Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 I watched a video (~20 minutes long) of Fallon that I downloaded here: http://www.lymediseaseassociation.org/Videos_Time.html I watched this a couple of weeks ago and don't have time to refresh my memory on it but I believe he described two or three patients that were significantly helped by Rocephin only to relapse. In the cases he presented,however, I think it took months, and in one case, a couple of years before the patient relapsed (again, If my memory is working). So I just want to clarify: he's not now saying that all his Lyme patients relapse rapidly following cessation of Rocephin, is he? It's interesting that Dr. Fallon has embraced the lactam/glutamate connection. In his video he includes sensitivity to sound and light (which I have) as part of the Lyme diagnosis. I posted this citation: http://tinyurl.com/cwkt3 PMID: 15527505 several months ago. It says, " ...the patient with mental fatigue often suffers from loudness and light sensitivity.... " . That is, this paper attempts to link sound/light sensitivity to glutamate toxicity. By the way, anybody here who is not up to speed on the role of glutamate toxicity, this last paper I cited gives a good overview and can be downloaded free of charge. Matt <jenbooks13@h...> wrote: > > Yes, Fallon seems to think (in conversation/interview) that > patients may relapse so rapidly off rocephin because of the glutamate > issue. The bugs don't multiply fast enough for those sudden relapses. > Maybe it was downregulating glutamate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 Please don't misinterpret me. I believe he was citing a recent Nature paper. It looks like antibiotics, many of them, have other effects than killing bacteria. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 > Please don't misinterpret me. I didn't misinterpret you, so there's no need to exhort me to be more careful in my interpretations. I asked for clarification in order to avoid misinterpretation. You said, " Yes, Fallon seems to think (in conversation/interview) that patients may relapse so rapidly off rocephin because of the glutamate issue. The bugs don't multiply fast enough for those sudden relapses. Maybe it was downregulating glutamate. " I was not privy to the conversations you had with Dr. Fallon, so I asked, and am asking, for clarification. Two interpretations are possible: First, some patients may relapse rapidly, and in those cases glutamate transport is inferred to be altered. Second, Dr. Fallon's patients usually relapse rapidly following the discontinuation of Rocephin, and this may be due to altered glutamate transport. That is, what is the " may " in your quote referring to? A particular patient " may " relapse rapidly? Or, most patients relapse rapidly, and this " may " be due to altered glutamate transport? >I believe he was citing a recent Nature paper. That is the only paper he could cite. It is the only paper to date that reports data on the ability of lactam antibiotics to alter glutamate transport. It is the paper I cited further up in this thread (and a month or two ago, as well), so I'm not sure why you're citing it here, and in the context in which you are citing it. >It looks like antibiotics, many of them, have other effects than killing bacteria. The non-antibiotic effects of antibiotics have been the topic of a lot of discussion here, and I have been contributing to that discussion as much as anyone. Along that vein, I was interested to discover recently that HBOT may partly disarm Th1 effector responses: http://tinyurl.com/7lmlt PMID: 12670123 If memory serves, you have used a lot of mild hyperbaric treatments. Do you think it is possible that some people may be infected with pathogens that are not susceptible to HBOT, but nonetheless feel better as the Th1 response is compromised? And could this effect diminish a patient's defense against such a pathogen leading to the relatively unchecked spread of that pathogen? Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 Geez. I really don't have the energy to be called to task and asked to reproduce an entire conversation and besides I can't do that. Please refer to the Nature paper. I have nothing to clarify. It was mentioned in passing that's all. I don't read every post or discussion on here so I am mentioning the Nature paper because that's what I recall from the conversation. Please don't assume I follow everything on I & I religiously because I don't or get insulted because that was the paper he was referring to and I don't know that you have investigated that paper yourself. Please cut others a break. Or at least me. I don't understand your ? about hyperbaric but I have no idea how many pathogens it suppresses. I just know I've been without my chamber for a month now and I feel like shit. > > > Please don't misinterpret me. > > I didn't misinterpret you, so there's no need to exhort me to be > more careful in my interpretations. I asked for clarification in > order to avoid misinterpretation. > > You said, > > " Yes, Fallon seems to think (in conversation/interview) that > patients may relapse so rapidly off rocephin because of the > glutamate issue. The bugs don't multiply fast enough for those > sudden relapses. Maybe it was downregulating glutamate. " > > I was not privy to the conversations you had with Dr. Fallon, so I > asked, and am asking, for clarification. Two interpretations are > possible: > > First, some patients may relapse rapidly, and in those cases > glutamate transport is inferred to be altered. > > Second, Dr. Fallon's patients usually relapse rapidly following > the discontinuation of Rocephin, and this may be due to altered > glutamate transport. > > That is, what is the " may " in your quote referring to? A particular > patient " may " relapse rapidly? Or, most patients relapse rapidly, > and this " may " be due to altered glutamate transport? > > > >I believe he was citing a recent Nature paper. > > > That is the only paper he could cite. It is the only paper to date > that reports data on the ability of lactam antibiotics to alter > glutamate transport. It is the paper I cited further up in this > thread (and a month or two ago, as well), so I'm not sure why > you're citing it here, and in the context in which you are citing it. > > > >It looks like antibiotics, many of them, have other effects than > killing bacteria. > > The non-antibiotic effects of antibiotics have been the topic of a > lot of discussion here, and I have been contributing to that > discussion as much as anyone. Along that vein, I was interested > to discover recently that HBOT may partly disarm Th1 effector > responses: > > http://tinyurl.com/7lmlt > > PMID: 12670123 > > If memory serves, you have used a lot of mild hyperbaric > treatments. Do you think it is possible that some people may be > infected with pathogens that are not susceptible to HBOT, but > nonetheless feel better as the Th1 response is compromised? > And could this effect diminish a patient's defense against such a > pathogen leading to the relatively unchecked spread of that > pathogen? > > > Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 > Geez. I really don't have the energy to be called to task and asked > to reproduce an entire conversation and besides I can't do that. I asked you to clarify the meaning of that portion of the conversation which you paraphrased to us. You referred to the rapidity with which Dr. Fallon's patients relapse following the discontinuation of Rocephin. You said, " Fallon seems to think (in conversation/interview) that patients may relapse so rapidly off rocephin because.... " So I asked you, " So I just want to clarify: he's not now saying that all his Lyme patients relapse rapidly following cessation of Rocephin, is he? " Since you are the one who talked to him about the rapidity with which his patients relapse following the discontinuation of Rocephin, I am asking you if he gave you some idea about the incidence of this problem. Do most of his patients relapse rapidly, or is this relatively uncommon? > Please refer to the Nature paper. I have nothing to clarify. The Nature paper did not report on how Dr. Fallon's patients respond to Rocephin. You did. That is why I asked you to clarify what you meant. It took only a couple of months for the NEJM to use the Nature paper to take a shot at Lyme activism (see my post #1328). The NEJM article states that the benefits that are seen with the use of Rocephin are being used by some people as evidence that certain patients indeed have Lyme. But the NEJM article uses that Nature paper to undermine that argument. Now you are reporting that Dr. Fallon has patients that relapse rapidly off Rocephin; too rapidly to be accounted for by a rebound in bacterial population. You appear then, by way of Dr. Fallon, to be lending weight to the NEJM's position. That's OK. But the next question is: how much credibility will Lyme patients lose if they do not address this issue proactively? A good fall-back position is for patients/LLMDs to say that, in accordance with the Nature paper and the criticism of Lyme activism that appears in the NEJM article, Rocephin may indeed be palliative by way of glutamate transport, but at least this demonstrates glutamate toxicity in patients that had been otherwise shunned by the medical community. That is, those in the medical establishment who shun sick people can not use the Nature paper to undermine the LLMDs that these patients turn to with out simultaneously acknowledging the glutamate toxicity occuring within the patients they (the conventional doctors) have abandoned. Lyme activists need to use the Nature paper to their own advantages, and not have it used against them. But that can't happen until we get clear on the extent to which Rocephin is palliative vs. curative. Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Dammit my hands got sloppy and I just lost my reply. Look. There are games within games here. Fallon wants the NIH to believe that it's unstated agenda can be advanced by his research. The NIH wants Fallon to believe that his unstated agenda can be advanced by accepting their funds and the strings attached. What either side actually means in a relationship this complex is very hard to say. The bottom line is that Fallon has been singularly focused on non- responders, and his comments probably have to be interpreted in that context not as broad comments about how Lyme patients generally respond to treatment. We can say a few things with some degree of certainty: 1) Fallon believes Lyme disease is a real and potentially devestating illness - the body of his published work makes that ver clear. 2) Fallon is aware, just as I am aware and have tried to make this list aware, that in real life Lyme treatment is in all but a very few cases BOTH delayed in a way that even Alan Steere admits torpedoes the prognosis and truncated in a way that the clinical experience of ILADS doctors tells us ALWAYS results in treatment failure. 3) The NIH has never acknowledged point 2, and very likely never will, because it is an executive agency accountable to a team in the White House who are largely funded by insurance and pharma conglomerates, and over the longer term because it's public utterances are carefully managed so as not to offend key interest groups (Lyme patients aren't one of those groups - yet). Here is my personal take on the beta lactam-glutamate findings, and how they relate to the broader questions of how Lyme is or is not recognized and treated as the serious illness it truly is: A) This disease, left untreated, does SERIOUS potentially PERMANENT damage to various body systems, and especially the central and peripheral nervous systems, where impaired glutamate transport facilitates the death of oligodendrocytes and the 'white matter' that grows out of them. In other words, the fact that Lyme 'non- responders' do in fact respond powerfully when glutamate transport is enhanced is EVIDENCE OF HOW VERY ILL THESE PATIENTS ARE, not the opposite. Lyme patients themselves have an interest in minimizing the the extent of this damage - we are all constantly exhorted by our peers to maintain a positive attitude and admitting that long-term, potentially irreversible nervous system damage is a possible outcome is not consistent with " positive thinking. " C) This means that certain data has a double-orphan status. The team that wants to suppress the Lyme epidemic rather than proactively respond wants nothing to do with acknowledging the potentially crippling nature of the disease. Lyme patients themselves may want nothing to do with admitting the possibility of irreversible damage into their calculations (though some of us are well beyond that and frankly have no choice). D) If you did a trial of healthy subject on Rocephin, would their mental function improve dramatically? Would they suddenly be able to tolerate levels of sound and light and motion that are ordinarily beyond bearing? I tend to doubt it. Nor would they revert to a near- autistic state of selective retardation when the treatment was withdrawn. Get real, folks. This disease is serious. What it does to the brain and nerves is serious. The fact that Rocephin can provide even temporary relief to these patients is good news, and should inspire research on more sustainable means of accomplishing the same changes in glutamate transport. I think we might learn more about these findings from reading Rich's posts than we do from hearing about Fallon's private comments. E) What distinguishes the Lyme Wars from legitimate scientific debates is that in this conflict only one side speaks as if the well- being of Lyme patients matters at all, while the other consistently is concerned with broad impacts on how medical research and treatment dollars are allocated. F) An honest concern with the well-being of Lyme patients must include probing the difficult questions of sustained, long-term, difficult-to-reverse damage inflicted when the disease is left untreated long after symptoms appear, which it is, we have reason to believe, in the overwhelming majority of cases. > > > Geez. I really don't have the energy to be called to task and > asked > > to reproduce an entire conversation and besides I can't do that. > > > I asked you to clarify the meaning of that portion of the > conversation which you paraphrased to us. You referred to the > rapidity with which Dr. Fallon's patients relapse following the > discontinuation of Rocephin. > > You said, > > " Fallon seems to think (in conversation/interview) that > patients may relapse so rapidly off rocephin because.... " > > So I asked you, > > " So I just want to clarify: he's not now saying that all his Lyme > patients relapse rapidly following cessation of Rocephin, is he? " > > Since you are the one who talked to him about the rapidity with > which his patients relapse following the discontinuation of > Rocephin, I am asking you if he gave you some idea about the > incidence of this problem. Do most of his patients relapse > rapidly, or is this relatively uncommon? > > > > Please refer to the Nature paper. I have nothing to clarify. > > > The Nature paper did not report on how Dr. Fallon's patients > respond to Rocephin. You did. That is why I asked you to clarify > what you meant. > > It took only a couple of months for the NEJM to use the Nature > paper to take a shot at Lyme activism (see my post #1328). The > NEJM article states that the benefits that are seen with the use of > Rocephin are being used by some people as evidence that > certain patients indeed have Lyme. But the NEJM article uses > that Nature paper to undermine that argument. Now you are > reporting that Dr. Fallon has patients that relapse rapidly off > Rocephin; too rapidly to be accounted for by a rebound in > bacterial population. > > You appear then, by way of Dr. Fallon, to be lending weight to the > NEJM's position. > > That's OK. But the next question is: how much credibility will > Lyme patients lose if they do not address this issue proactively? > A good fall-back position is for patients/LLMDs to say that, in > accordance with the Nature paper and the criticism of Lyme > activism that appears in the NEJM article, Rocephin may indeed > be palliative by way of glutamate transport, but at least this > demonstrates glutamate toxicity in patients that had been > otherwise shunned by the medical community. That is, those in > the medical establishment who shun sick people can not use > the Nature paper to undermine the LLMDs that these patients > turn to with out simultaneously acknowledging the glutamate > toxicity occuring within the patients they (the conventional > doctors) have abandoned. > > Lyme activists need to use the Nature paper to their own > advantages, and not have it used against them. But that can't > happen until we get clear on the extent to which Rocephin is > palliative vs. curative. > > Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 That was a brilliant piece of analysis, Agent Scha! - Kate On Tuesday, June 21, 2005, at 04:20 PM, Schaafsma wrote: > Look. There are games within games here. etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 Yeah that was a cogent analysis and I recommend adding that post to the file section. I would just add for your consideration that I believe that any doctor involved in lyme research, or becoming an LLMD, has personally experienced its devastation, either themselves or in their families. Some of them are chronic--longterm--. I have no proof but I think we should assume that and give them the absolute benefit of the doubt. I think Amy Yasko would understand lyme. I'm still watching those DVDs. The things that make kids autistic, level of glutamate-- excitotoxin--is one. Allelic variations in certain genes, in methylation, in detoxification (15% of the population do not detox heavy metals well), underlying infections etc. The whole picture she has, would work in lyme--except that " lyme " is a bunch of nasty bugs thrown into one tick, and one particularly nasty spirochete, and spirochetes are unusual. I would like her to know and understand that bug. She gives the analogy, simple but nice, of Princess Di. If the chauffer weren't drunk, if the car was not speeding, if the paparazzi were not chasing, if they were not in the middle of the tunnel, if she had her seatbelt on...if you take just ONE thing out of the equation, she does not die. With each of us that's probably true, too, int erms of getting sick. But then I wonder, once you ARE sick, you probably have to unpack a # of those things, not just lift off one, to get well. The only thing I'd say is never underestimate the ability of the body to regnerate. Don't assume permanent damage. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.