what they left in me? I'm searching and learning everyday so I can attack them with alternative stuff today.
I might even try abx again. You never know. Or you know I might try MMS someday?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Forget the ALTERNATIVE forum for the time being - Lou B. and Jenifer have explained to us that the current LymeNet software can't handle any additional forums.
***''Perhaps she [Pat Smith] should know that if anyone is interested in discrediting the Lyme community as a whole---- they need look no further for proof that we're not really sick (example: color can cure us) after all.''***
And maybe... just maybe .... some of you might be looking at this problem all wrong.
What better evidence do we have that mainstream science and medicine are dropping the ball when it comes to Lyme Disease.... than for the sufferers of that disease to resort to every manner of unorthodox diagnosis and treatment under the sun? If anything, this is just additional verification of how sick and desperate we really are, and just how dissatisfied we are at what mainstream medicine is offering to us.
Additionally, there is no better way to get the attention of mainstream medicine than to make it obvious that they are losing market share of the $$ spent on healthcare. When patient $$ start departing, the first thing that happens is an attack on those alternative practitioners who provide the alternative service. And, hopefully, the second thing that happens is a concerted effort to compete in the market by providing a better plan.
We can view interest in alternative ideas as detrimental to the Lyme community, or we can use it as evidence to support the idea that orthodox science and medicine are not providing adequate answers. The choice is yours.
***''I don't think censoring in this way is a good idea, but I am not sure we have an alternative if we want to be recognized as really sick.''***
Ah, well, then those who want censoring should go to some other forum where that practice is condoned. This isn't it. I'm sure anyone wishing for a `conformist' forum could contact the IDSA and learn some tips on how to promote exclusionary ideology.
***''My only hope is that we can somehow bring lyme back into the mainstream. Now if you mention lyme a doctor's eyes glaze over and they start looking for other clues you are a hypochondriac or psychotic.''***
That has nothing to do with alternative treatments or ideas. That's a direct result of the `mainstream' indoctrination all physicians receive as part of their `education'. The same thing happened with the idea that ulcers could be caused by a microorganism, Gulf War Syndrome, Fibro, CFS/ME, ..... and now Morgellons. When orthodox medicine has no way to `fix it', they deny it and discredit the patient instead. Let's not mistakenly lay blame for that on people who entertain alternative options.
Meanwhile, since orthodox medicine does not have all the answers, let's entertain good, healthy, respectful discussion about the possibilities that lie outside the purview of mainstream treatment. I believe the object of LymeNet is to support exploration of ways to get well, rather than the endorsement of any particular philosophy.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
MomfromTexas, I hope and pray you find everything you need for your child in traditional medicine for lyme & company.
I mean that from the bottom of my heart. See I'm the grandmother of a soon to be 7 year boy, who is just starting the journey for help for my grandson.
I have cried many times reading stories on this site about children. I didn't fantom that I would be facing this, with my own flesh and blood.
Thank the Lord, I lived 9 yrs of this awful experience to help him. Don't worry, traditional medicine is my first stop. And I pray it will be over soon, just several months of abx and he will be his old self.
I couldn't get him to drink his urine. lol I have a hard time just getting him to eat fruit & veggies instead of french fries.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
MomfromTX, perhaps you didn't really mean `censorship' in the strict sense of the word. I wasn't quite sure what you meant, and I just wanted to be clear about any efforts that might favor one ideology to the exclusion of all others. I meant no offense towards you.
Could someone explain to me who these ``outsiders'' are, and exactly what harm they can do by coming here and `using our posts against us'?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Peacesoul
Unregistered
posted
quote:Originally posted by Momfromtexas: I think alternative methods should be tried (unless they can do harm) and if we are lucky they will help.
I am not talking about things like B12 shots, or hyperbaric oxygen, I am suggesting it for other things like conspiracy theories or electromagnetic forces, or possibly urine drinking, whatever. \
This is not alternative, but kooky. Alternative is so mainstream now and very accepted, even by the medical world.
There is a diff between alternative meds and doing something nuts like drinking urine.
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posted
"Never, never, never, never, never drink urine" Not Winston Churchill
-------------------- ~From Russia with Lyme~ Posts: 34 | From Rostov-on-Don, Russia | Registered: Dec 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
What I derive from the many negative comments about alternative treatments is this mind set.
"We want to get well, but we want to do it in a conventional manner." I guess I do not understand what difference it makes how you improve. A politically correct way to wellness is a strange concept to me.
Another predetermined mind set seems to be, "if it is alternative it does not work." Hand washing in a hospital was alternative at one time. It took a great deal of time to over`come the resistance to this simple method of sanitation. Why? Because it was not understood how it could help. It was considered kooky at the time. The evidence was obvious, but the lack of understanding of how it worked killed many people for no good reason. As a matter of fact, many treatments used today were alternative at one time or another.
This comes from the thinking, "If we do not understand how it works, it cannot work". This really makes no sense at all. People took advantage of gravity long before it was understood. Electricity is still not totally understood and neither is light. You could deny the effectiveness of either using the same argument.
And the mistake that is made with every single generation. "Science is so advanced now, they can explain everything." This leads to the false conclusion, "If it can't be explained, it is false". This has always been wrong in the past, and it is going to be wrong today. Just the fact it has always been wrong should clue everyone in. How many Cancers have been found to be caused by viruses in the last few years? Someone was looking at Cancer viruses in the thirties, and he was soundly discredited.
I also do not understand putting your wellness in the hands of people who do not even believe Chronic Lyme exists. How hard are they going to look for a cure for a disease they do not believe exists? Rule number one is, you cannot find what you are not looking for.
In the U.S. we used to place a great deal of pride in our individual ingenuity to solve our own problems. Now we sit passively by and wait for a savior in the medical community to help us.
I will not wait for a savior. We all have brains just like other people trying to solve this problem. The cure will likely not come from a doctor. They are not trained or encouraged to be innovative.
There are many others that have enough confidence in their own reasoning abilities that will try to find a solution to their problem. Lymenet provides a faster way to sort through it all. Many things will not work. But something will, and someone will find it. We do not know who or what it will be in advance.
Just my two cents.
D Bergy
Posts: 2924 | From Minnesota | Registered: Aug 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Thank you D Bergy, very well said. All I KNOW for sure is MY story of lyme & company since '98.
If I had the continued in the traditionl medicine box, there's no doubt in my mind and heart...I would be visibly crippled, in a wheel chair, bedridden or the worse of lyme & company death by destruction.
I've been weighing options recently about trying some short term abx for some bartonella sx that are growing stronger since my recent tick bites June 07-today.
That is what I do is research, study and consider my options. What's in my best interest? Sometimes my angels and yes even sometimes the Lord guides me. Other times they let me figure it out, since they (blessings) know I'm quite capable.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Yes, I totally agree-- otherwise I may not have found out about the treatments responsible for my recovery! In appreciation, (and a certain amount of amazement, that this question would have been brought up), DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I guess a better definition of "negative press" is in order. People interpret what is here in various ways.
You can say "look at the lunatics drinking their own urine" thinking this will help them.
You can say "look at the can do attitude of the people on Lymenet". They work together to try help each other.
You can say "Lymenet is a good source of information on both alternative and traditional treatments".
You can say that Lymenet has more information on main stream treatments than most other sites.
There is about a hundred other possible interpretations of what goes on here, depending on what your agenda is, and what picture you are trying to paint. The case can be made for any one of them.
We really have no control over that aspect. It is subject to interpretation from the reader. When we are disrespectful of each other and act like children, that does not help the cause either.
We only can control our own actions. Other people will get enough ammunition for what ever position they are supporting, good or bad, from the forum.
I just try to be as accurate as possible, and give my opinion or experience on treatments I know something about from use, or in depth research. Whether alternative or not, as I use both in my own treatment.
If mainstream researchers can help with this, I am all for it. I just do not see much action on this front. They are not going to use Lymenet as their impetus whether to research or not. If they are, they are not smart enough to help anyway.
D Bergy
Posts: 2924 | From Minnesota | Registered: Aug 2006
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
What other section are they supposed to go in?
As pointed out before, it is not possible for the administrators to make another section. I really do not care how the site is organized, but if it can't be done then there is no point in discussing it.
I think you are confusing pharmaceutical company based treatments and experimental treatments. Pharmaceutical based treatments are often experimental also.
Basically, all the ones pulled off the market were experimental as they were not adequetly tested to begin with.
All statin drugs are experimental as they have never definatively proven they help heart disease. Latest research indicates some of them double the rate of the accumulation of arterial plaque and increase the risk of heart attack.
Many depression drugs are experimental as no definative link has been found between seratonin uptake and depression.
So your definition on experimental and mine would not be the same.
I think most experimental treatments that fall outside the phamaceutical realm are obvious to most people. Certainly they are to any doctor or anyone familier with medicine in general. Most of us clearly label them as experimental in case someone would not realize that fact.
If you know they are experimental, then so will most other people. I do not even know how you would sort out a far out method. For me, even though MMS or more properly Chlorine Dioxide is an experiemntal treatment, I do not consider it "far out". It certainly has more science and a known mechanism concerning bacteria than many antibiotics. It also has been around for a long time. So I would likely classify this differently than other people would. But I dig into the science behind many methods, where most people probably do not.
But, the bottom line is ther is no way to seperate the posts, so the rest does really does not matter.
D Bergy
Posts: 2924 | From Minnesota | Registered: Aug 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Good points, D Bergy, and well-said.
D Bergy has made some of my points, also.
It's hard enough to concentrate on getting well in whatever way we can..... but now we are supposed to focus on `public opinion', too? Sorry, but I think that's asking too much.
Let ILADS and LDA handle the PR issues; they are the professionals and the practitioners. I think we have our hands full just being patients.
And for the sake of discussion, assume that a new forum could be created in place of Computer Questions. As D Bergy pointed out, what exactly should go in there, and what should remain part of Medical Questions? We can't call it Experimental (since all chronic Lyme treatment is experimental); we can't call it Far Out; we can't call it Unconventional since that would entail everything but orthodox medicine..... I can't think of anything appropriate.
Like D Bergy, I don't think MMS is all that weird - it's just an old chemical being used in a new way (and a higher concentration). And speaking of MMS, which forum should posters use who are taking BOTH antibiotics and MMS? I'm not sure they will feel comfortable posting in either forum. They may want advice or comments from both sides of the aisle.
I just see more problems than solutions in splitting up Medical Questions.
And pardon my asking, but what does Pat Smith have to do with this? I don't quite understand that reference but would like to.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I posted here under hardynaka, but lost my password, so I'm posting now under Brussels.
I vote for separation of boards!
I still have lots to share with open minded lymenetters, but I WON'T discuss things here in the board the way it is.
That's the main reason I decided not to post anymore.
Color therapy, that I would never have believed, as well as muscle tests, that I would never have believed before I caught lyme, helped me immensely in my lyme battle. Another incredible treatment was psycho-kinesiology. I'm still a frequent user of it. I believe I'm in remission ONLY due to alternative treatments. I will never discuss psycho-kinesiology here the way the board is.
I'm traveling for fun, working part time, enrolled in professionalizing courses again to come fully back to active life, am following a private German course, am following dr. K's courses, so I'm fully back to life.
In no way I feel there's openess in the board the way it is. I just don't feel like coming back.
So I'm voting for separation. I know attacks won't stop totally, but if one person decides to consult the part of 'alternative' treatments, one knows what one will find (= non-conventional treatments). So I was hoping that that would make things easier for people who POST on alternatives.
I feel though there was improvement on the level of agressiveness and unpoliteness in the board in the last weeks/ months, for which I'm truly glad.
At the same time, there was some impoverishment in the quality of information from the side of alternative treatments. Just look at the threads of metal cleansing, laser therapy, nothing new comes out, threads die out fast. Agree with Gigi or not, she was an important source of info and got tired to post and get negative comments the whole time.
I think I would come back posting/ reading lymenet if she were more present.
For me, that am not in lyme treatment anymore, those were the themes I was wishing to follow. Another reason for me to read lymenet less.
Jimbob, was a great help for Buhner's followers. He was banned and even if accepted back, won't post again according to private emails. Another loss of an experienced person using an alternative treatment.
If one is mostly reading, it's comfortable to have everything together in one single forum. But if you're POSTING on alternatives, it's a very different story, as you'll often get aggressive comments.
People here in the last stages of healing lyme NEED lots of info on alternatives as they're not anymore in need of abx. My case.
People that are in the last stages of healing lyme are the ones that this board needs, because they arrived there and can share their experience to the ones that haven't arrived yet! But these are the people that are leaving the board.
People next to remission DON'T need info on abx, they don't need the board for survival anymore like all of us needed once (me at least, as lymenet helped saving my life).
What I need NOW, is more info on maintenance, how to keep my immune system in good shape, how to avoid a relapse etc. That's the info I don't find here anymore, because most people who posted about that left or lost interest in the board.
Traditional medical care knows NOTHING about prevention. It's not part of allopathic medicine scope. When you all get there (to maintenance), you'll see you'll learn very little from conventional doctors.
That's why I vote for a separation, so that newbies are protected (they will only get to alternatives if they wish, right?), and the oldbies on maintenance only can post!!!
Selma
Posts: 6200 | From Brussels | Registered: Oct 2007
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I understand parts of both points of view. I am looking at alternative more now than I did at first. Some llmd's include alternative anyway, and some don't. I want to know about all options.
Separate forums won't keep them separated.
Maybe a solution would be in the search abilities. Maybe I don't know the best way to use the search feature, but a search for "IV IG" brings up every word with "iv" and "ig" in it.
Is this alternative? I heard of an ID doc in another state that uses this on ALL of his lyme patients. Maybe it is traditional medicine, but using it for lyme is not?
As far as behavior, perhaps someone could write a sticky about that. Remind everyone to re-read and preview every post before posting, from another's viewpoint.
Many TBI patients (and caregivers) get grouchy, irritable, etc. (See recent posts about being related to co-inf) If we are venting, a gentle PM might get help. I have cut many parts of my posts out after reading them!
I also don't want to imply I know what I'm talking about! Our llmd said "Every discovery in medicine just brings to our attention the fact that there is more that we don't know"... "It opens a big black box of unknowns".
Clinical Logic
If an illness or syndrome is widespread and debilitating - search for a cure.
If an answer is unproven but appears logical - pursue it.
If the treatment is benign - try it.
If it doesn't work - nothing lost.
If it does work - great gain.
But it may be a placebo effect - So what?
But the "placebo" may modify an unknown pathologic mechanism - a discovery.
But the smart guys and the critics won't accept it - who cares?
To the doctor: If you try such treatment and it works, your patient will love you. The patient couldn't care less about your unbelieving colleagues because - he is well!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
My son has been on abx for over 2 years and is dedicated to including the natural. When he goes off the natural additions to treatment he does not feel as well. He especially is dedicated to LifePak Nano (antioxidants) and to extra pantothenic acid to decrease his herx symptoms.
-------------------- Rita Posts: 34 | From Quarryville, PA | Registered: Mar 2008
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posted
i don't post often. but i am interested in everything people are using. if i find its not for me, i go on to another treatment. i like using a combination of both alternative and traditional. seems like a big issue is being made over this. read what you want or need. then you can do your own resaearch. this forum has saved my life in the last 2 years. it's given me lots of info that i have found useful. we are all responsible for our own choices. let everything be posted. if someone disagrees, so what!!! give reasonable reasons why this didn't work for you and move on. i love reading all the different ideas people have
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
If you have Chronic Lyme Disease, every treatment you do is outside the realm of convention. None of it is traditional, so no one really has any "logical" right to purport they're the sole barer of scientific truth. So it would be wise to support reality as is, not merely your limited perception of it.
You follow the facts until they dissolve into hypothesis. When you no longer have options supported by science, you do what any good scientist (doctor, and patient) does, you start experimenting based on your risk tolerance level. You're responsible, period. We're all scientists. Some just have cute little plaques on their walls stating the obvious.
Drink your own urine for all I care. Swallow 6458 pills per year of antibiotics. Go ahead and hook up to an IV PICC line for 6 months and risk line sepsis and potential death under an LLMD's care. Meditate your way to Nirvana believing God or the spirits of those on the "otherside" will make you well. I don't care, because all of them are unconventional. Some have "some" valid circumstantial evidence supporting them, some have none, but depending on where you are in the process, it might be necessary for you to take big risks unsupported by facts. It's up to you to have the final say on what you do, no matter how many people have made recomendations to you or how many have told you what not to do.
Conventional, experimental, kooky, crazy, conspiracy, or alternative. They all have a right to be expressed, because that's how science progresses, it weeds out, it displaces old theories, it struggles, resists, and persists. You can try to bottle up the process, hell you can even hide the truth and obscure it with facts -- but science is controlled by personal bias and often entirely unscientific ideas, until that bias or idea can no longer be sustained by public scrutiny using scientific methods, and that can't be done until the proper tools are available to do so.
In the meantime we'll be swallowing months/years of antibiotics, bathing in epson salt, taking Samento, standing in Electromagnetic fields -- and many of us, will get better while you continue talking, talking, talking about your opinion on other people's choices.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I am using herbal protocals. When I have seen LLND and lyme herbalist they both have commented how well I am doing and how well I understand the disease. I feel bad because I haven't shared my protocals because of the negative behavior of some.
I think that if people are going to behave badly that they should be removed from the board for a time, so that they understand it is not acceptable behavior.
I am in favor of separate discussions.
Sunshinyday
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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ralph
Unregistered
posted
I see the hesitancy of some to post about non-medical treatment too. Antibiotics can kill bacteria, but they cannot change the internal terrain that lets the bugs express themselves.
I do know a number of people who are doing well with herbal approaches and I really feel detoxification is a very important issue as we essentially live in an ocean of chemicals and pollutants.
SunShinyDay - Sterling, MA ? I used to live in West Boylston in the 70s, fish Wachusett Reservoir and the Quinapoxet and Stillwater rivers and work in Holden. A small world !
Could you please, if you wish, PM me your LLNDs name ? I am a DC and here in OH we do some of the same typse of work that NDs. The law here is considered "broadscope." Thanks in advance,
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
If someone says something negative about something you write regarding Conventional or Alternative therapy, just ignore them.
You're here to recover from an illness, not to debate, match egos, or fight. So just skim over the stupidity and continue on your journey towards getting well and sharing information that can be of value to others getting well.
If you say "Drinking urine" helped you, great, post about it. If people want to get ****y, whatever -- that's their problem. You don't have to prove it works with chemical analysis and pubmed studies.
Post about your experience, and share what you want. Ignore and forget all the negativity, whether directed at your personally or your ideas.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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