On thing that has really been bothering me the last couple of days is what is happening over Benicar and Marshall's research. I do find value in his work, but I am concerned about how this information is being presented.

There are many different types' of people that come to this site. Most are suffering greatly from this disease. Some are desperate, some are just in search of knowledge, some are looking for a soap box to stand on and I am sure some are here for sinister reasons.

It is important to recognize that everybody is at a different level of understanding when it comes to this disease and medicine in general. Even with significant knowledge one might have a hard time comprehending this information because of how the disease affecting them.

I feel that we all have a personal responsibility to insure that what we say on here reflects true and accurate information. It is easy to get caught up in the hype and chalk it up to enthusiasm, but we all have to recognize that our words down the road could hurt someone.

The reason I first posted on Benicar, was because I was concerned about the talk that was going on about using Benicar for kids. It is important to know that Benicar is not approved by the FDA for use in kids let alone at the levels that have been talked about on here.

We all know desperate people might take desperate action if given the opportunity. There are easy ways to get this drug with out going through normal channels. I would hate to see someone go out there, secure a supply of Benicar from a not so reputable source, use it and get sicker or even worse yet die.

If you take a look at the Benicar threads, there are a lot of new people with few posts out there taking jabs at those that are putting up the caution flag. Then the jabs are being returned by the jabees. I find myself getting frustrated and wanting to get involved more in the back and forth comments, but I know that is not the right thing to do.

While it is good to have debate over subjects like Marshall's research or Benicar, the debate should reflect more facts and less opinion. The facts should be accurate, real and not hyped. Opinions should be kept to a minimum so as not to influence someone that might not have all the facilities to make an informed decision on their own. Of course this is my own opinion and does not reflect anyone else opinions.

I hope people especially new or innocent minded people dont get taken.
Its bad enough being sick and having your pockets emptied by conventional Drs let alone something unproven.

In desperation people reach for the quickest and most painless help which may not be so.

Just to add, I was a hopeless Lyme case, and may still be, but in the last six months I've been experiencing miraculous improvement using commonplace herbs, old-standby antibiotics, and supplements from the health food store. Yeah, the quantities I take every day are a little extreme, and the combination took years to figure out, and it's not working overnight, but every single ingredient is still well-studied, cheap (except for the abx), and backed by a lot of positive testimonials from other Lyme sufferers. In fact, I got a lot of suggestions from calling former Lymenet members who no longer post, because they actually got better on the protocols they wrote about.

No Lyme patient, no matter how desperate, is completely without options in mainstream medicine or in the more accepted alternative community. The main hurdles seem to be access and cost, not the inability of the market to provide beneficial remedies.

New Lymenet members might be well advised to try a little of a lot of different, more harmless-sounding protocols, instead of trying to force one protocol to be the magic bullet. Then at least they will see some improvement, instead of getting their hopes up over one expensive idea that might fail them.

There are, I believe, great things on the horizons-but couldn't we wait patiently until
our LLMD's-who are on the cutting edge of new tx'ments give us the green light to proceed---with caution.

If Benicar turns out to be the Gold Standard--the doc's-not ducks- are in tune with it and suggest it to us because OF THE FACTS-
then I say go for it.

All the hype is making me anxious and nervous for the desperate ones-like myself- who will want to-possibly-leap before they have really looked.

It is exciting information but if we don't put our trust in the guys who are trying to do right by us-with prooved tx.'ments ( yeah- some that haven't worked) then it can be risky.

Think I will keep looking upon the horizon lest I fall when the sun sets.

That being said, I find myself skipping some of the headers, so I don't find 'false hope' in some of the treatments. I like to take things slowly, adding one variable at a time to my treatment regime, to see which 'variable' (i.e. drug or herb) makes the difference.

I have found many of the posts to be extrememly helpful, but at times I am a bit suprised at the 'snaps' and 'tramples' that occur. Debates are good - if we all thought the same thing, then the progress of lyme research would be soooo limited.

However, as a new lymie (dx after a year of feeling crummy), and a paranoid one at that, I have been very careful with what I post - concerned that it may offend or receive a snappy response.

Therefore, thank you for this post and the reassurance that we are all looking out for each other and the progress of lyme treatment.

Everyone has been on a different path, different symptoms, some chronic, some new stage... but in the end - don't we all just want to feel better? Thanks again hwlatin - TO THE TOP!!

Can we all watch to see that no newbie loses out on answers to their questions? Let's all pitch in and make sure we give them the attention they need.

In fact, I agree so much that from now on I'm taking personal responsibility for your posts 'cause they're so good.

At some point I believe, and this is my own humble opinion, debate should be limited by the moderators or maybe the topics moved to a different main topic area where people can go and take the gloves off sort of speak.

It is bad enough we face a hostile medical community but to face it in a support group is even worse. This has gotten personal for some people.

It does set a bad example and will discourage those that are seeking information for the first time. I think we all need to step back and remember how we felt when we entered the board for the first time.