Please note..

Some of our members have been threatened recently... and you may want to be more careful.

Someone has been gathering our information and threatening Lyme Net members by saying they are contacting people's insurance companies, doctors, disability income sources, etc.... and plan to report them for whatever they can... to do harm to them.

Be SURE the information you post is NOT the kind that MAY backfire on you.

My suggestion is NOT to respond to questions that ask any personal information... and to edit out any personal information you have already posted.

We also have duckheads who read this board and pick out the worst quotes they can find to use in news articles... to make us appear not legimate.

Some of our members have been contacted by email also.. with offers to help them... so please do NOT give out personal information to those you don't know... no matter how "nice" they seem.

OK?

Glad you are watching out for our behinds..........

but not answering any of the questions asked back in some of the posts?

I have absolutely NO respect for anyone who would do such a thing. Talk about someone with no morals and a lack of decency.

I have been suspicious of someone for awhile now. Their posts/questions just don't seem right - especially when you look at all of them together. Asking one odd question afer another (at least it looks odd to me when noticing all their posts), asking for too much information, too much personal information, asking for very specific information, and being rude about it at times, etc. Others don't seem to have a problem answering the posts though, so I've not said anything.

I have been getting ALOT of email spam lately. Anyone else? This is the only forum I ever go on. Other than Lymenet and personal friends/family members, there really isn't a way for me to get on any spam lists...I've been wondering for awhile if it was possible that someone got my email address off of here. I hate spam with a passion...

I have received so much help from reading the posts and last week from posting myself and asking for help that I hate to see this misused but I guess that is always a risk.

Have had this experience before and it has discouraged me from replying.

I should clarify that the requests were posted on lymenet for the group, not me personally, and I replied privately.

How can this info be used against us, or are they just looking to do damage to Lymenet?

I do have to admit I am taken aback by the number of people who post their real names etc on this wide open forum.

In the world today you have to be careful and protect your privacy as much as possible. No one should post anything other than a net email.

Its impossible not to talk about some personal things on a forum like this when exchanging what you have tried, are doing, etc but everyone should have a user name only.

But it's PATHETIC that someone would come onto a site like this with the intention to do harm to folks who are already dealing with more than they can handle.

Preying upon the weak and sick makes you a pathetic excuse for a human being.

I would love to find these people and pursue some course of action...... like my foot in their rear.....

There, now I feel better.

i haven't takin' anyone to the woodshed lately.i could use the exercise...gary

Like the others, I just wanted to say thanks...

I've only been on this board since October and someone stands out in my mind. This person is asking for way too much information!

Why would someone want to spend time on this board if they weren't sick is beyond me.

It's draining enough just getting through a day.

I...against my better judgement replied...and got no answer.

And, yes...I gave them my phone number.

Only time will tell.

But...then again my phone number is posted here on this website and is always available to those that need it.

(They just have to look for it.)

Trout

quote:

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Originally posted by snowboarder:
Why would someone want to spend time on this board if they weren't sick is beyond me.

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IMO, we, or rather the knowledge we have about the "truth" about Lyme, is viewed as a threat to "them".

...the "truth" about Lyme being the answer to the question:

"Why is Lyme and other key infectious diseases not being researched, diagnosed and treated properly by the mainstream medical society when it's obviously such an epidemic and when it's obviously costing society mega-dollars due to loss of productivity and due to medical expenses?"

Well, the truth is that we don't really KNOW the truth. We can only speculate as to the answer.

But what we do know is that it makes NO sense that mainstream doctors

1) are unable to properly diagnose Lyme disease,
2) are unwilling to accept the disease,
3) are unwilling to treat the disease with proper dosages and long-term antibiotics,
4) would rather diagnose MS, fibromyalgia, CFS, and other just-as-little-understood-illnesses-as-Lyme, just to have an excuse to NOT diagnose/treat Lyme.

And that alone is a threat, cause MDs just can't give good answers to why they don't wanna treat Lyme.

They hide behind statements such as,

"I don't think you have Lyme because ."

"I can't treat you for more than two weeks cause abx is bad for you and you may foster super-bacteria if exposed to long-term abx."

"I don't think chronic Lyme disease is an actual disease."

So who is "them"? Who's watching us?

IMO, a whole lot of people: doctors, insurance companies, CDC, and...

most importantly the drug companies who have the most to loose here...by far.

I hope you guys can see that, no?

So let's make it difficult for these folks, ok?

Let's not mention any names, and keep your personal information to a minimum, and don't give out ANY personal information to anyone you don't trust 100%.

I've been contacted several times where someone asked for my phone number. And they even gave me theirs. Some even wanted to meet.

I can understand that some people may really want this kind of contact, and I try to be as sensitive as possible. But it's just not safe to be too naive.

To this day, I still don't know if these people were legit. I replied with an email to their questions but didn't include my phone #. I NEVER heard from them again. So in all likelyhood, they were not legit. But for sure they sounded legit. But there was always something suspecious about the emails, not that I can put my finger on it.

Michael

quote:

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Originally posted by cmichaelo:
Well, the truth is that we don't really KNOW the truth. We can only speculate as to the answer.

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Alright this might be a bit cruel but I just have to say it...forgive me all...

As for camp A and the insurance Co.s One should never judge something if you don't have all the facts.( a good Md. Or scientist would know this)

If someone wanted to do some REAL research as to what late stage or chronic Lyme... does, feels like, how painful it is, how it progresses, how it's effects your mind and emotions, how it affects your bank account, and finally how to cure it(or not) they could do it very easily.

Now camp A and the ins. Co.s take notes.

All they would need to do is have someone volunteer to be bitten by an infected tick... Then treatment would be purposely delayed three years. Just to solidify that LATE STAGE LYME disease diagnosis.

When treatment is started it is only 21 days of doxy. No other tretament given and no testing for coinfections would be done.

To me this would be the true test of a dedicated Dr. or Scientist.
http://216.152.71.145/films/garland/kotnis.html

This link is a Dr. who infected himself with a disease he was trying to cure. There is a more well known case but I can't think of it off hand.

Anyway if you were a Dr., Scientist, or Insurance Co. who claimed to be REALLY interested in Lyme disease, wouldn't you want to do some REAL research and not just pussy foot around it asking odd semi-lame questions?

A REAL man would do REAL research!...

LOL

But really come on already....

quote:

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Originally posted by daniella:

All they would need to do is have someone volunteer to be bitten by an infected tick... Then treatment would be purposely delayed three years. Just to solidify that LATE STAGE LYME disease diagnosis.

When treatment is started it is only 21 days of doxy. No other tretament given and no testing for coinfections would be done.

To me this would be the true test of a dedicated Dr. or Scientist.

A REAL man would do REAL research!...

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Thanks for bringing this up again. It always makes me smile!

Research assistant

quote:

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Originally posted by daniella:
If someone wanted to do some REAL research as to what late stage or chronic Lyme... does, feels like, how painful it is, how it progresses, how it's effects your mind and emotions, how it affects your bank account, and finally how to cure it(or not) they could do it very easily.

Now camp A and the ins. Co.s take notes.

All they would need to do is have someone volunteer to be bitten by an infected tick... Then treatment would be purposely delayed three years. Just to solidify that LATE STAGE LYME disease diagnosis.

When treatment is started it is only 21 days of doxy. No other tretament given and no testing for coinfections would be done.

Anyway if you were a Dr., Scientist, or Insurance Co. who claimed to be REALLY interested in Lyme disease, wouldn't you want to do some REAL research and not just pussy foot around it asking odd semi-lame questions?

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Holy moly! You ARE serious, are you not? Cause if this is a joke, I don't get it.

What you're suggesting is a far cry from REAL research.

And then you make it sound like it is all up to an individual scientist to decide if he/she wants to do real research.

Well, there are precious few scientists who can decide for themselves what they want to research. And I'm quite confident that those who are blessed with such freedom, have other topics besides Lyme in the number 1,2 and 3 spots.

And even if a scientist did your REAL research, who's to say that he/she would even develop significant symptoms after 3 years?

And even if he/she did develop symptoms, how do we know the symptoms are due to Lyme, and not due to some other common infectious disease?

Remember, a false negative for Babesia doesn't mean the scientist doesn't have Babs.

Your REAL research won't work with Lyme because it just way too complicated a disease to do a single experiment with.

Noone in the medical society is gonna pay any attention to a single data point when it's wrt Lyme. Not to mention that the poor researchers impartiality will be questioned.

To do your REAL research, you'd need at least 20 impartial people so you can do some statistics.

Good luck finding 20 totally healthy people who do not already have Lyme, coinfections, mycoplasma, Brucella, heavy metal problems, etc AND who are willing to get seriously sick to the extent that they loose their jobs and ruin the quality of their family lives for years?

It just ain't that easy!

it was just a thought....

i think I'll take a break for a while till everyone chills a little...

quote:

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Originally posted by daniella:
Relax..Micheal

it was just a thought....

i think I'll take a break for a while till everyone chills a little...

see ya...

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Puh! Glad it was just a thought. Cause you sounded so serious, and it took my breath away...

but it doesn't take much to take my breath away today...

I'm popping 17.5g/day Amox, 200mg Mino, Plaquenil, Artemisinin, supplements and I'm coming down with some flu like crap...

So pardon me if I was a bit harsh...

Peace Daniella

Under general is a post for a conference this month in California on lyme disease with some excellent speakers.

I have contacted some of the local papers and plan on contacting some of the better known papers in San Francisco, Los Angeles, perhaps Las Vegas, the Fresno Bee..help me out here guys.

Please start posting email addresses so we can send requests to have this conference advertised in the Southwest papers.

There is a press release that we can copy and paste onto our email on the post.

Thanks. Think of the people you might just be helping NOT go through what you went through.

A friend also copied and hand carried the flyer for the conference to her doctor here in California.

The doctor's comment was that they may get one person with lyme a year but they would try to send someone from their office to the conference.

I think that if they were more educated about lyme they might just find that there are really more of their patients walking around with lyme than they thought.

I am assuming I hit reply instead of new topic and that it has not shown up yet.

So, if you see it will you post it under new topic for me. Thanks.

quote:

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Originally posted by groovy2:
I am not scared- I just made a 20 minute TV
show on Lyme Disease featuring Me and my story that will show here in Austin and will air
over 50 times over the next year, I did shoot
it in silhouette tho because I dont want
to become the lyme guy here in town.
I just think its good to get info out
to help others--A friend of mine saw the show
today and said they new it was me -
by my Sexie Deep Radio voice-- that comment
made me feel good. ---Jay--

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