sorry if you are here because you have lyme disease... most of us do, and/or have kids who are suffering through it.

anyway, happy for newcomers, i hope you have some interesting things to bring to discussion

and - since you evidently like political discussions, i should warn ya not to take things too personal, thicken up your skin if need be and be please remember to be respectful...

have you read the newby links yet? very helpful, for sure.

another one that you might want to look through is this one by Danq from about 5 weeks back...
http://flash.lymenet.org/ubb/Forum4/HTML/004765.html

that link should take you right to it without having to bring it back up...

hope you enjoy our company over here, we are an interesting and lively bunch

Welcome to Lymenet and OT.

Good to have more in the conversation.

I think we are basically split here between left and right (politics wise) and 2 of us are Libertarians.

I think I am the only John Bircher/Libertarian.

Charles05

Huh...

Seems his level of insight is consistant on all the forum topics.

Mo

yikes, guess the scrolling was from good judgement!

quote:

---

Originally posted by LabRat:

Why would you all be so certain in your condemnation. There really isn't any proof that he is wrong is there. He just stated his thoughts, something we all do. I never even saw the post but I must confess, I have wondered from time to time about certain posters.

---

the post is in here, but i see several others since, in general. yup, he is obviously an a$$ wipe with ulterior motives, not just stating his thoughts... like you, and most of us do.
http://flash.lymenet.org/ubb/Forum3/HTML/012894.html

~ get your weeding done before the heat Labrat?

Now about Chas, thousands are cured with less than thirty days treatment, my wife and mother-in-law cured with one and two weeks of abx. Depends on genetics! If you carry HLA-DR4 your in for the long haul. Guess who got it! I don't talk cure anymore, just containment. There is so much we don't know and so much that doesn't work for everybody. Years ago we talked about the HLA-DR4 and -DR2 and then some more were found. These were found to make you a sitter for arthritis and chronic lyme. My fuzzy memory recalls these genes are close to the outer surface protein the keet carries on it's back that your system doesn't see it as foreign and doesn't attack. So any cure comes by way of abx. Have I still got this right or has everything changed?

Anyway, I think everyone just got a little too excited. Happens to me all the time, ask mo mo! By the way my most powerful beat the crap outta me because of mo. She said I was moaning her name in my sleep!

people will say we're in love...

Mo

the charles05 thing - if you read thru several other topics by and about him in general you'd see there is more to it than his beliefs on lyme treatment... curiosity got the best of me so i looked around. guess i have too much time on my hands today, haha!

not to mention the offensive remark above, even if there may be an inkling of truth in there anywhere. don't you think it odd that a newcomer, sick with lyme, would treat us all so disrespectfully just for the sake of stating his opinion?

a troll is a troll is a troll.

My knee and shoulder got so bad I installed an elevator in our home, then I started taking Doxycycline 100mg once a day and over a period of a year or so the knee and shoulder healed up.

Who knows?!

You told everyone here that they should not be suspicious of "Charles05".I trust by now you have changed your opinion.

By the way, about a year ago I was regularly harassed by "Charles05" because I am outspoken about my belief that the Steere camp are committing deliberate scientific fraud. He used to instant message me every day to insult and curse at me, and one day he started to brag that he had infiltrated LymeNet. He told me he used the name "LabRat" on LymeNet.

Well, I searched for that name, read a few posts, and they did not seem like Charles/Chuck's usual style, in fact they seemed pretty benign. And of course I thought, if Chuck is infiltrating LymeNet, he's hardly likely to confide in me what name he is using, is he? He's just blaming some innocent person to throw me off the track. So I forgot about the whole thing.

Now you have reminded me.

LabRat, where is your evidence that:

quote:

---

Originally posted by LabRat:

Now about Chas, thousands are cured with less than thirty days treatment, my wife and mother-in-law cured with one and two weeks of abx. Depends on genetics! ....

---

Can you point to any published scientific evidence proving that thousands are cured with less than thirty days abx because they have the correct haplotype? Also, are you talking about people who go to their doctor immediately on discovering a tick on their skin, or people in all stages of their illness?

I am less ill than most people I know with Lyme, however, I am highly skeptical that there are thousands cured so easily.

Also, remember there are **hundreds of thousands**, in the US alone, according to CDC figures, who have acquired Lyme since they started surveillance - millions,if you take into account the fact that they record only ten percent of cases diagnosed, and that there is also a huge pool who are not diagnosed and/or would not meet the CDC's strict reporting criteria . What percentage of the total Lyme community do you think is made up of those "easily cured" thousands you referred to?

Steere provided most if not all the research early on, remember he ``discovered'' Lyme because of all the kids developing arthritis around Lyme Conn. He became the most noted Lyme doctor in the world as I understand the story.

His fall from grace, as I understand the story, came about over the Lyme vaccine. The story goes that his research showed that 30% of the population exposed to the vaccine would come down with arthritis. Incurable arthritis where none was shown before. This was apparently proven during the trials. Somehow, he was able to testify that it was just theoretical and the vaccine was safe for the general public. It didn't take long for the arthritis ``side effect'' to be connected to the vaccine and Steere's research with the gene HLA-DR4.

A simple mistake or greed? I sure don't know, there was some talk of ``racketeering'', but I don't think anything came of it. He then, as the story goes, climbed in bed with the insurance companies, testifying for $1000 a pop that all Lyme could be cured in a short time frame, something like 15 or 30 days max.

Sooo, if you combine the above with my post to weez, that's about all I think I know about Lyme. Starting around 94-95, I was pretty aggressive in my search for answers and I didn't find many so I had to research on myself hence the name LabRat. Hope this will in some way add to your knowledge or help in some way and if you stumble on the magic bullet, do share!

As for Chas, I've never had a problem, I have seen him attacked and perhaps he lashed out at someone as most of us do at one time or another and I think we usually regret doing so. I enjoy his post as a conservative, I'm too lazy or don't care enough to dig dirt but I enjoy someone else doing it for me. I try to get by on common sense!

I haven't been much help but if you have a question and can wait on an answer, I'll do the best I can.

L. Ratone

Sorry I guess I missed your main question, of where is my proof that thousands are easily cured. I don't have any nor do I know if any even exist. When you consider the veritables that can be thrown in. Length of time infected, type of Lyme, Genetics, age, drugs used and dosage and maybe even type of work done. It just is not knowable! No one knows what percentage of the population has Lyme or how long it will take to cure it. It's not knowable! What is known, from a doctors point of view, once Lyme is diagnosed, experience would give you perceptions of the effectiveness of the treatment you use. What worked last time and how long did it take. If it takes longer this time, well, it took longer this time!Why? Someday it will be known, as with most things.
------------------

quote:

---

Originally posted by LabRat:

As for Chas, I've never had a problem, I have seen him attacked and perhaps he lashed out at someone as most of us do at one time or another and I think we usually regret doing so. I enjoy his post as a conservative, I'm too lazy or don't care enough to dig dirt but I enjoy someone else doing it for me. I try to get by on common sense!

L. Ratone

Sorry I guess I missed your main question, of where is my proof that thousands are easily cured. I don't have any nor do I know if any even exist...

---

Labrat, you are closer to the mark this second time around. There is no proof that thousands are "easily cured" because there is no long-term follow-up, and in general the diagnostic methods now being used by the majority of practitioners (who follow the Steere camp/IDSA approach) are wrong, so that they would discount the relapses of these "easily cured" patients anyway or misdiagnose them as "post-lyme syndrome" or something else.

Now about "Charles." Where have you seen him post, and in what name? Have you read his material on sci.med.diseases.lyme? Did you read the post where he abused the entire LymeNet membership, calling everyone here a mental case? Here is an extract from one of his posts on s.m.d.l....I'll let you decide for yourself who is the mental case:
-----------------

Chuck P Adams Mar 12 2004, 11:23 pm show options

Newsgroups: sci.med.diseases.lyme
From: [email protected] (Chuck P Adams) - Find messages by this author
Date: 12 Mar 2004 23:22:41 GMT
Local: Fri,Mar 12 2004 11:22 pm
Subject: The Glory of war. Patton,Bush, Iraq and beyond
Reply to Author | Forward | Print | Individual Message | Show original | Report Abuse

When I was a kid, I liked vaporizing ants with hammers and burning them with
magnifying glasses, acting like a microcosmic god delivering slow or fast death
upon ants.Like the thrill of victory or the taste of good food, a person can
know it, and call it "good" or "fun," but words can't convey feelings to those
who've not felt them.

Fun. That simple word stands for many things, including glory, thrill, and
"just for the hell of it." Our need for it is in our guts and in our genes. Our
ancestors have sought fun all the way back to the time when they were molecules
and single atoms. If there is a Purpose to life, maybe it is to enjoy
ourselves, have fun.

But fun isn't always premised on good times and prettiness. It is often
death and suffering, conquered nations or tribes, dead women and children....

Many human beings, most male human beings, seem to be born with this desire.
And we are effectively the priests of original sin, knowing how to direct
physical energy to build and to destroy. It is thrilling, and "fun" to have
that power, use it, or at least fantasize about it.
.....
America's military power being used to "shock and awe" the Iraqi forces and
people is instinctively attractive. Yes, it's cruel, but it sure is fun, and if
you don't enjoy enough of it on TV the first time around, it'll be fun to watch
on the History Channel for years to come. "

------------
It is
mostly regarded as crazy to assert that the prospects of war or economic
collapse or natural disaster are exciting and fun to contemplate, to examine,
confront; that it is wonderful to have been scared out of your wits, to have
dealt with the situation, and to have survived to tell about the thrill of it
all. Such a thrill is for many people a memorable high point in life.

Many human beings, most male human beings, seem to be born with this desire.
And we are effectively the priests of original sin, knowing how to direct
physical energy to build and to destroy. It is thrilling, and "fun" to have
that power, use it, or at least fantasize about it.

There is a scene in the movie Patton where George C. Scott as General Patton
looks out over a battlefield at the bodies and smoldering tanks after a battle
and says: "I love it so. God help me I do love it so. I love it more than life
itself." That scene, and that line, make the Patton character look insane, but
it also admits a basic truth. Fun, thrill, the glory of victory in a
hard-fought contest such as a war, a fist fight, an exhausting race up a steep
gravelly incline, we do so love victory and its symbols: gold cups, pennants,
scalps, ears, skins; a million dollars, or a billion, or more. Or The Button
itself in front of you -- or devastation all around.

America's military power being used to "shock and awe" the Iraqi forces and
people is instinctively attractive. Yes, it's cruel, but it sure is fun, and if
you don't enjoy enough of it on TV the first time around, it'll be fun to watch
on the History Channel for years to come.

"So George W., now be honest please: why do you want to attack Iraq?" "Well, .
. . to be as honest as I can, I wanna kill that mother****er." "Why, George?"
"Because I have the power to do it. Because I am the most powerful human being
ever -- and that is true! I wanna do it because it'll be fun, and God help me,
I will love it so."

That's acceptable as a reason for this war.
----------------------------------

Well, how do you find that? Do you still like "Charles" after reading that?

Lisa

Welllll! Huf, huf! You may very well know more about Lyme than I do, I assure you it wouldn't take much to put you in that position. I must point out that I have no interest in being right and you being wrong. I noticed you failed to produce the volumes of research to back up your stance that Lyme is virtually incurable. Genetics didn't get mentioned or anything else apparently considered by you post.

It appears you have a problem with Chas. That is between you and him. Not everyone meshes well with everyone else and the reason is the differences in background and life experiences. It's often necessary to conceal certain aspects of your experiences because they would seem foreign or ``weird'' to someone who had not experienced them.

A doctor treating ten people with Lyme, if after a few weeks five say they are ok and leave and if they never come back with a Lyme related complaint, would they not be considered cured? If the other five are still moaning and groaning, you couldn't consider them cured, could you!

Streere did trials and some did ``relapse'' and some never got well and were probable considered relapses. To solve this problem, you would have to find a common link that ties together those that relapsed. When I did this, the thing they shared was, guess what, HLA-DR-4 was the main one followed by two more that show up usually with the HLA-DR-4.

This all took place a very long time ago, there could be other factor that have come to light, I don't know and to be honest, I rarely go to the medical section anymore. I don't think I can rid myself of this gene and if I did, what train wreck would that cause?

Now once again, I don't know how many thousands have been cured, couldn't even give you an estimate! If no one were ever cured, we'd be stacked up like cordwood on the hospital steps! OK. Time for tea.

Some info from 1991

Excerpt from'SAFETY/EFFICACY CONCERNS RE: LYME VACCINE: LYMErix'
Joel M. Shmukler, Esquire

Two tissue types, HLA DR2 and HLA DR 4 have been specifically associated with a risk for chronic, destructive arthritic symptoms caused by lyme. These seem to be unresponsive to "adequate" antibiotic treatment, even when initiated promptly. It is theorized that this is due to an autoimmune mechanism, triggered by the infection, and likely because of molecular mimicry--the bacteria shares certain genetic traits with our own tisse; antibodies formed to attack the bacteria, attack our tissue. Similar associations have been made with a smaller percentage of people with other tissue types as well. Recently a specific mechansim for this autommunity has been proposed, and documented, for people with the tissue type HLA DR4.
Two Abstracts:
Title: Association of chronic Lyme arthritis with HLA-DR4 and HLA-DR2
alleles [published erratum appears in N Engl J Med 1991 Jan 10;324
(2):129] [see comments] Authors: Steere AC, Dwyer E, Winchester R
Source: N Engl J Med 1990 Jul 26;323(4):219-23 NEJM Home Page: http://www.nejm.org/ Organization: Division of Rheumatology/Immunology, New England Medical Center, Tufts University School of Medicine, Boston, MA 02111.
Abstract:
BACKGROUND AND METHODS. A small percentage of patients infected with
Borrelia burgdorferi have chronic Lyme arthritis that does not respond
to antibiotic therapy. To learn whether genetically determined variations in the host immune response might account for such outcomes, we determined the immunogenetic profiles of 130 patients with various manifestations of Lyme disease. RESULTS. Of the 80 patients with arthritis, 57 percent of those with chronic arthritis (12 to 48 months
in duration) had the HLA-DR4 specificity; only 23 percent of those with
arthritis of moderate duration (6 to 11 months) and only 9 percent of those with arthritis of short duration (1 to 5 months) had this specificity (P = 0.003). After the HLA-DR4-positive patients were excluded from each group, a secondary association was noted with HLA-DR2, which was found in 75 percent of the remaining patients with chronic arthritis and in 50 percent of those with arthritis of moderate duration, but in only 20 percent of those with arthritis of short duration (P = 0.023). Altogether, 25 of the 28 patients with chronic arthritis (89 percent) had HLA-DR2 or HLA-DR4, or both, as compared
with 27 percent of those with arthritis of short duration (relative risk, 22; P = 0.00006). These HLA specificities appeared to act as inependent, dominant markers of susceptibility. Nucleotide-sequence typing, performed in five patients with chronic arthritis, identified the HLA-DR2 allele as Dw2 (DR beta 1*1501), and the HLA-DR4 alleles as Dw4, Dw14, and Dw13 (DR beta 1*0401, DR beta 1*0404, and DR beta
1*0403, respectively). The presence of HLA-DR4 in patients with arthritis was associated with a lack of response to antibiotic therapy (P = 0.01). CONCLUSIONS. Particular Class II major histocompatibility genes determine a host immune response to B. burgdorferi that results in chronic arthritis and lack of response to antibiotic therapy.
Keywords:
Adolescence, Adult, Aged, Antibiotics, THERAPEUTIC USE, Base Sequence,
Biological Markers, ANALYSIS, Child, Disease Susceptibility, Female,
Human, HLA-DR2 Antigen, ANALYSIS, GENETICS, HLA-DR4 Antigen, ANALYSIS,
GENETICS, Lyme Disease, DRUG THERAPY, GENETICS, IMMUNOLOGY, Male,
Middle Age, Support, U.S. Gov't, P.H.S.
Language: Eng
Unique ID: 90309909Title: Association of treatment-resistant chronic
Lyme arthritis with HLA-DR4 and antibody reactivity to OspA and OspB of
Borrelia burgdorferi.
Authors: Kalish RA, Leong JM, Steere AC
Source: Infect Immun 1993 Jul;61(7):2774-9
Organization: Division of Rheumatology/Immunology, New England Medical
Center, Tufts University School of Medicine, Boston, Massachusetts 02111.
Abstract:
Chronic Lyme arthritis that is unresponsive to antibiotic therapy is associated with an increased frequency of the HLA-DR4 specificity. To determine whether the immune response to a particular polypeptide of Borrelia burgdorferi may be associated with treatment-resistant chronic Lyme arthritis, we correlated the clinical courses and HLA-DR specificities of 128 patients with Lyme disease with their antibody responses to spirochetal polypeptides. Antibody reactivity was determined by Western blotting (immunoblotting) with sonicated whole B. burgdorferi and recombinant forms of its outer surface proteins, OspA and OspB, as the antigen preparations. Of 15 patients monitored for 4 to 12 years, 11 (73%) developed strong immunoglobulin G responses to
both OspA and OspB near the beginning of prolonged episodes of arthritis, from 5 months to 7 years after disease onset. When single serum samples from 80 patients with Lyme arthritis, were tested, 57 (71%) showed antibody reactivity to recombinant Osp proteins; in contrast, none of 43 patients who had erythema migrans or Lyme
meningitis (P < 0.00001) and 1 of 5 patients who had chronic neuroborreliosis but who never had arthritis (P = 0.03) showed antibody reactivity to these proteins. Among the 60 antibiotic-treated patients with Lyme arthritis, those with the HLA-DR4 specificity and Osp reactivity had arthritis for a significantly longer time after treatment than those who lacked Osp reactivity (median duration, 9.5 versus 4 months; P = 0.009); a similar trend was found for the HLA-DR2 specificity. For other HLA-DR specificities, arthritis resolved within a median duration of 2 months in both Osp-reactive and nonreactive
patients. We conclude that the combination of the HLA-DR4 specificity and OspA or OspB reactivity is associated with chronic arthritis and the lack of a response to antibiotic therapy.
Keywords: Antibodies, Bacterial, BLOOD, Antigenic Determinants, Antigens,
Surface, IMMUNOLOGY, Bacterial Outer Membrane Proteins, IMMUNOLOGY,
Borrelia burgdorferi, DRUG EFFECTS, IMMUNOLOGY, Chronic Disease, Drug
Resistance, Microbial, Human, HLA-DR4 Antigen, ANALYSIS, IMMUNOLOGY,
Lyme Disease, DRUG THERAPY, IMMUNOLOGY, Support, Non-U.S. Gov't,
Support, U.S. Gov't, P.H.S.