"Treatment of the Early Manifestations of Lyme Disease"

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
TicksSuck
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Re: "Treatment of the Early Manifestations of Lyme Disease"

Post by TicksSuck » Fri 21 Nov 2014 21:18

Outcomes measured. The primary outcome was treatment failure. Treatment failure was considered to have occurred if a patient developed (1) persistent erythema migrans, defined as persistence of the erythema migrans lesion(s) despite antibiotic therapy resulting in additional medical evaluation; or (2) objective clinical and laboratory findings of progressive Lyme disease not present on initial diagnosis and not explained by an alternative diagnosis after antibiotic therapy for early Lyme disease.

duncan
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Re: "Treatment of the Early Manifestations of Lyme Disease"

Post by duncan » Sun 23 Nov 2014 20:15

A much delinquent thank you, TicksSuck, for this post.

It never ceases to amaze me that so much emphasis is placed on the EM. To me, it's just another red herring. As both a symptom and RELIABLE diagnostic tool, it is virtually meaningless. This whole thing about treatment failure being tied into persistent EM - WHY? It doesn't bother the sick, generally speaking. It's just that these pioneering boys could SEE it, just as they could SEE swollen knees, so they attached a significance that imo was misplaced, and acted as a distraction to more meaningful, disabling and sustained symptoms. Seeing wasn't just believing for these guys, it involved an inability to deny patient reports - as it still does.

As to the second qualifier noted as signifying treatment failure: a)What does that even mean?, and b) If only they subscribed to that today - because they more often as not, do not. Instead, most objective lab findings post treatment are written off as immune echoes, meaningless as supportive of unresolved infections, or infections refractory to treatment.

In other words, the game is rigged.

duncan
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Re: "Treatment of the Early Manifestations of Lyme Disease"

Post by duncan » Sun 12 Apr 2015 14:45

Bump.

Despite Henry's warning that I would be disappointed, I purchased a copy of this July 1983 Steere et al study that appeared in The Annals of Internal Medicine.

I have to say not only was I far from disappointed, but I have to agree with Pamela Weintraub's assessment that this was possibly a seminal piece.

When my brain is functioning a bit clearer, I will try to address what the study had to say.

duncan
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Re: "Treatment of the Early Manifestations of Lyme Disease"

Post by duncan » Tue 14 Apr 2015 12:16

About a quarter of the way into her book "Cure Unknown", Pamela Weintraub dedicates a few pages to discussing a July. 1983 study which appeared in the Annals of Internal Medicine, pgs 22-26. Entitled "Treatment of the Early Manifestations of Lyme Disease", it was authored by Allen C. Steere M.D., Gordon J. Hutchinson M.D., Danial W. Rahn M.D., Leonard H. Sigal M.D., Josef F. Craft M.D., Ellsa T. DeSanna, B.A., and Stephen E. Malawista M.D.

The study is behind a paywall, so I am unclear about my rights to reproduce it in its entirety here. So, instead, I will offer up a synopsis, and my interpretation, and provide quotes where appropriate.

From 1980 into 1982, in an effort to evaluate different antibiotic therapies, patients with Erythema Migrans were treated with penicillin, erythromycin, or tetracycline. Dosages for each were set at 250 mg, four times a day. I believe that's five times current recommended dosages for doxy. The authors demonstrated that tetracycline appeared to be the most efficacious.

One of the salient goals of this study was to evaluate each therapy in its ability to prevent later manifestations of Lyme. It is in the pursuit of this goal that things get interesting.

It appears that in an effort to make this goal more manageable, the authors divided up patient late manifestations into two categories: Major late manifestations and Minor late manifestations.

Major late manifestations included three (3) symptoms/signs, i.e., meningoencephalitis, myocarditis, and recurrent arthitis.

Minor late manifestations were limited to five (5) symptoms/signs, i.e., facial palsy alone, brief arthritis, tachycardia, headaches, and joint pain without abnormal physical findings.

Here is where things start to get really interesting. So, it would seem in effect, that the entire symptom cluster of patients was reduced, for data management purposes, to eight symptoms. I am unclear as to the fate of other symptoms - other symptoms that off the top of my head might include:

Muscle pain,
Peripheral neuropathy,
Memory problems,
Diminished IQ,
Problems with judgement and reasoning,
Ocular issues,
Vertigo and dizziness,
Extreme fatigue,
Weakness,
Breathlessness,
Hearing loss,
Sight and hearing sensitivities,
etc.

In short, the lion's share of symptoms that today characterize Lyme disease for so many, certainly for me, were not included in not only 'major" late manifestations, they seemed to have been omitted from "minor" late manifestations as well.

So at roughly five times today's recommended dosages, these therapies did what? According to the authors, all three abx therapies were effective in preventing or reducing the Major late manifestations. Those receiving tetracycline fared the best: None of the patients receiving it developed any major late manifestations.

And this is how future study results concerning tetracyclines could be couched. That recommended dosages of them effectively prevented or cured major Lyme symptoms.

The problem is, that when looking at that list of "minor" late manifestations, the cure rates were not nearly as stellar. In fact, up to 50% of the patients in the study reported symptoms from the minor category post treatment. That's up to half had persistent symptoms - even after receiving dosages five times today's recommended level. Moreover, that doesn't even touch upon all the other symptoms the study did not include.

What does all this mean? Well, if you "undo" that contrived bifurcation, then the resultant calculus is simple: Up to half of all patients in this study remained symptomatic, i.e. sick, after treatment. But with this study in their pockets, it would be accurate, going forward, to state that there was a proven therapy to deal with major manifestations of Lyme.

How did the study deal with all those patients who claimed continued symptoms? Clearly, those complaints had already been relegated to "minor" status, despite the intensity of such symptoms. But it appears to me that the authors discounted to some degree the reports of these five symptoms because the study points out that upon physical exam, a majority of patients appeared normal. Moreover, when speaking to the pathogenesis of those persistent symptoms, the study notes: "Because patients were told about possible late manifestations, psychogenic factors, particularly in patients subject to suggestion, may account for the responses of some persons." (pg 26) The authors do go on to state that these continued symptoms may point to a continued spirochete presence, or that the symptoms could arise even without such presence, as in the case of a "retained antigen".

But the damage had been done. A dual blast: A study stating that certain abx therapies could virtually eliminate major Lyme manifestations, and a suggestion that at least some patients who continued to report symptoms after treatment, might be merely expressing psychosomatic or psychogenic tendencies.
Last edited by duncan on Tue 14 Apr 2015 17:23, edited 1 time in total.

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ChronicLyme19
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Re: "Treatment of the Early Manifestations of Lyme Disease"

Post by ChronicLyme19 » Tue 14 Apr 2015 16:07

duncan wrote:So at roughly five times today's recommended dosages, these therapies did what? According to the authors, all three abx therapies were effective in preventing or reducing the Major late manifestations. Those receiving tetracycline fared the best: None of the patients receiving it developed any major late manifestations.

And this is how future study results concerning tetracyclines could be couched. That recommended dosages of them effectively prevented or cured major Lyme symptoms.
Yeh, but for how long were the patients followed after the study? After the first awful herx from the 3 week course of doxycycline, it took ~1 year from my tick bite to develop the really nasty symptoms that were debilitating. Prior to that they were considered more "minor" like in the study.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

duncan
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Re: "Treatment of the Early Manifestations of Lyme Disease"

Post by duncan » Tue 14 Apr 2015 16:20

If I understand correctly, patient follow-ups were up to 30 months, depending on when a given patient had been introduced into the study, ie, patients were recruited during the summers of 1980 thru 1982, with the study ending in December 1982.

It is also interesting that the study attempted to qualify the degree of initial illness (as a predictor of late manifestations), and the way this was done was to count the number of symptoms - as opposed to rate the intensity of symptoms.

The thing is, regardless of what we might consider major symptoms - based upon their intensity and degree of debilitation - I'm pretty sure that would not be relevant. It's the three late manifestations the STUDY counts as such that are considered "major", and all others - or rather, the other five symptoms the study identifies, are considered minor, regardless of intensity or duration. As for symptoms not included in those eight - well, as far as this study is concerned, it seems to me they might as well not exist.

This distinction between major and minor - it really speaks to the great divide that confronts us to this day between much of the patient community, and the doctrine that pours out from a handful of the old guard. That distinction was determined by them, and imo reflects a Lyme world that they prefer, as opposed to the reality that patients must confront on a daily basis. My "minor" symptoms are major in their impact to me, and do not deserve to be called minor by someone who has never experienced them - or worse, labeled them as such, unilaterally, for expediency and convenience. This dichotomy between major and minor is a false one, and imo does not depict an accurate representation of the prototypical Lyme patient experience, either individually or in aggregate.

What it speaks to is that the three Major symptoms defined in this study, are those that were most often successfully treated. The minor ones were just as likely to report treatment failure. And that image, that Lyme could not be cured in too many people, needed to change, and this study did just that.

dlf
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Re: "Treatment of the Early Manifestations of Lyme Disease"

Post by dlf » Thu 16 Apr 2015 16:58

Duncan,

Since you purchased that study, did you have an opportunity to compare it with the one I posted on page two of this thread, "The Clinical Spectrum and Treatment of Lyme Disease", which followed the one you bought?
I would be curious to know if any other information was included in the prior study that was not mentioned in the one that followed it.

Specific information that would be interesting would be whether patients who were treated just based on the presence of an erythema migrans and no systemic symptoms could be separated out from those that had disseminated infections prior to treatment and whether the results of treatment efficacy could be evaluated separately for those two groups of patients.

As knowledge of Borrelia strains and their different propensities to disseminate would not have been considered a factor in the early treatment studies and some unknown percentage of those patients likely had infections with strains that don't tend to disseminate into blood, other tissues or CNS, that would have slanted the treatment efficacy results. Patients that had erythema migrans only presentations that would not have disseminated would have been "cured" with water or time alone, but their "cures" would have been included in the overall statistics for treatment efficacy. Could those patient results be isolated from the total to provide a more realistic figure for cure rates for patients in whom the infection would have disseminated?

duncan
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Re: "Treatment of the Early Manifestations of Lyme Disease"

Post by duncan » Thu 16 Apr 2015 17:37

dlf, I think the answer to your question of whether those with just an EM and no symptoms could be separated from the with symptoms systemic or otherwise is yes. But i'm having a devilish time trying to decipher how to do it.

Give me a day or two to try with a clearer head. Today is not a real good brain day. I'm having trouble comparing the different tables - and it aint rocket science - there are only three tables. :D But Im having problems with the numbers.

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