``You will observe with concern how long a useful truth may be known and exist, before it is generally received and practiced on. -Benjamin Franklin

So, my hard work has been archived in the general section...get this...because it was drawing too much attention???

Good reason!

When the moderators of this group listens to the complaints of questionable characters such as JRW and his fellow ramblers it's easy for me to comprehend their bias.

"Unthinking respect for authority is the greatest enemy of truth."

~Albert Einstein, physicist, Nobel laureate (1879-1955)

We definitely have enemies of truth among us and some of them moderate this group!

Oh, it's sad to see that again, we are our own worst enemy. Just as this disease turns our own immune system against us, we are our worst enemy!

What a hypocrite you are!

Her reason for doing so was because of the offensive personal comments and attacks which were contained within those topics.

We all worry about the effect that these pissing contests have on our beloved "newbies" as well as any "lurkers" out there who are not posting. We don't want to offend them or scare them away from LymeNet.

I applaude her decision to do this because I worry about newbies who come here looking for immediate help, especially when they are too ill to wade through a lot of topics. We must consider their needs above our own, because we are more experienced at finding things here at LymeNet.

Steel is tempered in extreme heat...

The best work comes from intense debate...if the objective of the medical forum here is emotional support then I guess I'm frequenting the wrong group.

From the hundreds of supportive emails that are bombarding my inbox...you are wrong!

I hope you sleep well at night knowing that you've helped stifle the best work brought to this group.

My objective it to help others stop suffering....what's yours?

Shame on you!

I just think it's funny seeing people yell at one another. It's just like anything else in the world - everyone has their own ideas and opinions and some people get really upset over it.

I'm more like: 'what the heck are these people talking about' more than anything else.

I've learned alot from this board. And I've had some good laughs too.

quote:

---

Originally posted by free2reckon:
TXLM,

Steel is tempered in extreme heat...

The best work comes from intense debate...if the objective of the medical forum here is emotional support then I guess I'm frequenting the wrong group.

From the hundreds of supportive emails that are bombarding my inbox...you are wrong!

I hope you sleep well at night knowing that you've helped stifle the best work brought to this group.

My objective it to help others stop suffering....what's yours?

Shame on you!

Scott

---

Scott,
It took me a very long time to become adjusted to the "culture" (social customs) here at LymeNet when I first began participating.

This forum is "of, by, and for" the needs of the persons who participate in it. The vast majority of them are very ill, and these topics were becoming too upsetting to them, because they were generating more heat than light.

This always happens anytime a new therapy comes on the scenes. There are a lot of emotions involved. There are always some who are enthusiastic, and there are others who worry about long-term safety issues. That's what's been going on this time, too -- except that not everyone seems to remember to be tactful in how they state their concerns.

You are accustomed to working among healthy persons who comprehend this stuff readily. This group at LymeNet suffers from a lot of brain fog and also from Lyme-irritability. Please take that into account before criticizing anyone for failure to appreciate your hard work in our behalf.

I have strong opinions about the move. If you think something is taboo or upsetting, don't read it. It was actually a guilty pleasure reading all the replies. How did it get so many replies? Because whether good or bad, people had something to share. Communication is good in every relationship. Any therapist will tell you that and they'll also tell you that the topic isn't always what you want to hear. Well poor baby.

quote:

---

Originally posted by Herx:
If you want the opinion of a newbie, here I am.

If a new person has a medical question on Benicar then they should be able to go to the "Medical Questions" forum and get the info. The move was wrong anyway you look at it. I've read just about every reply to the topic and found no offense. Maybe healthy disagreement, but nothing out of line.

---

This has been the point of my involvement on benicar. Medical Questions?

The protocol being pushed is not made up from a (Medical Dr.) The thing should be investigated by scientist's in the medical field.

Not a (Phd) associated with another field.
Let me put it this way when my car breaks down I dont take it to a painter or carpenter.

I would take benicar if it were approved for treatment of lyme and the benefit outweighs the side effects done by clinical trials.
Then only if I felt comfortable with it. Remember LYMERIX vacine.

------------------
Do unto others as you would have them do unto you.

Your super childish tantrums are causing a great disservice to the message you are bringing to this board. THIS is what is causing me concern.

I have some real questions and I don't feel they are being addressed, all you do is repeat "believe me, trust me and my judgement, I know, I have the background, Benicar is completely safe, no side effects, give it to children, the best thing since sliced bread, the CURE etc"

Now some of my questions:

How can you be sure that by blocking angiotensin receptors you will not be blocking an important part of the response of the immune system, which MIGHT have a role to play in keeping some pathogens at bay for eg?

Please, do not just repeat, "immune system stuck in Th1, immune dysfunction corrected by Benicar,etc" this is all theory, good enough to test it out not enough to claim what you claim it does.

You and Penny feel better after a few days on Benicar. OK but we don't know what is happening.

Some people have reported very similar things on cortisone, they felt a lot better yet their immune system was not being reset to better fight the infections, it was just being suppressed, so no inflammation but no fighting off the infections either.

Another query: many of us have low BP and it should be of concern to us if we want to use such a high dose of an anti-hypertensive drug. BIG CONCERN here, and I cannot understand why it is being brushed off so lightly.

I nearly died when I was put on beta-blockers to try and cover up my Lyme-caused arrhythmiae. My BP dropped dramatically low, so I think we should definitely be careful.

I think these questions are valid and I am not trying to hurt Scott's feelings.

I might want to try Benicar myself, but I must say, Scott's reactions to queries is putting me off.

"So, my hard work has been archived in the general section"

If you are indeed "free2reckon" you are also presumably capable of reckoning - otherwise known as thinking. Which should give you the ability to realize that the General section is not an "archive" but a vibrant and well-attended discussion area.

"The best work comes from intense debate..."

So go debate your topic - it hasn't disappeared. But in so doing, please try to keep your discussion civil, and avoid attacking those who merely disagree with you.

My objective it to help others stop suffering....what's yours?" (said to TXLM)

That is an implicit attack - questioning the motive of someone disagreeing with you. Actual discussion would be to address her statements, not her motives. But you knew that, didn't you?

That last post is an absolute lie!

I brought more scientific evidence for this work than anyone....look at my posts!

quote:

---

Originally posted by free2reckon:
Nelly,

That last post is an absolute lie!

I brought more scientific evidence for this work than anyone....look at my posts!

Scott

---

If it was, then, this is not the place I can see as coming to and getting information anymore.

This is upsetting me very much as I wasn't on most of the day yesterday and wanted to catch up with that thread.

quote:

---

Originally posted by free2reckon:

``You will observe with concern how long a useful truth may be known and exist, before it is generally received and practiced on. -Benjamin Franklin

"Unthinking respect for authority is the greatest enemy of truth."

~Albert Einstein, physicist, Nobel laureate (1879-1955)

We definitely have enemies of truth among us and some of them moderate this group!

Scott

---

Scott,

And just whose authority is being disrespected here? YOURS?
And by what authority do you say these things?

And just what is truth here?
Would you care to elaborate?

I've read your posts, and why should I believe anything you say as being TRUTH?

Better yet, WHY SHOULD YOU BELIEVE ANYTHING THAT I SAY AS BEING TRUTH?

You don't know me, and I don't know you.
I have never met you. Newbies on this site have never met you.

At best, only a handful of the lymies here even know you personally.

I do not know how many times you have used the CURE word with using Benicar,

and I hope that you have edited out those comments from your previous posts,

but there is NO proof that Benicar is a cure for anything. There is no truth in this statement.

Dr. Marshall's work with Benicar (part 2)

Long-term antibiotic therapy for Lyme isn't even endorsed by our governmental health agencies. And like antibiotics, Benicar is a prescription. Scott can push all he wants and it's not going to make a physician prescribe something he feels uneasy about. What are you talking about? Your arguments have been nonsense throughout all Benicar threads.

Let the medical community follow Marshall's discovery. I'm not here to talk about carpenters and cars with you.

Nelly, your posts have consistently been sarcastic and viscious. I expected nothing less based on reading your past Lymenet posts. Ask your doctor about it and then come back. If he feels it's not right for you than he probably has good reason. And so what if Scott is putting you off, this isn't Nellynet.com

I understand how disappointed and upset you must feel about having your topic moved. However, I think that this could prove helpful in the short term and perhaps the long term as it will allow the new people to find what they need without being run off by heated debate.

Because you are not a difficult late-stage neuro-borreliosis patient yourself, I doubt you can comprehend the degree of psychological pathology that is expressed with this disease process. I have been there myself and I have been here in this forum a long time and I do understand it.

These patients can find it difficult if not impossible to try and comprehend such text, but if it is in medical they will chime in as best they can and tempers will flare. This is very harmful to some.

As for your personal attacks on TXLM, well, she has worked very hard to understand the premise and is fascinated by the material you've presented. I speak with her by phone on a regular basis, because I'm not a fan of e-mail.

As far as her political savvy with regards to chronic lyme, she attended the state hearings on LD where I also participated. If you have any doubts that politics do not play a key role in this, then contact people who have been involved. Remember, if it weren't for their hard work, you wouldn't have a diagnosis and doctors who are willing to treat you thus far.

Now, I do think the topic move might allow some patients to cool off and others to drop out of the discussion so that those of us who are eager to learn and pursue this might continue discussing things in a rational manner.

Then again, if you are going to insist on making rabid attacks on the people in this forum, it does lead one to wonder about your state of health and whether it is really helping you that much.

Scott, you might be thinking I doubt your hard work and integrity. Not at all and not for one minute. However, your attacks and outbursts are getting in the way of any truth that might be present in the material you present. That is a detrimental to all of us and I hope you will take that into consideration. Since I know you are feeling better and are seeing much improvement, I'm placing the onus of behaving better on you and I'm hoping that the sickest patients who are prone to temper tantrums will scroll on by for the these topics.

As for passion, it will take more than just passion to get these ideas across. I wish for just one minute that I could have your fine medical background so that I might be allowed to present things to my doctor in a peer-to-peer fashion. As that is not the case I must work within the context of that relationship without sacrificing the trust that has been so slowly built and could be so easily destroyed.

My father for instance was easily identified and treated for Lyme disease on the two occasions he contracted it. He is a PhD in a scientific field and his doctor - who was also my doctor did everything he could to help him. When I came in the same summer, our same doctor dismissed me with a smile because I was a petite, attractive young women who just needed to get toughen up and get a life. Two specialists have told me that I should get married and have babies when I couldn't work because that would take my mind off of my problems.

You obviously cannot even imagine what the late-stagers like myself have been through just trying to find help and someone to believe us. That process nearly killed me, but I'm still here and I'm finally doing quite well. I am still searching for answers that will not leave any of us behind.

From the depths of my heart I am imploring you to grant us some understanding here. I know you feel attacked, but we have all been there and we must get past those feelings and the urge to lash out or we will get nowhere.

quote:

---

Originally posted by dmcbrayer:
Scott,

And just whose authority is being disrespected here? YOURS?
And by what authority do you say these things?

And just what is truth here?
Would you care to elaborate?

I've read your posts, and why should I believe anything you say as being TRUTH?

Better yet, WHY SHOULD YOU BELIEVE ANYTHING THAT I SAY AS BEING TRUTH?

You don't know me, and I don't know you.
I have never met you. Newbies on this site have never met you.

At best, only a handful of the lymies here even know you personally.

I do not know how many times you have used the CURE word with using Benicar,

and I hope that you have edited out those comments from your previous posts,

but there is NO proof that Benicar is a cure for anything. There is no truth in this statement.

DMC

---

I am repeating this from another post...please read it and understand there are those of us who really need this.

Scott, thanks for all you have done on this topic. I just, personally, would love for all the nay-sayers would just SOB...that would make it much easier for us who are doing this protocol to be able to read your posts without all the ya-yaing.
I am desperate. I have gone the IV Rocephin route for 4.5 months only to come out worse then I did another 15.5 months of various abx and combos...TO NO AVAIL AND EVEN HAVE STEADILY GOTTEN WORSE THROUGHOUT THIS WHOLE ORDEAL.

Come on guys, until you have tried everything conventional through your LLMD and still are not getting better, then why not this??? Huh??? Just why not?

My doctor prescribed Benicar for me and you have to have a prescription to be on it, so what is ya'll negative points here. I don't see it unless you guys just love to argue.

All of you who are against this PLEASE SOB, PLEASE so that the ones of us doing this protocol can report our experience with this which btw, is a trial of sorts in and of itself.

I'm glad to be doing this. Let's face it the majority of the medical isn't for massive doses of long-term abx anyway, yet are some of you doing that. Prehaps the majority of the medical community was right all along.

GET A GRIP...SOB!!!!!!!!!!

Rosemary

Good Day!!!

I mean, if I had cancer - especially cancer that is usually uncurable - I'd so be willing to use experimental drugs/experimental therapy if I thought it might save my life. I'd try anything and everything until my last breath.

If I thought Lyme might take my life (or it got so bad that living became a daily struggle), I'd be willing to use experimental drugs and therapies, also.

It sounds like Benicar might be in that group - experimental.

If people have tried everything else, you can't really blame them for trying something that is considered experimental. You never know with experimental drugs and therapy.

quote:

---

Originally posted by Herx:
Treepatrol,

Long-term antibiotic therapy for Lyme isn't even endorsed by our governmental health agencies. And like antibiotics, Benicar is a prescription. Scott can push all he wants and it's not going to make a physician prescribe something he feels uneasy about. What are you talking about? Your arguments have been nonsense throughout all Benicar threads.

Let the medical community follow Marshall's discovery. I'm not here to talk about carpenters and cars with you.

Nelly, your posts have consistently been sarcastic and viscious. I expected nothing less based on reading your past Lymenet posts. Ask your doctor about it and then come back. If he feels it's not right for you than he probably has good reason. And so what if Scott is putting you off, this isn't Nellynet.com

[This message has been edited by Herx (edited 13 May 2004).]

---

Wrong they treat tuburculosis with long term and at this very moment a friend of mine is being treated for the rest of his life with abx's for a form of cysticfibrosis by John Hopkins (eeeeuu I hated qouting them forgive me TC) Also everybody else thats on them right now.

Trout

I'm very interested, but find the personal attacks, which are being used by ALL sides, are so disturbing that it is hard to filter out the useful information.

Gee Trout, that was enlightening... and a perfect example of how to make a discussion more polarized and unpleasant.

"Because your stopping this free flow of information...may just get out of hand enough to shut it down completely!"

I have a big problem with equating dissent to "stopping the free flow of information" - because it is that free flow of information - in both directions - that comments like yours (and the attitude expressed in the former quote) are attempting to put down.

Free flow means able to flow in either direction. That includes dissent.

I'm embarrased, disappointed and frustrated with allot of people, Free included, but many others as well.

Scott, to now go and delete all your posts is just unbelievable.

Yes, people said things they shouldn't have, but so did you..

Then we carry on, some of us really interested in the subject, struggling to learn, asking others to please discuss..

Some of us were looking at info, not jumping all over the idea, not dissing it, either. Just learning. Seems reasonable to me. I do that with vitamins, for crying out loud.

You said you wanted to help by providing info, and now take it away in a fit..

This is really wierd.

And noone else "anti-Benicar" chime in with me here, both sets of assertion yay or nay were obstructing the persuit of answers, totally lacking in intelligent contribution..I'm fed up with both sets of comments from the peanut gallery.

Are we so incapable of rational FREE discussion with ideas flowing (as DanQ so eloquently describes)??

Lyme patients are nothing if not resourseful,
active learners. I'm grateful for the information brought to light, but don't think those of you who brought it are the ones to help very much in the quest for answers.

I hope some of us can continue to look at the information, and make sense of the theories as they may or may not pertain to our illness.

Mo

Thank you, Scott, for putting Benicar out there for us. It may not be for everyone, but it's nice to know about it.

I look forward to more information from our pioneers, then I will make my own decision.

Sue

So...we take this info to our LLMD's ...or not. It's our choice. The info has been provided....just let this run its course.

I would like to read the results from those trying this...but so far we only have a handful of "real Lymies" doing so??? If there are others, please speak up.