Discussion in 'Latest ME/CFS Research' started by slayadragon, Apr 11, 2013.
Totally agree w/ you NA Wright.
(Not always right ha ha)
Anyway he imported an N from a different study who ever heard of that.
And there's no evidence they didn't also have WDB since often mold is hidden (as somebody above said happened to her famil) and leaks are inevitable and modern houses are built to grow mold sad to say. Modern being at least since 1970 or so.
Also when I looked at those studies a while back I remember both sensitivity and specificity and they varied.
I simply cannot fathom how nasal antifungals (amphoterecin has been compounded by CAM docs for thirty years now, and I know others using nasal antifungals) would cure 80-90% of bedridden patients. I'll believe it when I see a real peer review study (not in an open access online journal with no real oversight).
But for those who are improved that's excellent. But generally, this makes no sense to me. New methods are always really effective...until other docs try them on patients, in other offices, and for a few years.
Grapevines grow grapes...and make nice songs...but that'sn ot medicine or science.
Who said they were curing 80-90% of 'bedridden' patients? Patients are improving to various degrees. If you aren't interested in this until other studies and doctors confirm that it is effective, then come back in about 10 years.
I didn't say I'm not interested, I'm skeptical, and grapevine reports of improvements are not sufficient. It seems like hype. I have a right to say that.
Given the history of treatment in this illness, I think it makes sense to get more clinicians involved iand see what they come up with regarding testing and treatment. Brewer's patients (and now others) show abnormalities and give every indication of responding (slowly) to treatment. Skepticism is a healthy but so is confirmation and clinical tracking. Incidentally Dr. Brewer himself was skeptical at the beginning. The reality that is occurring is difficult to just sweep under the rug. Also it is a joke to talk about science and this illness. Leave those kind of dismissive comments to Dr. Lipkin, who may or may not be able to crack this illness.
The 90% refers to Dr Grants study. I went to see her last Thursday. She is sincere, intelligent and determined. I certainly did not get the impression this is hype. Have you seen her ? Have you talked to her ? She hired a medical student to put the data together that we know about. She has much more she hasn't had time to pull together.
Her cohort is mold affected patients, not CFS patients, however, some of the mold patients have CFS. And I'm not certain (she didn't say) any of them were bedridden. And as the other poster said, they improved to varying degrees, depending on the symptom.
Skepticism is good ... as long as it doesn't paralyze you from moving forward and trying treatments that might benefit you.
They used this (n=55) as their reference value for the test validity, in that sense here would not be a need to repeat that in further studies, but in one of the subsequent studies, this same group (n=55) is desribed as 'heathy controls' which is a very different thing.
What bothers me most about the whole thing though is the lack of any control study over the long term use of amphotericin in ME/CFS. This isn't a benign substance and the potential for negative outcomes seems signignficant, it's not enough for the clinicians to say 'all is OK'. There's also the fact that Brewer and others seem to be presenting their treatment approaches as somehow novel - all this has been debated widely and research shows far more limited benefit than, for example, the 90% Grant is claiming: http://www.enttoday.org/details/art...ry_Debated_in_Amphotericin_B_Controversy.html
Brewer and colleagues set a level of mycotoxin that they considered clinically significant based on results from 55 non randomly selected subjects. There is no independant measure of clinical significance, so what does the test for mycotoxin actually mean ?
Does having between 17% and 98% more of a tiny amount of mycotoxin in urine or nasal swabs actually mean anything ? It's still a very tiny amount, only a fiftieth of the amount that the US government says is safe to be in food. So are these tests really showing up 'abnormalities' or just results that fit within the normal range that would be found in the US population without any health impacts ?
I don't think I would wreck the microbiome of my nasal, respiratory and gastric linings on such flimsy (if not down right contradictory) evidence.
You are comparing 2 different cohorts there. One is mold patients and the other is patients with CRS with unknown cause. Dr Grant doesn't claim 90% cure, she claims 94% improvement. And if you actually look at the data (which I have if anyone wants to see it), you'll see most of the improvement comes in the nasal and throat categories. It's not an outrageous claim.
I actually am skeptical those test results mean anything (I had 2.1 ppb vs 1.8 ppb normal) because the amounts are so par. I've considered the fact that these tests do get people to try therapies and in some cases, they actually work. For example, some who test positive for Lyme may actually have SIBO.
Does amph B actually wreck the flora ? I've not heard of that. Antifungals produce the best results in autism, some resulting in cure and I've not heard parents or doctors comment on the kids guts being wrecked.
And , to be fair, I don't know if any of us are treating based only on the ppb test results, but rather, mainly, because we have symptoms consistent with mold exposure.
Does Grant actually have a research cohort ? As far as I can tell she's simply reporting on a group of patients, they don't seem to have been subject to selection or categorisation; it's difficult to tell because there's no published study, just various conference presentations. I don't know whether the claim is outrageous or not but it certainly seems to be at odds with various studies quoted in the 2008 ENT Today article (as above - http://www.enttoday.org/details/art...ry_Debated_in_Amphotericin_B_Controversy.html )
Amphotericin is a broad spectrum fungicide -it will impact upon the human microbiome and long term use could be very problematic and maybe a particular issue for anyone who already suffers from IBS type symptoms. There doesn't appear to be any valid research that suggests antifungicides are helpful in Autism - but in any case that seem an awful long way from Brewer and Grant's respective treatment propositions. Maybe Amphotericin as a short term treatment for chronic rhinitis is a reasonable proposition, but I'm unclear how cycling fungal infection could be distinguished from cycling allergic rhinitis - at least without some comparitive research.
I don't know if she has a 'research cohort' or not - I'm not clear at what exactly that is. She is a practicing clinician and mold patients gravitate towards her. I read what you referenced above and again, it's a different cohort. I think it's unreasonable to compare the 2 groups. And when I say her claims aren't outrageous, it's because when you look at her data, 94% 'improved' and most of those improvements were in the nasal and ear area, some in the CFS category vs someone above (I can't remember who) said she claimed a 90% recovery from bedridden. The latter would be rather outrageous, the former is not. (I do have the data and offered it, but of course, no one bothered to ask for it)
I'm not clear on how amphotericin would impact the microbiome other than killing fungi that are susceptible to it. Are bacteria actually susceptible to it ? Will it actually change my bacterial flora ? I don't think so. You are making a sweeping generalization simply because it is an antimicrobial.
You refer to 'research' a lot and I appreciate it's importance. But we must also all be aware of the significant 'cost' of research and thus the inability of it to always be there to answer our questions. The Autism Research Institute requests parents to rate treatments and by far the most successful are DMPS and antifungals. That means something. I also have happened to listen to most of the DAN! conference talks in their entirely and Dr Syd Baker has also reported that antifungals by far, have resulted in the most improvement and some losing their diagnosis. Those 2 facts are meaningful but due to cost and time will not be available in a research format.
Bottom line here, is that Dr Grant reports most improve within 2-3 weeks and some within 1-3 months. To me, a short trial will tell me if this is something that may or may not be an issue for me, and then I can move on.
Let's not consider lack of formal research or studies a bad thing - it will happen due to time and cost - consider other sources of data.
I am under his care and using this protocol. I tested high for tricothecenes from RTL. Oddly my 1st test was negative, very low level of tricothecenes. We did a re-test after discussing all of my symptoms. For the 2nd test I had been doing some strong physical activity the day before and I took the sample in the afternoon not the morning as I had done with the 1st test.
I'm on a 5mg dose of Ampho. B at night. Chelating PX in the morning.
The "herx" thing is an interesting question to ask myself. I did experience some reactions (moody, headaches, dizzy, vision problems) which started one week into therapy and are now tapering off (going on my 4th week now). Although I suppose it could be a reaction to the medicine itself; whatever the case it's lessening.
I've been following this thread with great interest, as someone that has benefited significantly from dealing with mycotoxins.
The thing that I'm most interested in hearing is how people actually do with this treatment. It sounds like there will soon be large enough #'s of people trying this treatment for us to glean insight really soon, and I would personally rather not let doctors that create protocols monopolize the reporting of success rates on those protocols.
If you're trying this treatment, I'd like to ask that you share your experience on HealClick here: https://www.healclick.com/reviews/summary so we can see in aggregate how people are responding. You can also use our daily tracking system to track what symptoms are changing after you begin treatment.
I look forward to seeing what comes of this...Thanks everyone for the great discussion.
set on one sidetuote="globalpilot, post: 448625, member: 588"]
You refer to 'research' a lot and I appreciate it's importance. But we must also all be aware of the significant 'cost' of research and thus the inability of it to always be there to answer our questions. The Autism Research Institute requests parents to rate treatments and by far the most successful are DMPS and antifungals. That means something. I also have happened to listen to most of the DAN! conference talks in their entirely and Dr Syd Baker has also reported that antifungals by far, have resulted in the most improvement and some losing their diagnosis. Those 2 facts are meaningful but due to cost and time will not be available in a research format. [/quote]
I suppose I refer to research because this is a forum specifically about ME/CFS Research - and actually moving away from a research focus and also onto another illness (CRS) as has happened in this thread perhaps illustrates the difficulties that doing so makes for maintaining a cogent examination of the issues. It certainly is unhelpful if breaking down research claims is seen to somehow undermining individual patient choices, which is a particularly good reason to keep discussions focussed.
The choices that individuals make about treatment is a very different thing from asssessing the validity of research. The kind of popularity survey that ARI promotes is a very long way from scientific validity - but of course patients are free to individually choose what value to place on it.
On the point about Amphotericin and the human microbiome - although far less numerous than bacteria, fungi are an important part of the microbiome, knocking them out may not be without consequence. Additionally Amphotericin acts as a bactericide, given that IBS type symptoms are significant for many ME/CFs patients the effects on the gut flora of any treatment need to be considered. Of course any treatment is a matter of a balance of risks and benefits and if getting on top of a rhinitis problem involves a few weeks worsened IB symptoms, then the costs/benefits may work out to be in favour of treatment. But the issue needs to be considered, not set on one side because a clinician claims an exceptional level of success, particularly when the claim is in contrast to published research and there is no specific reference to ME/CFS.
My hunch: it'll turn out to help a very few people a lot, some people some or a little, and a lot of people not enough or not at all. Like most everything else out there. Meanwhile, while the hype is high, a few doctors will be very busy.
There is hype around every treatment I have run across. Then, it is pretty amazing to see what treatments actually do help a person a little or a lot. I'll take having a layer of burden addressed, so I am going to look into this because my symptoms and history fit this so closely. I can understand your healthy skepticism, boohealth, but some things are worth looking into for some of us.
David. B, Ifish and Global Pilot, I hope you see this post since I am not replying directly to a post each of you has made. I am curious about the use of binders, even if just charcoal to mop up dead mold spores, as I understand Brewer is using in some way. Are you all using charcoal or other binders and how much, how often?
Also curious about alternatives to Ampho B. I have mast cell activation issues and histamine intolerance. Ampho B is contraindicated for people with mast cell activation. I am not sure if this applies only to oral form or would also apply to topical application. Has anyone heard mention of voriconizole as an alternative?
I was pleased to hear Dr Grant mention mast cells in her radio presentation. She talked about the mast cells being triggered by fungal hyphae. Fungus is a known trigger for mast cells (as is lyme). I am curious if any of Brewer's or Grant's patients have developed mast cell activation from the biofilm infection.
I asked Brewer specifically about binders and he no longer recommends using them. His patient have used them in the past with no apparent effect. His thought process is this: By virtue of the fact a patient tests positive for mycotoxins shows the patient can detox. The urine sample has mycotoxins in it, therefore it is leaving the body. It is all about input and not output. Take care of input and the output will take care of itself. He mentioned patients with a known exposure many years ago. They are detoxing just fine but are still sick.
ASL is producing voriconizole. Brewer has used it with many patients but he does not feel it works as well. About 10% of his patients cannot tolerate Ampho B and he is looking for alternatives. Some antifungals have a short life when mixed in the atomizable solution so this has been a problem. Nystantin is now available but he has just started using it, so its efficacy in this setting is unknown. Brewer is more excited about micafungin. A patient of his had excellent results with IV micafungin. ASL is working right to formulate this medication in an atomizable form.
So right now you can try either voriconizole or nystantin. Eventually you should be able to try micafungin. Do not forget about Chelating PX. If the biofilm is not broken down the antifungal will have limited efficacy. I know others on this forum have mentioned the fact that Ampo B has been available for many years as a nasal wash so the use of it presently is not a significant event. However, our understanding of biofilms has advanced greatly in recent years and developing a method to break down the biofilm matrix is critical to treatment success.
I cannot comment about mast cell activation and histamine intolerance. I never discussed that with Brewer.
Incidentally, we have three family members on the protocol. We have all been able to tolerate the treatment just fine. We have all experience significant die off symptoms.
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