When Fear Rules Us

[LymeEnigma]

Exactly. These people can claim as many years of experience as they want to; that still does not mean they know anything more than any other doctor out there. Further, let's say a LLMD learned everything he knew from a certain LLMD who has a reputation for fudging facts ... how can we even say what s/he learned (or what s/he currently practices) is valid? No one has even been able to prove that the Striker panel really indicates chronic Lyme....

I had suspicions as to the integrity of my LLMD before I even left his office. Like some here already know, my husband is an ex-street magician and I used to read Tarot for grocery money. While Haku always knew that what he was doing was putting on a show, it took me years to realize that I was fooling both myself and those I read Tarot for (because I was really, really good) ... unfortunately for the LLMD we went to, Haku caught on immediately to a few carnival tricks Dr. H used to "back" my diagnosis, and I was able to read the subtle changes in his body language when he would begin to lie (the film of sweat that glossed over his entire face when Haku questioned the eight-month babesia treatment was a good clue ... the shifting eyes and his refusal to look my husband in the eyes were also both pretty good indicators).

Yes, he prescribed me antibiotics, for which I am very grateful, but -- no -- I would not go back to him, just on principle. It might be that these people are our only hope right now ... right now, but we can't fight for what is right while going to these people on the side at the same time and expect anything to change.

And change is what we all want, right?

[jeezld]

Neither of my son's LLMDs are anything such as you describe LymeEnigma. The LLMD neurologist my son goes to doesn't use IGenex for testing, his lab of choice is MDL. To tell you the truth I am not even sure of either of them belong to ILADS or LDA, I don't care and didn't look.

LLMD is obviously a designation given in the Lyme-patient-community for doctors that have experience treating tick-borne disorders and are willing to make a clinical diagnosis, as far as what I understand it to mean, and hopefully they read medical journals and attend conferences to keep updated. I know mine do. They are also professors at Yale University in Psychiatry and Neurology. As in ANY population you have your sleazeballs and crazies, and that goes not only for the doctors, but the patients as well.

As far as Dr. B and his lack of quantitative reference sources: just wondering if this is more a function of the undeniable monopoly that Steere et al, have in academia, government agencies' grants and research funding, and on peer reviewed journals, than a function of LLMD quackery.

Just look at my recent post with the new CDC released Lyme infection numbers in New York State alone (looks like the CDC is suggesting it may be close to one million people in NY from 1990-2006) and look at your recent posts concerning Dr. Fallon's study at Columbia University -- located right in NYC -- and how few people were picked to participate in his study. Just speculation on my part, but I see a problem that doesn't have to do specifically with Lyme infected people and the MDs who want to treat them. I see a problem with the bigger picture here, and the few rotten apples that are called LLMDs are red herrings in my opinion.

[LymeEnigma]

I'm not saying that all LLMDs are bad; much to the contrary, I believe there are a few really good ones out there. What I'm saying is there are a lot of rotten apples mixed in with them, and they make the whole lot of them look sour. If we were to stop backing the rotten apples, leaving only those who are completely legitimate, then our cause would suddenly become all the more stronger. I'm saying that I believe we need to be choosy about with whom we decide to ally ourselves, and not settle for an opportunist simply out of desperation ... because it will only hurt us in the long run. And I believe that there is a reason some of these people are not getting the funding they want ... because they've abused it in the past and the NIH is done playing their games.

Don't you see that the IDSA, and the medical community in whole, takes us as a joke because of the fools we have running our front lines?

[jeezld]

I am not disagreeing with your points, but I am disagreeing with the conclusions. I see a different cause and effect at play than you do, that's all.

The highly politicized climate for Lyme patients and the supply-vs-demand for doctors, legitimate and otherwise, to treat them adequately didn't begin in the "Lyme community" or with their "LLMDs." These things are a direct result of the climate created in the mainstream medical community, not the other way around. Do I agree that they hurt the "Lyme cause?" Yes. Will getting rid of these rotten apples make it all better for Lyme patients? Personally, I really doubt it would change anything. They are just an easy and convenient target.

[LymeEnigma]

I guess time will tell....

[enochroot]

Excellent discussion on both your parts. I can only add that my recent visits to
three well regarded well credentialed IDSA docs left me with a distinct impression
as to the depth of hostility they all held to the very idea of a "lyme doctor" and
only one of the three even attempted to try to help me find an alternate cause
for my miserable medical condition. The quacks on the IDSA side are safely garbed
in orthodoxy.

[LymeEnigma]

This "othrodoxy" observable on both sides is evidence of just how bad this situation has become. Each side is downright hostile about the other, unwilling to consider the findings or hypotheses of anyone who belongs to the opposing camp. It's downright sickening. Like I mentioned in the Lyme Activism thread "A Different Approach?" I personally believe that the approach the Lyme community has been taking for the last 25+ years needs to be restructured, even if just slightly, or we'll wake up one day and realize that another 25 years has gone by, the same arguments will still be going on, and people will still be paying specialist and quack alike exorbitant amounts of money until they go bankrupt just to keep their antibiotic supply coming in.

I had such a horrible experience with an infectious diseases specialist, I will likely never see another. "Hostle" is the only way I really can describe the demeanor he had toward me once I mentioned Lyme disease. He insisted the doxycycline I had taken before I saw him was more than enough to eradicate any Lyme infection I might have had, but made sure to let me know that there was no way the tick I found on me carried Lyme, as "there is no Lyme disease in Nevada." He insisted I needed a rheumatologist, not an infectious diseases specialist, and he refused my request for co-infection tests. I found out almost a year later that I had babesia WA-1.

I don't think that just because one camp is wrong about many things, that necessarily means the other camp is completely right. I think we need to take more of an eclectic approach if we're going to see any advances; we need to fix our reputation ... and then blast them with enough reproducible, peer-reviewed, science to set in place the changes that actually do need to be made. Most importantly, we need to be objective about the data that comes our way, not allowing our take on what we find too be too terribly colored by our own preconceived ideas.

[itsybitsyone]

We know both sides are wrong to some degree.

Cave has been very happy, to my understanding, in dealing with "Ralph" (I love calling him Ralph) as her LLMD. And I am glad...and I don't know why she has had to have been on the abx all these years but I do know that if it helps her and if it keeps her well and doesn't make her more sick, I am all for it.

And I applaud HIM for keeping her on them if that's what works for her.

I like mine well enough. The fact that she had Lyme herself, that her child is being treated for it, and that other people she knows have been treated is a plus for me. In fact, if she did well enough on abx that she can do all she does with having had Lyme, there has to be something to the ILADS way...

However, I am in agreement that lack of documentation hurts the cause. I don't remember where I read it, but I do believe that I did read that the original Dr. B is using his retirement to amass data to back up the ILADS way....that he is supposed to be compiling evidence based case histories and unofficial studies. I also know that at one point the ILADS docs did start a Tick Born disease peer-reviewed journal through the Lyme disease foundation...but that crazy Ed McSweegan guy who got in trouble for threatening them helped put the kabosh to that, if I understand the history correctly. Have you ever read some of the case studies in that old Journal? Some of them are rather interesting, and even if it is from the ILADS viewpoint, many of the other studies are slanted to the IDSA viewpoint...at least it is more information.

I think nut jobs like Demarco and the other female doc from NJ who contends her doctor husband died of Lyme (I don't know one way or the other) who uses questionable street-fair muscle testing also hurt the cause. I also did tarot phone readings for a while when I was quite poor, and also spent a lot of time in the "culture" when I was younger. Some things are authentic...some is just for show and entertainment factor. So, I also, know a trick when I see one.

I think, also, popular message forums out there that have people advocating everything from LED to Urine therapy to EMF sensitivity to who knows what also bring down the barr of validity to the cause. I have read some threads on other boards that make "Lyme" patients look like bigger wack jobs than some of the looney docs out there! When people like Enigma, Cave, or Cobby stand up for real vs. fantasy, they get ostracized from the "Lyme" community for being intelligent and for standing up for science and reality...or just for making a damn good joke...

We knew in the late 80's and early 90's in NJ that if you treated Lyme before you got sick, you wouldn't get sick. If you got sick, you would be sick forever. Nothing has changed in 25 years, and that's the problem. However, the quacks and the pseudo-patients DO damage to how seriously this disease is taken. In my opinion.

I would take too much treatment from an ILADS doc...knowing that I am somewhat in control of how much I take of what...over too little treatment, and the hostility and degradation, from an IDSA doc. And therein lay the problem. At least, for me.

Sorry for the negativity. I am not in my happy place.

[cobweb2]

I read and read and read through all the posts-and you're final comment...
"I am not in my happy place." summed it all up perfectly.

Made me chuckle. Thanks.

I'm in my "should be cleaning but I'm at the computer instead" place.

I don't want to miss anything. ;D

[LymeEnigma]

I don't think you are being negative, Nancy; you're just being honest. Many of us are caught between a rock and a hard place ... but that doesn't make this situation right....

[itsybitsyone]

Well....

Its an awfully large rock.

Most people don't SEE the hard place...or not understand it....starting to frustrate me. Generally I tend to be rather even keel. But its the being alone that gets to me...I mean, I live with my mom and my stepfather and kid...I am rarely ALONE in the physical sense. But, being unable to maintain friendships, relatioships...getting to me.

And my face keeps twitching today...not my eyelid,,,one side of my face...weird....

[LymeEnigma]

I understand the feeling ... alone in a full room. I think that sense of isolation is common with people like us, who are often misunderstood, underestimated, or met with apathy regarding everything that we go through. And then, of course, being in pain or discomfort magnifies everything.

I'm sorry your face is twitching ... I know how annoying that can be, especially when it persists.

[cobweb2]

My face only seems to twitch when I am on Artemisinin.

Fess up though Itsy-are you really twitching? or flirting with the guy at the water cooler? ;D

PS-I am also more prone to twitching when overly tired.

Also ,I'll tell you the nitty gritty of my story, via email or pm, if you tell me yours! The only reason I'm not doing it publicly is because I don't want people to think I'm a drama queen.

I do feel for you though. Just knowing what little I do.

Cobby

[cave76]

What makes an llmd LL?

In my llmd's case, and I'm just making some assumptions because I never asked him that exact question----- I think it's having a mind that is eager to accept challenges.

I think that critical thinking is just a normal part of his persona. He was also a forerunner in this area in the AIDS epidemic--- before Lyme his practice had a lot of AIDS patients.

Not afraid of a challenge, intellectually.

I pretty sure he, like me, 'does not suffer fools gladly'. LOL (I could tell some anecdotes, but won't.)

A close friend of mine (Lyme) 'discovered him' and got in touch with him. I don't know the details of just who led who. I'm sure he was well on his way to being knowledgeable about the Lyme Enigma before that.

The rest is history.

[In case there are some newcomers to Lyme here---- being an ILADS member does NOT always mean that s/he is 'our friend'. ]

A good example is Dr. Klinghardt!!!! (I'm posting his full name, because I can't under any circumstance consider him one of our LLMDS)

CaliforniaLyme posted some notes on LymenetEurope from his talk at a conference. YIKES!

[LymeEnigma]

I'm going to have to check out those notes ... you've got me curious now.

I think what's most important, regarding this very difficult subject, is we remember that a label only goes so far ... and sometimes labels just add to the confusion. I don't think we should be protecting someone specifically because s/he is known to be Lyme literate, just like we shouldn't discount someone immediately because s/he is an ID doc. We might have good reason to group these individuals in different way, view them with preconceived ideas, given what we've been through, but there are good and bad exceptions to every rule ... and I think sometimes our community in whole has become so jaded that we are unable to see that.