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» LymeNet Flash » Questions and Discussion » Medical Questions » Sin Comes Naturally to A Rheumatologist from Yale

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Author Topic: Sin Comes Naturally to A Rheumatologist from Yale
CaliforniaLyme
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I don't undertsand why he was treating
these people if they were not chronically, persistently infected...?? Can someone
explain it to me? I am serious-
***********************************************
1: J Infect Dis. 1999 Aug;180(2):377-83. Links

Successful treatment of Lyme encephalopathy with intravenous ceftriaxone.

Logigian EL, Kaplan RF, Steere AC.
Department of Neurology, University of Rochester Medical Center, Rochester, NY 14642, USA. [email protected]

The efficacy of intravenous ceftriaxone, 2 g per day for 30 days, was evaluated in a case series of 18 consecutive patients who met strict criteria for Lyme encephalopathy.


Months to years after classic manifestations of Lyme disease, the 18 patients presented with memory difficulty, minor depression, somnolence, or headache.


Sixteen (89%) had abnormal memory scores; 16 (89%) had cerebrospinal fluid (CSF) abnormalities, and all 7 patients tested had frontotemporal perfusion defects on single photon emission computed tomographic (SPECT) imaging.


Six months after treatment, memory scores in the 15 patients who completed the study according to protocol were significantly improved.

In the 10 patients who had follow-up CSF analyses, total protein levels were significantly lower.

In the 7 patients who had SPECT imaging, posttreatment perfusion was significantly better.

Twelve to 24 months after treatment, all 18 patients rated themselves as back to normal or improved.

We conclude that Lyme encephalopathy can be treated successfully with ceftriaxone.

PMID: 10395852

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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TerryK
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My understanding is that they don't say it does not exist, they say it is rare.

Terry

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webmeg
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I'm sorry but I'm not sure I understand your question. But I'm having a Lymie day today.

Seems like the study is saying they had 18 patients that were confirmed infected with Lyme years ago and still presented with symptoms such as headaches.

So to me they are saying these people were chronic since they were infected years ago and still had issues?

They then treated for 30 days IV and found that they improved and most stayed improved or were cured...

My layman's understanding anyway. [Smile]

~webmeg

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AliG
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Sarah,

Don't you know that was an accident? It was published by mistake. [Roll Eyes]

Would you believe it was before they realized that 1 month of IV ceftriaxone was more dangerous than brain damage?

Maybe it's the first DO no harm thing being taken to extreme? Better to let the entire population become a bunch of bungling idiots than to risk a PICC line infection because a nurse didn't wash her hands, don't ya know. [shake]

Seriously though, I do believe that IDSA does recommend IV ceftriaxone for neurological Lyme, it's just that it's only a month & your done. After that, any remaining or worsening symptoms are all in your head. [Eek!]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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ldfighter
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Not sure but I think patients were excluded from the study if they had prior treatment with IV ceftriaxone, so it's just one month IV total.

"back to normal or improved..." How exactly did they decide that the "improved" people shouldn't have another round to see if they'd improve even more?

This is the logic of the IDSA?!

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Greatcod
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The guy is lying -period. Fallon's recent work indicated that the cognative effect of even longer IV treatment resulted in an only temporary improvement-three month, I think- of measureable cogative function.
Steere has had an agenda other than patient health from day one..distorting the truth about Lyme for over 30 years.
If there is a Hell, he'll be put in its hottest spot.
"Somnolence"-- that's a good one. Next time I see a doctor, I'll tell them I'm somnolent a lot of the time.
And that, no, I've never had any pain.

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ldfighter
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But everyone in Fallon's study had relapsed after treatment with IV ceftriaxone before, possibly making it more likely that IV ceftriaxone would fail again (strain differences, coinfections,...)

No one in this study failed IV ceftriaxone before.

Still doesn't make the conclusion that '1 month is enough' valid.

[ 14. December 2007, 02:12 PM: Message edited by: ldfighter ]

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map1131
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Cod, I agree. But why? Why in the world would he state what he does? What could be his purpose for (no doubt about it IMO) distorting lyme disease and using the word "can". It leaves the ones that "can't" look like we need a shrink????

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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canbravelyme
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Which just goes to show that I was correct in asking that dolt of an Infectious Disease Specialist I initially saw for IV right off the bat, because I suspected that his playing around with orals would be the avenue to chronic disease for me. I would have more than likely been cleared up had he followed the Burrascano Guidelines.

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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Soleilpie
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I went to journal website to look at the article and when they selected their subjects, it states that they could not have been treated with IV Ceftriaxone previously, but it does NOT state that they couldn't have been treated with any other antibiotic. So, it's unclear if any of these 18 patients had ever been treated prior to the study.

If they had been previously treated and still had Lyme, then in 1999 Steere accepted the concept of chronic Lyme. But even if they hadn't been treated, we're talking about patients who had Lyme for up to 2 years. That wouldn't make them acute patients, but more like chronic. I think Steere had a different view back in the day.

Steere's data does differ from Fallon's though. I mean his study shows Ceftriaxone to be very successful in 30 days and sustained to at least 2 years. Whereas Fallon's shows there's improvement with Ceftriaxone but it's not sustained for cognitive issues, ...but is sustained for more severe symptoms. The limitations in both studies is the number of subjects studied and so Steere's data is probably his true data, but w/only 18 subjects, it's unrealistic to conclude that w/out a doubt only 30 days is needed.

I think Fallon's study depicts the reality of IV Cetriaxone and antibiotics in general. We all know that generally there's improvement while on abx and typically a relapse when abx is halted.

California, I think Steere's backpedaling. It's interesting how so many doctors are siding with him (IDSA) and yet chose to ignore research by some of these IDSA members that contradict what they're purporting now.

I didn't read the entire study, so I may be interpreting things incorrectly.

--------------------
The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back.
-Abigail van Buren (Pauline Esther Friedman) (1918-2002)

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Greatcod
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I went to that Journal's website, hoping I could find the entire article. I didn't, but I came up with a reference this gem of a study..no abstract--you have to a subscriber. You won't see the IDSA touting this study in the media.

Diagnosing Bloodstream Infection: How Many Cultures?
Summary and Comment Subscription required

As many as four sets of blood cultures may be needed to ensure that bloodstream infections in adults are detected.


By Daniel J. Diekema, MD, MS
December 5, 2007
Covering J Clin Microbiol 2007 Nov

Amazing, really. These idiots have been missing diagnoses for years...it would be great if someone who has a subscription could get the abstract or article to us.

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Robin123
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lol, CaliforniaLyme -- I saw that earlier post this morning too -- but the sins of EIS officers are far greater...
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Lymetoo
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quote:
Originally posted by Tracy9:
Dr. P has spent 140 hours creating a rebuttal to the Feder and IDSA people et al....has about 68 studies or so where they refute themselves.

Cool!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Aligondo Bruce
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quote:
Originally posted by Greatcod:
The guy is lying -period. Fallon's recent work indicated that the cognative effect of even longer IV treatment resulted in an only temporary improvement-three month, I think- of measureable cogative function.
Steere has had an agenda other than patient health from day one..distorting the truth about Lyme for over 30 years.
If there is a Hell, he'll be put in its hottest spot.
"Somnolence"-- that's a good one. Next time I see a doctor, I'll tell them I'm somnolent a lot of the time.
And that, no, I've never had any pain.

It might be that belatedly Steere etc. realized that newly evolving brain imaging techniques such as SPECT and PET threatened to expose their lies. It might be that they were concerned that their fake testing paradigm would be revealed to be a lie by the presence of vast numbers of people who had bad brains on spect/pet. They were supposed to be CFS or fibromyalgia patients. And this study might have been an attempt by steere etc. to take control of the issue.
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Soleilpie
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I was able to get the full study from the journal website. I'm not a paid subscriber, so all of you should be able to access it from this link.

Steere Ceftriaxone Study

--------------------
The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back.
-Abigail van Buren (Pauline Esther Friedman) (1918-2002)

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Truthfinder
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What struck me was that there were only 4 symtpoms listed for the patients studied:

"....the 18 patients presented with memory difficulty, minor depression, somnolence, or headache."

Now, how many chronic Lymies have ONLY these 4 symtpoms? Could that explain why the treatment worked?

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

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Aligondo Bruce
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somnolence can actually be a devastating symptom. It's one of the worst problems for me. What does it mean? usually, intermittent excessive sleepiness. or, sleepiness which comes on every few hours and which is irresistible. When combined with insomnia etc. it can be a real problem. Usually the person feels 'brain tired' and fatigued mentally all of the time and it wears them down and prevents them from exerting much energy in a positive direction.

However, I am wondering this, and that is that I have been experiencing an excellent response to levaquin which does not target lyme, but targets another suite of bacteria including 'BLO'. I'm wondering if some of steere's patients had 'BLO' infections. However, a 'BLO' infection won't respond to rocephin.

In any event, it's safe to assume that steere lied his *** off in this study. He has told many lies during his sordid career.

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Dave6002
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Daniel J. Cameron MD MPH:

Private Practice, Attending, Northern Westchester Hospital Center, Mount Kisco, New York, USA

These results indicate that treatment delay is strongly associated with treatment failure for patients with Lyme disease. The average 1.8 years treatment delay recorded here is consistent with previous reports of treatment delays spanning 6 weeks to 3 years 4?6. Two-thirds of the delays occurred even though patients conformed to the well-defined CDC case definition. An additional third presented with well-described clinical presentations of Lyme disease, including fatigue, memory and concentration problems, irritability and headaches 7.

The poor outcome after treatment delay supports the hypothesis that treatment delay is a major risk factor for developing chronic Lyme disease.

Delayed treatment was identified in 58% of the cases with treatment failure. Failure was more than twice as likely to occur with delayed treatment than with timely treatment P < 0.002. The association between treatment delay and chronic Lyme disease remains strong even after adjustment for age, sex, tick bite, erythema migrans and steroid use variables.

Two-thirds of our subjects received timely treatment. Their failure rate was only 24%. That is less than half the failure rate for patients with delayed treatment in our study 58%, and dramatically lower than the 63% failure rate for patients with delayed treatment in two clinical trials 10.

It is worth noting that in our study, the overall failure rate was closer to the 12% to 33% rate documented for patients with neurological Lyme disease 7,9. The lower failure of 24% in those who received timely treatment underscores the importance of immediate and accurate diagnosis.

To avoid recall bias, we counted doctor contact only if a clear diagnosis was made by the previous doctor. Patient delays were included only if a clear rash or characteristic symptom complex developed. Longer delays by patients with ill-defined, non-specific symptoms would likely only strengthen the association between treatment delay and treatment failure.

This study was retrospective because it is not ethically or legally possible to design a research project with patients who receive no treatment.

Finally, it must be noted that study was not intended to determine if a treatment failure resulted from persistent infection or immune mediation. Additional trials are needed to understand the mechanism for treatment failure.

In summary, clinicians must ensure that patients receive prompt treatment as delays cause unnecessary suffering and expense. Doctors in Lyme endemic regions should inform patients about the risks and symptoms of Lyme disease. There is a pressing need for doctor education programmes designed to help clinicians recognize and treat Lyme disease at onset.

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Dave6002
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Doxycycline versus ceftriaxone for the treatment of patients with chronic Lyme borreliosis
Author(s): Ogrinc K (Ogrinc, Katarina), Logar M (Logar, Mateja), Lotric-Furlan S (Lotric-Furlan, Stanka), Cerar D (Cerar, Dasa), Ruzic-Sabljic E (Ruzic-Sabljic, Eva), Strle F (Strle, Franc)
Source: WIENER KLINISCHE WOCHENSCHRIFT 118 (21-22): 696-701 NOV 2006

Abstract: Background: Therapeutic guidelines for treatment of late manifestations of Lyme borreliosis have not yet become well established. Patients with symptoms suggesting central nervous system involvement are often treated with courses of intravenous ceftriaxone. This is an expensive treatment approach with potentially severe side effects. We compared the efficacy, side effects and costs of doxycycline and ceftriaxone in the treatment of such patients.

Patients and methods: Adult patients qualified for the study if they had had nonspecific symptoms suggesting central nervous system involvement for more than six months (but without overt clinical signs of the involvement), had positive serum borrelial antibody titers and/or erythema migrans prior to the onset of symptoms, had not been previously treated with antibiotics and did not have pleocytosis in the cerebrospinal fluid. Patients were given either 100mg of oral doxycycline twice daily for 4 weeks (23 patients) or 2 g of intravenous ceftriaxone daily for 2 weeks followed by 100mg of doxycycline twice daily for another 2 weeks (23 patients). Clinical outcome was assessed during a 12-month follow-up period.

Results: Improvement in the frequency and/or the intensity of symptoms was reported by more than two-thirds of the 46 patients enroled in the study. The two treatment regimens were found to be correspondingly effective. Photosensitivity reactions and gastrointestinal symptoms were noted more often among patients receiving doxycycline than in those receiving ceftriaxone. Treatment with doxycycline proved to be much cheaper than with ceftriaxone.

Conclusions: In patients with previously untreated chronic Lyme borreliosis with symptoms suggesting central nervous system involvement but without overt clinical signs of it, and without pleocytosis in the cerebrospinal fluid, treatment with doxycycline is as effective as with ceftriaxone. Treatment with doxycycline is cheap and relatively safe, but gastrointestinal symptoms and photosensitivity reactions can be expected more often than with ceftriaxone.

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feelfit
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Please, what is a BLO infection
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Greatcod
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My comment on somnolence, which I think many people would understand as a little sleepy, and fatigue, which they take to mean a little tired,
are how Steeere describes a debilitating and incapacitating exhaustion that leaves people bedbound, housebound and in wheelchairs.
30 years into the epidemic, and mainstream medicne and the public still don't grasp the gravity of chronic Lyme.He has done a really good job covering it up.

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TerryK
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feelfit asked:
what is a BLO infection

Bartonella like organism

Terry

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Hides1
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I'd like some doctor to come along and contact those 18 patients and do a follow up study on them. Of course the 30 days may have helped or improved- but what happened 6 months later- a year later? 5 years later? Did Steer ever do follow up studies? Therefore how do they know 30 days was enough?
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sparkle7
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Doing a study on 18 people is not a very large study.

Someone people stated prior that more studies, research, & follow-up need to be done. I agree with this.

Better testing also need to be accomplished.

If people are diagnosed earlier & given proper treatment there would be alot less suffering.

I really don't know why this is such a big issue & why there is so much "foot dragging" when it comes to Lyme.

I have my suspicions that Lyme is a genetically modified organism that either escaped from a lab or was deliberately planted in the environment to make people ill.

This is why we are given such poor treatment & respect by the medical community in general.

The whole treatment & everything surrounding Lyme has been institutionalized (meaning decisions are being made at higher levels as to the treatment of this illness).

I still don't agree that giving people larger & larger doses of abx will get rid of Lyme but we can't really know unless there are some concise studies done.

You would think this would have been done (ie: studies & research) already since Lyme has been around for 30+ years now.

I've had Lyme for 10 years undiagnosed - I tried the oral abx for about 8 months.

I don't feel that taking larger does of abx (IV or otherwise) will help but I haven't ruled it out entirely.

I don't have insurance - so it's a non-issue whether it gets paid for by insurance or not.

I'm ready to try something different like the herbal protocol.

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Aligondo Bruce
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quote:
Originally posted by Greatcod:
My comment on somnolence, which I think many people would understand as a little sleepy, and fatigue, which they take to mean a little tired,
are how Steeere describes a debilitating and incapacitating exhaustion that leaves people bedbound, housebound and in wheelchairs.
30 years into the epidemic, and mainstream medicne and the public still don't grasp the gravity of chronic Lyme.He has done a really good job covering it up.


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Aligondo Bruce
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Yeah based on what I've experienced I would describe it using adjectives like 'major fatigue' or 'debilitating fatigue' or 'excessive somnolence'. even 'deadly fatigue' since at many junctures I have felt as if I were dying of exhaustion.

however 'somnolence' is a medical term and most doctors associate it with some form of pathology. none the less steere is very guilty of giving far less than adequate descriptions of the symptomology and psychiatric signs of CNS lyme. this might be his biggest crime IMO, since doctors and patients alike turn to his descriptions of the disease and often don't consider it because he simply chooses not to describe lyme encephalopathy as anything more than cognitive disturbance.

as an aside, what I have noticed, and I think fallon has written on this, is that as crappy as you feel, if you can force yourself to exercise intensely {ie get a runner's high} it will help alleviate the somnolence. the problem is most people don't feel like doing this. it's frustrating because normal people don't have to do things like this.

I've concluded that this symptom at least is somehow related to disruption in natural opiate pathways during lyme. there's also been published studies that demonstrate that intense exercise alters the TLR4 pathway in the immune system thus countering inflammatory processes etc. and I think this might be a part of the issue in lyme.

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Aligondo Bruce
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quote:
Originally posted by Hides1:
I'd like some doctor to come along and contact those 18 patients and do a follow up study on them. Of course the 30 days may have helped or improved- but what happened 6 months later- a year later? 5 years later? Did Steer ever do follow up studies? Therefore how do they know 30 days was enough?

I've never met a steere patient. I've never heard of ANYONE who participated in any of these studies. I have NEVER heard of anyone, in real life, saying 'I had a well -documented case of lyme encephalopathy which was ruining my life and I totally recovered. Thank you, Allen Steere. Thank you, ray dattwyler. Thank you, Eric Logigian.'

NEVER.

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Soleilpie
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Hmmm...good point Aligondo Bruce.

--------------------
The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back.
-Abigail van Buren (Pauline Esther Friedman) (1918-2002)

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Greatcod
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I know one Steere patient--she got to him ten years after getting bit...she has chronic Lyme arthritis, and as well the rest of the package--
weakness, fatigue and muscle pain.
A ruined life...according to Steere works, the only impact to her health would be that she couldn't play tennis anymore.

[ 16. December 2007, 07:33 PM: Message edited by: Greatcod ]

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