-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Read the last couple slides from 2010. That'll put a bee in your bonnet. That guy is an obvious ignoramus.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Camp Other
Unregistered
posted
Here we go again...
This is Steere's OWN SLIDES and I am reading them, point by point... WTF?
Oh GOODY.
Slide 3: The Incidence of Co-Infections in 100 patients totals higher than number of both Anaplasma and Babesia columns together. Where are the missing coinfections for the remaining patients studied? Also, this data is from 2001 at the latest - epidemiological studies from the past 10 years, patient surveys, and research in multiple countries have proven the rate of coinfection is increasing and projected to continue.
Slide 4: Reading bullet #1, research I've read points out that Anaplasmosis and Babesiosis usually do come along with Lyme infection at the same time, and make flu-like symptoms more intense. Bullet #3 gets it right. Bullet #4 he should expound upon - there are right and wrong ways to accurately do Babesia tests. You need *successive smears* over time. Bullet #5 Not always - well, this isn't the full story, that is. They can be subclinical infections and they can take months to incubate. Combine that with Lyme and possible immune system dysregulation, and weird (bad) things happen.
Slide 5: Seronegative Lyme exists and must be taken into account. Volkman and others know this. I don't even want to get into how Steere is describing serologic progression and missing prolonged IgM response.
Slide 6: So STEERE... If you and your cronies are going to insist on saying "Chronic Lyme isn't real" or more precisely, "Lyme Disease can't persist", why on *earth* do you put "Stage 3 - Persistent infection " on your slide, under "Clinical Manifestations of Lyme Disease? You have some explaining to do, young man.
Slide 7: This is a horrible chart. I'll skip to Slide 8.
Slide 8: Still a horrible chart. Which of these tests do primary care physicians routinely use in their practices? At any rate, I don't consider these tests good enough for catching early infection - either the ELISA or the WB. I'm kinda surprised at the NB test reports, though - can you show us those assays? And how do you *clinically define* those with "Post-Lyme" compared to those with "Late infection"?
Slide 9: *This* is your assay? I understand what you're doing, but show me the breakdown of individual patient data, too.
Slide 10: Bullet #1 you need to do more research on this antibody response... and look at what else is out there. Bullet #2 *sigh* Can we just stop focusing so much on the EM rash? I see you've used it as a diagnostic indicator but it is not reliable. Have you talked to Luft about infections where there is a rash but no real constitutional symptoms? That some forms of Bb are more virulent than others? That some have no rash but are highly virulent? No? Bullet #3 This is just the tip of the iceberg...
Slide 11: Ho hum... Hey, if you're going to go back to 1998, why not go back to your own data about persistence?
Slide 12: Bullet #1 Well, this IS a big issue. RST1 strains do have evidence of being more virulent. Maybe you *weren't* ignoring my comments about Luft in slide 10? How about trying this one: More virulent strains settle in harder to reach places sooner and earlier... Let's give that patient 200 mg daily of Doxy and see how penetrative that is to the CNS...
Slide 13: No sh*t, Sherlock? I'm not doing this for a living and yet I knew this.
Slide 14: Except in the case of RST1 early NB... and/or coinfections... Yessiree...
Slide 15: Seriously, you have to start this earlier and start treating the coinfections, too. Where are the long-term studies of people treated for NB - can someone please cite them for me, because I don't want to say the wrong thing about this slide? Thank you.
Slide 16: Oooh! I'm a member of the Counterculture! Where's my tie dye and love beads, baaabbyyy?
Here we go...
Bullet #1 All pain IS subjective, unless you want to shove me in an fMRI and infer that I am, in fact, experiencing pain. Also: Without positive serology and culture, how DO you infer that one has potential problems with an infection that affects their brain? Maybe the infection *isn't* in the brain but there is Lyme encephalitis and CNS involvement without an actual *brain* infection.
Bullet #2 You just posted your *own chart* - Seems to me there was a high rate of failure in tests around early diagnosis. Did I misread your chart? Feel free to explain it to me.
Bullet #3 Why are you labeling this a counterculture ideology? If a coinfection goes undiagnosed and untreated, the person has been living with it. That is chronic, unless you have a different definition. It may be subclinical or incubating and be more pronounced later. If you do *not* think this is possible, explain to the audience why. I'm listening. Go ahead...
Bullet #4 Actually, I think what's difficult to treat is what isn't picked up through testing in the first place, and having doctors miss it early on. And coinfections do confound the diagnostic picture, as well as immune dysregulation issues. Your explanation is overly simplified and dumbed down. Try again, sir, and explain *why* you think this is incorrect.
Bullet #5 Actually, Steere, the issue isn't that. Patients know they have more than one possibility to treat their symptoms - it's just if there is evidence based on research out there that the bacteria *can* persist and they have not only positive test results but history of a tick bite and symptoms to match Lyme disease, in their view, Occam's Razor applies.
When I have a sinus infection for two weeks and it's still there, my primary care doctor gives me a different antibiotic for the next course - s/he doesn't stop them. It makes sense I'm still infected to my doctor. Explain how this differs. Go ahead. I'm cool with it; I'll listen.
People are going to at least try an antibiotic challenge to see if it helps whether the IDSA supports this view or not - especially if they are suffering; especially if there is any thought that there is an infection present and steroids would be contraindicated. (Besides, steroids are their own nasty piece of work, admit it - people gain weight, have awful mood swings and insomnia, and it affects their immune system. Not much better than some antibiotic side effects, no?)
You also have to consider that a number of them may have already tried a long list of other treatments prescribed to them and they did not help.
I'd like you to ask a question: If these folks have garden variety RA, and those patients can take antibiotics to treat theirs - why can't Lyme patients take antibiotics to treat their Lyme arthritis?
Slide #17: Bullet #1 Yes, you have that right. Patients *do* have severe impairments in health-related quality of life. DON'T FORGET THIS.
Bullet #2 Look at studies on the reliability of using CSF and PCR to find evidence of Borrelial infection. You will find that even though samples were taken of blood and CSF that this is not the most reliable way to find Borrelia. You need tissue from the right locations.
Bullet #3 So what?
Bullet #4 Again, so what? The Klempner trial is now over a decade old and had only 129 people in it. Also, testing antibiotic treatments for persistent symptoms does not equal testing for the presence of Borrelia. Remember Koch's postulates. Keep in mind, though, that xenodiagnosis is a tricky business... and may be trickier in those immunosuppressed and with coinfections. (This is my guess, looking at animal studies with different vectors and tickborne infections... I honestly can't say what will happen in humans with different diseases and their genotypes.)
Slide 18: Bullet #1 He said this? Really? Wow, you are really amazingly sexist and presumptuous, Steere. I am amazed at your audacity. What about the men who have Lyme and seek assistance? What about people who are skeptics and question ALL authority figures - including the IDSA *and* LLMDs *and* pseudoscientist peddlers of snake oil *and* *and*... Well???
Bullet #2 And then there are people like me, who are *not* gullible, who got bit by tick, and were attending a friend's wedding when they suddenly became *incredibly severely ill* and there was no one telling them anything about what was happening at the time, one way or another. All I knew is that I was seriously ill and could not move without enormous pain. Do you *really* think all of us are *that* gullible? I have news for you... I'm not this small minority...
Bullet #3 Short-sighted answer. A direct scientific correlation-causation if I may: If someone has malaria and you treat it, then they get symptoms again, you treat it. The condition relapses and requires antimalarials, not palliative treatment - although any additional treatment which provides the patient more comfort is welcomed.
Slide 19: Yes, I know all these bullet points and I still think that data was ignored and patients' needs were ignored. Your attitude towards patients on slide 19 only serves to fuel the flames. Is that what you want? Or do you want to try to give better explanations to support your presentation and your position? FAIL.
Slide 20: Bullet #1 How nice of you to make a statement without stating why the evidence that *is* out there is *not* convincing. Arguing with you, Steere, is like arguing with Clovis firsters at an archaeological convention!
Bullet#2 Just because someone has "medically unexplained symptoms" doesn't mean that they don't have an infection of some sort - or an underlying condition that leaves them more susceptible to them. Next...
Bullet #3 If you don't believe in Chronic Lyme disease and think it is a misnomer, then why the h have you, your IDSA cronies, and the NIH used this term to describe persistent infection? And why do you have a definition for CLD on the IDSA web site which overlaps with actual disease states such as late objective manifestations of Lyme disease and MS. It is you, sir, who is perpetuating your own "misnomer" because you used the term before many other people did. Please explain.
Okay, I've had enough of this. Bored now.
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posted
Camp Other... loved it. It's funny that half of us are somewhat brain impaired and yet we're way ahead of him in brain power.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Camp Other
Unregistered
posted
If I were going to be uncharitable, I'd charge him with posting fake slides to goad the patient community while he shares the real slides with others...
I have a hard time getting past the lack of professionalism of slide 18, even if all else was 100% true. I allow for gray areas and fudging. I'm not without flexibility. But seriously? This doesn't reflect the state of the science or new research - even from an autoimmune angle - if he was going to go there. This is more about what he is against rather than what he supports; what he is for.
I wish he'd at least say something new.
This? This is just a few minutes worth of entertainment.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Not able to read what is posted but from the time I was first dx, I keep hoping this guy will just fade into the background and others will be heard that actually help those with lyme
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
this guys a joke, an a$$hat. if i saw him walking across the street i wouldnt watse my time to run up to him and give him the finger.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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Camp Other
Unregistered
posted
Does anyone actually know where that term, "a$$hat" came from? Someone asked me recently and I realized my friends have been using it for a few years - but none of us know.
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