Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 I believe it . B ----- Original Message ----- From: " " <erikj@...> " bherk " <bherk@...> Sent: Thursday, February 01, 2001 12:58 AM Subject: Mycoplasma : I tested positive for mycoplasma Fermentans at Garth Nicolsons lab : (www.immed.org) I've been on Doxycycline almost a year now. Mold avoidance : and Doxycycline has made all the difference in the world. I used to have : sleep disorders and blinding headaches and other problems too numerous to : mention. I got rid of all of them. I have complete control over whether or : not I get a headache. Sometimes I don't adhere rigidly to my mold avoidance : procedure and suffer the consequence, but I know how to get rid of : headaches now. My brave girlfriend is working in a moldy office and suffers : greatly. I do my best to decontaminate and take care of her but it's hard to : watch someone you love in so much needless pain. We're in Carson City, just : a few miles south of Reno where the front page news story you sent us : occurred. We thought that would make others in that office take notice and : help our credibility but they don't believe it. The receptionist there told : me that she can't relate to my reactivity to mold because she isn't allergic : to anything. Meanwhile I'm noticing the dark circles under her eyes, red : hands, veins standing out and the fact that she is chronically ill, has been : diagnosed with FM and at the moment that I'm talking to her about mold, she : has to get some more aspirin because she has a blinding headache. Go : Figure! : I've been told that I'm the perfect case of CFS by both peterson and cheney. : They never could help me in any way. Garth Nicolson tells me I have : mycoplasma. I take ABX, I avoid mold, I kick ass! Believe it or nuts. : : : Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 ERIK: Great! You are very correct in your attitude and the adjustments you are making. Mycobacteria means Mykos (fungi) and Bacteria in the blood, and quite possibly there are several species at " opportunistic " stage at work in you. You are very fortunate that the doctor and the medicine you have been prescribed have worked for you. Plus your dietary plan is a great one. Hard to keep for most folks, very regimented, but will save you hopefully from severe health consequences later from fungi. I would be willing to bet, you are under age 30. Your coworkers have much to learn about this sometimes vicious environmental microorganic contaminate... Kingdom fungi. God Bless you and yours... keep up the great work. Doug Haney (Author: " Toxic Mold! Toxic Enemy! " ) (916) 972-7783 or Medcorp68@... >From: " bherk " <bherk@...> >Reply- > " Sick Buildings " < > >Subject: [] Fw: Mycoplasma >Date: Thu, 1 Feb 2001 04:43:42 -0500 > >I believe it . > >B > >----- Original Message ----- >From: " " <erikj@...> > " bherk " <bherk@...> >Sent: Thursday, February 01, 2001 12:58 AM >Subject: Mycoplasma > > >: I tested positive for mycoplasma Fermentans at Garth Nicolsons lab >: (www.immed.org) I've been on Doxycycline almost a year now. Mold >avoidance >: and Doxycycline has made all the difference in the world. I used to have >: sleep disorders and blinding headaches and other problems too numerous to >: mention. I got rid of all of them. I have complete control over whether >or >: not I get a headache. Sometimes I don't adhere rigidly to my mold >avoidance >: procedure and suffer the consequence, but I know how to get rid of >: headaches now. My brave girlfriend is working in a moldy office and >suffers >: greatly. I do my best to decontaminate and take care of her but it's hard >to >: watch someone you love in so much needless pain. We're in Carson City, >just >: a few miles south of Reno where the front page news story you sent us >: occurred. We thought that would make others in that office take notice >and >: help our credibility but they don't believe it. The receptionist there >told >: me that she can't relate to my reactivity to mold because she isn't >allergic >: to anything. Meanwhile I'm noticing the dark circles under her eyes, red >: hands, veins standing out and the fact that she is chronically ill, has >been >: diagnosed with FM and at the moment that I'm talking to her about mold, >she >: has to get some more aspirin because she has a blinding headache. Go >: Figure! >: I've been told that I'm the perfect case of CFS by both peterson and >cheney. >: They never could help me in any way. Garth Nicolson tells me I have >: mycoplasma. I take ABX, I avoid mold, I kick ass! Believe it or nuts. >: >: >: > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 Dear and Dear Doug Haney: cc: [sick buildings] list-serve It looks like you may have both been misinformed about some issues regarding Mycoplasma. I am writing as one of the relatively few persons who has actually done research on the epidemiology of Mycoplasma fermentans. (I am one of the early investigators to have linked certain Mycoplasma with certain issues in the HIV epidemic, and so you need to know that I DO consider Mycoplasma to be an important issue in that regard, and with respect to certain aspects of sexually transmitted infections as well. I am NOT one of those who dismiss Mycoplasma. I have been involved as an epidemiologist in this area since 1992.) a) Mycoplasma cross-react in some serologic studies. However, there can very easily be false positive results, for many reasons, and this in part depends on the specific assay used by the lab in testing. What specific assay(s) were used in "Garth Nicolsons lab" for your testing and what were the values? Elsewhere on that web site, I see "Mycoplasma species panel of four pathogenic mycoplasmas (M. fermentans, M. pneumoniae, M. hominis, M. penetrans) by PCR" as the only test apparently offered, and thus I suspect that may have been what was done If it were indeed PCR, there are issues of false positivity related to contamination (exceptionally easy to happen with this technique). (PCR by the way detects direct evidence of an organism. Serologic antibody assays would seek to detect an immunologic reaction to an organism.) I am not aware of any data showing any clinical relevance in your circumstance. Outside of a research study, I am not aware of any evidence to support ordering any of these tests. Antibodies to Mycoplasma fermentans are actually pretty common based on studies I have personally led, and it has NOT yet been shown to cause ANY clinical illness. I am NOT aware of any evidence to support routine "treatment" of this particular mycoplasma with antibiotics, much less long term antibiotics. Ask for documentation, not hearsay, with specific references to peer-reviewed research. And if there is indeed any that I am unaware of, I shall be pleased to receive a copy from you and to review it. c) At the web site link you give, one can get to http://www.immed.org/illness/infectous_disease_research.html The mycoplasma referred to on that web page is NOT Mycoplasma fermentans! Also, Mycobacteria are VERY different organisms from either Mycoplasma or fungi! d) You should be aware that antibiotic treatment can carry its own adverse sequelae...it is not necessarily a sign of good medical care to be placed on them, particularly long term. The good news is that you are feeling better. Stanley H. Weiss, MD For those interested in a thorough review of laboratory methodologies in general, and tests related to testing for retroviruses such as HIV in particular, you may wish to read the following book chapter. Weiss SH. Laboratory detection of human retroviral infection. [Chapter 8.] In: AIDS and Other Manifestations of HIV Infection, 3rd edition, editor P. Wormser, Published by Lippincott-Raven, Philadelphia, pp. 175-200, 1998. Those who are interested in Mycoplasma and HIV, may wish to see: a) Wang RY‑H, Shih JW‑K, Weiss SH, Grandinetti T, Pierce P, Lange M, Alter H, Wear D, Mayur R, Lo S‑C. Mycoplasma penetrans infection in male homosexuals with AIDS: high seroprevalence and association with Kaposi's sarcoma. Clinical Infectious Diseases 17:724-729, 1993. Wang RY‑H, Grandinetti T, Shih JW‑K, Weiss SH, Haley CL‑D, MM, Lo S‑C. Mycoplasma genitalium infection and host antibody immune response in patients infected by HIV, patients attending sexually transmitted diseases clinics and in healthy blood donors. FEMS Immunology and Medical Microbiology 19:237-245, 1997. c) G, Skurnick JH, Denny TN, s R, Kennedy CA, Regivick N, Nahmias A, Lee FK, Lo S-C, Wang RYH, Weiss SH, Louria DB. Herpes simplex type II and Mycoplasma genitalium as risk factors for heterosexual HIV transmission: report from the heterosexual HIV transmission study. International Journal of Infectious Disease 1(3):5-11, 1998. d) Lo S‑C, Wang R, Weiss SH, Grandinetti T, Alter H, Shih J. Mycoplasma penetrans infection associated with Kaposi's sarcoma in male homosexuals with AIDS. IXth International Conference on AIDS, Berlin, 1993, abstract # PO‑B02‑0923, volume I:289 e) Lo S‑C, Lange M, Wang R, Klein EB, Inada Y, Weiss SH, Shih J. Development of Kaposi's sarcoma is associated with serologic evidence of Mycoplasma penetrans infection: Retrospective analysis of a prospective cohort study of homosexual men. First National Conference on Human Retroviruses and Related Infections, Washington DC, December 12‑16, 1993. The following was the first epidemiological assessment of the test now used to routinely screen the blood supply for HIV: Weiss SH, Goedert JJ, Sarngadharan MG, et al. Screening test for HTLV-III (AIDS agent) antibodies: specificity, sensitivity and applications. Journal of the American Medical Association 253:221-225, 1985. I cite these in part to ensure that it is understood that I do indeed have long-term experience as an epidemiologist in assessing research assays, as well as bringing them forward into more routine use as warranted. ________________________________________________ ----- Original Message ----- From: " Haney" <Medcorp68@...> < > Sent: Thursday, February 01, 2001 1:56 PM Subject: Re: [] Fw: Mycoplasma > ERIK: Great! You are very correct in your attitude and the adjustments you > are making. Mycobacteria means Mykos (fungi) and Bacteria in the blood, and > quite possibly there are several species at "opportunistic" stage at work in > you. You are very fortunate that the doctor and the medicine you have been > prescribed have worked for you. Plus your dietary plan is a great one. > Hard to keep for most folks, very regimented, but will save you hopefully > from severe health consequences later from fungi. I would be willing to > bet, you are under age 30. Your coworkers have much to learn about this > sometimes vicious environmental microorganic contaminate... Kingdom fungi. > God Bless you and yours... keep up the great work. Doug Haney (Author: > "Toxic Mold! Toxic Enemy!") (916) 972-7783 or Medcorp68@...> > > >From: "bherk" <bherk@...>> >Reply- > >"Sick Buildings" < >> >Subject: [] Fw: Mycoplasma> >Date: Thu, 1 Feb 2001 04:43:42 -0500> >> >I believe it .> >> >B> >> >----- Original Message -----> >From: " " <erikj@...>> >"bherk" <bherk@...>> >Sent: Thursday, February 01, 2001 12:58 AM> >Subject: Mycoplasma> >> >> >: I tested positive for mycoplasma Fermentans at Garth Nicolsons lab> >: ( www.immed.org ) I've been on Doxycycline almost a year now. Mold> >avoidance> >: and Doxycycline has made all the difference in the world. I used to have> >: sleep disorders and blinding headaches and other problems too numerous to> >: mention. I got rid of all of them. I have complete control over whether > >or: not I get a headache. Sometimes I don't adhere rigidly to my mold> >avoidance procedure and suffer the consequence, but I know how to get rid of> >: headaches now. My brave girlfriend is working in a moldy office and> >suffers greatly. I do my best to decontaminate and take care of her but it's hard> >to watch someone you love in so much needless pain. We're in Carson City,> >just a few miles south of Reno where the front page news story you sent us> >: occurred. We thought that would make others in that office take notice > >and help our credibility but they don't believe it. The receptionist there> >told me that she can't relate to my reactivity to mold because she isn't> >allergic to anything. Meanwhile I'm noticing the dark circles under her eyes, red> >: hands, veins standing out and the fact that she is chronically ill, has> >been diagnosed with FM and at the moment that I'm talking to her about mold,> >she has to get some more aspirin because she has a blinding headache. Go> >: Figure!> >: I've been told that I'm the perfect case of CFS by both peterson and> >cheney.> >: They never could help me in any way. Garth Nicolson tells me I have> >: mycoplasma. I take ABX, I avoid mold, I kick ass! Believe it or nuts.> >: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 I inadvertently omitted a couple of lines in the message I just sent. Please "add" them regarding: ----- Original Message ----- c) At the web site link you give, one can get to http://www.immed.org/illness/infectous_disease_research.html The mycoplasma referred to on that web page is NOT Mycoplasma fermentans! with respect to "respiratory" symptoms. M. fermentans is mentioned later on, in connection with HIV issues, [and I should could have been added specifically in the section on Urogenital, or GU, issues based on my own research data], but these do not appear to be relevant to your case. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 So, if I understand what you are saying Stanley, you are saying you haven't run across any research connecting mycoplasm fermentans and susceptibility to toxic mold poisoning. As you know, many of us worked in offices, schools or lives in homes that became contaminated with this stuff. I can't think of one case yet where everyone became ill. Probably the closest was the Job Journal. In my case, it was primarily the women, in particular pregnant women who were the most severely affected, along with immuno-compromised people, including those with health problems, diabetes and the like. But there were folks who didn't seem to show any indication of stachy illness. If you want to go back in the archives, you can read 's history of how he became ill at the same time a lot of people were coming down with something in Incline Village. I can't remember exactly which year that was, but I think sometime in the early 80's. Dr. was the one who treated a lot of people and ended up calling in the CDC. As I understand it, the CDC poked around a bit, and since folks weren't dying they didn't do much or follow up. According to Dr. , none of these folks have ever recovered. I have no idea how many of them, if any were ever tested for mycoplasm except for who has been very diligently trying to get well. We all can't help but notice the similarity in symptoms between us and the folks on Albert Donnay's " Immune " support group - most of whom suffer from the symptoms of MCS. On the CFIDS support group, we tend to see the same thing. You might recall that there was a big donnybrook a few years ago, when the CDC made off with millions in research dollars earmarked for CFIDS research and used it for something else, saying it was needed somewhere else. I haven't yet seen any big study that investigates these three somewhat overlapping disorders, even though estimates are that one in 20 has this. I would expect the NIH to be looking into this - but the CDC has basically said they could care less. Recently, several of the researchers like Drs. Kipen and Fiedler, as well as Dr. Hodgson who have been investigating the CFIDS epidemic and/or SBS like illnesses in America attended a seminar at Rutgers, for all these " mysterious " (their word, not mine) symptoms for which they cannot find a specific disease. These include chronic fatigue, irritable bowel syndrome, fibromyalgia, Gulf War Syndrome, Lyme disease, sick building syndrome, multiple chemical sensitivity, sensitivity to the gasoline additive MTBE, or connective tissue disorder, as in women with silicone breast implants. The most common symptoms, at least in patients ill enough to seek medical help, include headaches, fatigue, trouble concentrating or remembering things, nausea, unusual chest pain, shortness of breath, trouble sleeping and musculoskeletal pain. I can understand the pure pleasure that epidemiologists derive out of finding a true cancer cluster where everyone develops the same type of brain or organ cancer, because it is a direct link that was expected and fits the profile. However, for the life of me, I can't understand why so few people are drawn to the excitement of ferreting out the cause of an illness when we learn that a building or school is contaminated with an immunosuppressive toxin. You, of course, would have to be the Sherlock Holmes of investigators, but it would be a puzzle well worth tackling and hypothesizing about. To me, as a non-medical person - it doesn't take a leap of faith (certainly not like the one we are being asked to make in mad cow disease) to see the pattern and then work towards trying to disprove it. Since stachy has had so little attention, having only emerged in full force the past 20 or so years, I would think researchers would be beating down our door trying to study us and take tissue and blood samples, trying to find out why us and not our co-workers are affected. But that hasn't been the case - so we have tried in our own limited way to gather as much evidence as we could - telling each other intimate details of what our symptom constellations are - in order to leave a living archive for others. It is important to know what happens with long term exposure - after the runny noses and sore throats and coughing - what happens then. I have talked with people who think it is incredibly odd that there is a lot of us in the same age group - leaving them to wonder what, perhaps in our past did we all have in common that might have weakened our immune systems making us more susceptible to stachy - like the live polio vaccines. While others wonder if perhaps the stachy itself has changed. Someone needs to utilize the PCR technology and whatever other testing is out there and compare our group with normal populations. On that we can all agree. I don't know enough about the pure science behind Dr. Nicholson's research to comment on it but I find it really odd that when he started seriously looking into mycoplasm, the Cancer Institute started giving him problems. A man with his medical credentials - like Dr. Dorr Dearborn when he made the link between stachy and bleeding lungs getting the cold shoulder from the power elite in his profession tell those of us who read between the lines a lot more than anything else that is said. Since Dr. Nicholson set up his lab, there have been other problems too including a professional break in and intimidation tactics. This give me a lot of hope. Why? Well look at what happened to the scientists who didn't go along with party line on mad cow disease - like Mark Purdey and who have been cut off from funding and marginalized from main stream medicine. Since you have the credentials, maybe you could help get us on the track by designing a form for us to use that will prove useful to other epidemiologists - one that might entice them to take a second look at what is happening to us and seek out funding to see if they can figure it out. I'm sure you can tell from the kind of posts we get day in and day out around here - there is a whole lot of misinformation out there and a long way to go before people can feel safe working where they have no control over air quality. If taking antibiotics and avoiding mold works for , I say more power to him because he sure is doing a hell of a lot better these days than I am or the other folks who lost their health that season at Incline Village. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Barbara- Thank you Barbara for your note - it greatly helped clarify some of the concerns I have seen mentioned by those on this list. I had not known the origin of this list. Not that a number of you were concerned about a specific cluster. I had assumed this was a " national " list... You correctly summarize that I indicated I " haven't run across any research connecting mycoplasma fermentans and susceptibility to toxic mold poisoning " . It happens I attended most of the first day at that recent EOHSI conference in Piscataway. Very much " garbage " has been published related to mycoplasma, so scientists will very carefully look over anything on this topic. Newcomers to research in the area of mycoplasma usually err, and the pros have a tough time too. (Mycoplasmas love to grow in enriched cell cultures, and can contaminate cultures - especially ones with some antimicrobials in them that ward off some other contaminants. SO, totally artifactual reports are very common.) I, too, would think that careful examination of your material would be worthwhile; but that is probably a pretty big project for someone to take on. You very kindly inquire " Since you have the credentials, maybe you could help get us on the track by designing... " At the moment, I am very far over committed in terms of active projects, and thus am reluctant to add new commitments despite my academic interest indeed having been perked. If there are funding opportunities that come along that you think could " take advantage " [in a purely positive sense] of your cluster that we could apply to for funding, then I would be willing to consider it. Alternatively, if I come across a grad student who may want to get involved as a field project under my guidance, I'll let you know. Otherwise, I think I had best leave my input to an occasional note if I read something .... By the way, the volume on this list-serve is too voluminous for me to regularly read all posts (although most are quite interesting)...so send any e-mail directly to me, rather than thru the list itself, if you require a reply. Stan Weiss ----- Original Message ----- From: " bherk " <bherk@...> " Sick Buildings " < > Sent: Tuesday, February 06, 2001 10:31 AM Subject: [] Re: Mycoplasma > So, if I understand what you are saying Stanley, you are saying you haven't > run across any research connecting mycoplasm fermentans and susceptibility > to > toxic mold poisoning. As you know, many of us worked in offices, schools or > lives in homes that became contaminated with this stuff. I can't think of > one case yet where everyone became ill. Probably the closest was the Job > Journal. In my case, it was primarily the > women, in particular pregnant women who were the most severely affected, > along with immuno-compromised people, including those with health problems, > diabetes and the like. But there were folks who didn't seem > to show any indication of stachy illness. > > If you want to go back in the archives, you can read 's history of how > he became ill at the same time a lot of people were coming down with > something in Incline Village. I can't remember exactly which year that was, > but I think sometime in the early 80's. Dr. was the one who > treated a lot of people and ended up calling in the CDC. As I understand > it, the CDC poked around a bit, and since folks weren't dying they didn't do > much or follow up. According to Dr. , none of these folks have ever > recovered. I have no idea how many of them, if any were ever tested for > mycoplasm except for who has been very diligently trying to get well. > > We all can't help but notice the similarity in symptoms between us and the > folks on Albert Donnay's " Immune " support group - most of whom suffer from > the symptoms of MCS. On the CFIDS support group, we tend to see the same > thing. You might recall that there was a big donnybrook a few years ago, > when the CDC made off with millions in research dollars earmarked for CFIDS > research and used it for something else, saying it was needed somewhere > else. I haven't yet seen any big study that investigates these three > somewhat overlapping disorders, even though estimates are that one in 20 has > this. I would expect the NIH to be looking into this - but the CDC has > basically said they could care less. > > Recently, several of the researchers like Drs. Kipen and Fiedler, as well as > Dr. Hodgson who have been investigating the CFIDS epidemic and/or > SBS > like illnesses in America attended a seminar at Rutgers, for all these > " mysterious " (their word, not mine) symptoms for which they cannot find a > specific disease. These include chronic fatigue, irritable bowel syndrome, > fibromyalgia, Gulf War Syndrome, Lyme disease, sick building syndrome, > multiple chemical sensitivity, sensitivity to the gasoline additive MTBE, or > connective tissue disorder, as in women with silicone breast implants. The > most common symptoms, at least in patients ill enough to seek medical help, > include headaches, fatigue, trouble concentrating or remembering things, > nausea, unusual chest pain, shortness of breath, trouble sleeping and > musculoskeletal pain. > > I can understand the pure pleasure that epidemiologists derive out of > finding a > true > cancer cluster where everyone develops the same type of brain or organ > cancer, because it is a direct link that was expected and fits the profile. > However, for the life of me, I can't > understand why so few people are drawn to the excitement of ferreting out > the cause of an illness when we learn that a building or school is > contaminated with an immunosuppressive toxin. You, of course, would have to > be the Sherlock Holmes of investigators, but it would be a puzzle well worth > tackling and hypothesizing about. To me, as a non-medical > person - it doesn't take a leap of faith (certainly not like the one we are > being asked to make > in mad cow disease) to see the pattern and then work > towards trying to disprove it. Since stachy has had so little attention, > having only emerged in full force the past 20 or so years, I would think > researchers would be beating down our door trying to study us and take > tissue and blood samples, trying to find out why us and not our co-workers > are affected. > But that hasn't been the case - so we have tried > in our own limited way to gather as much evidence as we could - telling each > other intimate details of what our symptom constellations are - in order to > leave a living archive for others. It is important to know what happens > with long term exposure - after the runny noses and sore throats and > coughing - what happens then. > > I have talked with people who think it is incredibly odd that there is a lot > of us in the same age group - leaving them to wonder what, perhaps in our > past did we all have in common that might have weakened our immune systems > making us more susceptible to stachy - like the live polio vaccines. While > others wonder if perhaps the stachy itself has changed. Someone needs to > utilize the PCR technology and whatever other testing is out there and > compare our group with normal populations. On that we can all agree. > > I don't know enough about the pure science behind Dr. Nicholson's research > to comment on it but I > find it really odd that when he started seriously looking into mycoplasm, > the Cancer > Institute started giving him problems. A man with his medical credentials - > like Dr. Dorr Dearborn when he made the link between stachy and bleeding > lungs getting the cold shoulder from the power elite in his profession tell > those of us who read between the lines a lot more than anything else that is > said. Since Dr. Nicholson set up his lab, there have > been other problems too including a professional break in and intimidation > tactics. This give me a lot of hope. Why? Well look at > what happened to the scientists who didn't go along with party line on mad > cow disease - like Mark Purdey and who have been cut off from funding and > marginalized from main stream medicine. Since you have the credentials, > maybe you could help get us on the track by designing a form for us to use > that will prove useful to other epidemiologists - one that might entice them > to take a second look at what is happening to us and seek out funding to see > if they can figure it out. I'm sure you can tell from the kind of posts we > get day in and day out around here - there is a whole lot of misinformation > out there and a long way to go before people can feel safe working where > they have no control over air quality. If taking antibiotics and avoiding > mold works for , I say more power to him because he sure is doing a hell > of a lot better these days than I am or the other folks who lost their > health that season at Incline Village. > > Barbara > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Actually, almost all the members of our group are only connected by their exposure. Some are families who have had construction defects leading to mold exposures, others have worked in moldy schools (we have a LOT of teachers dx with fibro, CFS and toxic encephalophy), offices and problem buildings. We have people from 12 counties on the list and at the rate we ae growing, this problem is even worse than I thought. We are interested, however in specific " outbreaks " for what they might tell us - like the Incline Village/Truckee one we have been discussing recently. And we welcome ideas and observations frome veryone - thri story, how the problems unfolded in their lives and details, so they can be shared with the researchers and others who are seriously interested in figuring this puzzle out. It is okay to disagree on this list and give your reasons - just as it is okay to pitch in and advise someone who is going through an exposure and has their life in upheaval. We have occ med folks, IAQ folks and everyone in between who monitor our list - the good guys along with the bad guys who are working on ways to keep the bottlenecks in place and the public from learning what a big part environment exposures play in their lives. You said: " Mycoplasmas love to grow in enriched cell cultures, and can contaminate cultures - especially ones with some antimicrobials in them that ward off some other contaminants " - and I am going to pass this thought on to . Can you think of any instance in our lives when a cell culture or other culture might have been contaminated with mycoplasm and we became exposed? vaccines? any others? remember, that this whole CFS/Fibro/immune system disease epidemic has hit a certain age group basically the mid 40 to mid 50 age group very hard. I believe the largest group for CFS victims did a survey and this was the age group most highly laid low - someone correct me if I am wrong. Most of all we hope we fit a need that people have to try and control what is going on around them and make sense of it all. While controlling our lives - the inputs into our air, water and food supply is an almost impossible pursuit - we at least try to make each other aware and propose working towards a legacy for our children that doesn't include liver cancer from mycotoxins in our diet, asthma from diesel and other air quality issues or brain damage from exposure to pesticides or toxic molds. As I've said before - the black hole of information on toxic molds needs to stop - and we will have accomplished something when all the doctors out there have that light go on in their eyes when faced with this. Of course, I wouldn't mind seeing technology provide us with a few cool tests and tools - like a method of seriously continuously monitoring air quality - that hospitals could install so we don't end up with another outbreak like the one in California last year and that schools could install so our most previous " resource " of all would be assured of making it through school without being poisoned by their school.. Oh hell, the truth is I ask a lot - out of myself and out of others and so do a bunch of the folks on this list. We aren't asking Washington or even government to provide us with these things - the free market will do a lot of it quite nicely as evidenced by the movement to develop a " certified organic " designation and the outcry of the " food industry " to torpedo it. I know all of this rolled up is probably frustrating to today's specialist who is an expert in one specific thing, but I sincerely believe that our survival as a species depends on this. It is all the pieces of this patchwork quilt that make for the group's humanity and the spiritual connection to each other and something higher that keeps us looking for the answers. I guess I told you more than you want to know - but to even have an intern looking at the problem of toxic mold contamination and why one person and not the other would just be incredible. My physics instructor, the brilliant Milliken once said that the pattern of it all was so brilliant that it blinded him, so he had to look at one piece at a time in order not to go blind. It was enough for him to know that while he might never get the point of view that allowed him to " see it all " - it was enough to know that there was a pattern that could keep him busy the rest of his life, happily connecting the dots. Barbara These are my thoughts and opinions - so take them for what they are owrth. Your opinions are always welcome. ----- Original Message ----- From: " Stanley H. Weiss, M.D. " <weiss@...> < > Cc: " bherk " <bherk@...> Sent: Tuesday, February 06, 2001 5:58 PM Subject: Re: [] Re: Mycoplasma : Barbara- : : Thank you Barbara for your note - it greatly helped clarify some of the : concerns I have seen mentioned by those on this list. I had not known the : origin of this list. Not that a number of you were concerned about a : specific cluster. I had assumed this was a " national " list... : You correctly summarize that I indicated I " haven't run across any : research connecting mycoplasma fermentans and susceptibility to toxic mold : poisoning " . : : It happens I attended most of the first day at that recent EOHSI conference : in Piscataway. : : Very much " garbage " has been published related to mycoplasma, so scientists : will very carefully look over anything on this topic. Newcomers to research : in the area of mycoplasma usually err, and the pros have a tough time too. : (Mycoplasmas love to grow in enriched cell cultures, and can contaminate : cultures - especially ones with some antimicrobials in them that ward off : some other contaminants. SO, totally artifactual reports are very common.) : : I, too, would think that careful examination of your material would be : worthwhile; but that is probably a pretty big project for someone to take : on. : : You very kindly inquire " Since you have the credentials, maybe you could : help get us on the track by designing... " At the moment, I am very far : over committed in terms of active projects, and thus am reluctant to add new : commitments despite my academic interest indeed having been perked. : If there are funding opportunities that come along that you think could : " take advantage " [in a purely positive sense] of your cluster that we could : apply to for funding, then I would be willing to consider it. : Alternatively, if I come across a grad student who may want to get involved : as a field project under my guidance, I'll let you know. Otherwise, I : think I had best leave my input to an occasional note if I read something : ... By the way, the volume on this list-serve is too voluminous for me to : regularly read all posts (although most are quite interesting)...so send any : e-mail directly to me, rather than thru the list itself, if you require a : reply. : : Stan Weiss : : ----- Original Message ----- : From: " bherk " <bherk@...> : " Sick Buildings " < > : Sent: Tuesday, February 06, 2001 10:31 AM : Subject: [] Re: Mycoplasma : : : > So, if I understand what you are saying Stanley, you are saying you : haven't : > run across any research connecting mycoplasm fermentans and susceptibility : > to : > toxic mold poisoning. As you know, many of us worked in offices, schools : or : > lives in homes that became contaminated with this stuff. I can't think of : > one case yet where everyone became ill. Probably the closest was the Job : > Journal. In my case, it was primarily the : > women, in particular pregnant women who were the most severely affected, : > along with immuno-compromised people, including those with health : problems, : > diabetes and the like. But there were folks who didn't seem : > to show any indication of stachy illness. : > : > If you want to go back in the archives, you can read 's history of how : > he became ill at the same time a lot of people were coming down with : > something in Incline Village. I can't remember exactly which year that : was, : > but I think sometime in the early 80's. Dr. was the one who : > treated a lot of people and ended up calling in the CDC. As I understand : > it, the CDC poked around a bit, and since folks weren't dying they didn't : do : > much or follow up. According to Dr. , none of these folks have : ever : > recovered. I have no idea how many of them, if any were ever tested for : > mycoplasm except for who has been very diligently trying to get well. : > : > We all can't help but notice the similarity in symptoms between us and the : > folks on Albert Donnay's " Immune " support group - most of whom suffer from : > the symptoms of MCS. On the CFIDS support group, we tend to see the same : > thing. You might recall that there was a big donnybrook a few years ago, : > when the CDC made off with millions in research dollars earmarked for : CFIDS : > research and used it for something else, saying it was needed somewhere : > else. I haven't yet seen any big study that investigates these three : > somewhat overlapping disorders, even though estimates are that one in 20 : has : > this. I would expect the NIH to be looking into this - but the CDC has : > basically said they could care less. : > : > Recently, several of the researchers like Drs. Kipen and Fiedler, as well : as : > Dr. Hodgson who have been investigating the CFIDS epidemic and/or : > SBS : > like illnesses in America attended a seminar at Rutgers, for all these : > " mysterious " (their word, not mine) symptoms for which they cannot find a : > specific disease. These include chronic fatigue, irritable bowel : syndrome, : > fibromyalgia, Gulf War Syndrome, Lyme disease, sick building syndrome, : > multiple chemical sensitivity, sensitivity to the gasoline additive MTBE, : or : > connective tissue disorder, as in women with silicone breast implants. : The : > most common symptoms, at least in patients ill enough to seek medical : help, : > include headaches, fatigue, trouble concentrating or remembering things, : > nausea, unusual chest pain, shortness of breath, trouble sleeping and : > musculoskeletal pain. : > : > I can understand the pure pleasure that epidemiologists derive out of : > finding a : > true : > cancer cluster where everyone develops the same type of brain or organ : > cancer, because it is a direct link that was expected and fits the : profile. : > However, for the life of me, I can't : > understand why so few people are drawn to the excitement of ferreting out : > the cause of an illness when we learn that a building or school is : > contaminated with an immunosuppressive toxin. You, of course, would have : to : > be the Sherlock Holmes of investigators, but it would be a puzzle well : worth : > tackling and hypothesizing about. To me, as a non-medical : > person - it doesn't take a leap of faith (certainly not like the one we : are : > being asked to make : > in mad cow disease) to see the pattern and then work : > towards trying to disprove it. Since stachy has had so little attention, : > having only emerged in full force the past 20 or so years, I would think : > researchers would be beating down our door trying to study us and take : > tissue and blood samples, trying to find out why us and not our co-workers : > are affected. : > But that hasn't been the case - so we have tried : > in our own limited way to gather as much evidence as we could - telling : each : > other intimate details of what our symptom constellations are - in order : to : > leave a living archive for others. It is important to know what happens : > with long term exposure - after the runny noses and sore throats and : > coughing - what happens then. : > : > I have talked with people who think it is incredibly odd that there is a : lot : > of us in the same age group - leaving them to wonder what, perhaps in our : > past did we all have in common that might have weakened our immune systems : > making us more susceptible to stachy - like the live polio vaccines. : While : > others wonder if perhaps the stachy itself has changed. Someone needs to : > utilize the PCR technology and whatever other testing is out there and : > compare our group with normal populations. On that we can all agree. : > : > I don't know enough about the pure science behind Dr. Nicholson's research : > to comment on it but I : > find it really odd that when he started seriously looking into mycoplasm, : > the Cancer : > Institute started giving him problems. A man with his medical : credentials - : > like Dr. Dorr Dearborn when he made the link between stachy and bleeding : > lungs getting the cold shoulder from the power elite in his profession : tell : > those of us who read between the lines a lot more than anything else that : is : > said. Since Dr. Nicholson set up his lab, there have : > been other problems too including a professional break in and intimidation : > tactics. This give me a lot of hope. Why? Well look at : > what happened to the scientists who didn't go along with party line on mad : > cow disease - like Mark Purdey and who have been cut off from funding and : > marginalized from main stream medicine. Since you have the credentials, : > maybe you could help get us on the track by designing a form for us to use : > that will prove useful to other epidemiologists - one that might entice : them : > to take a second look at what is happening to us and seek out funding to : see : > if they can figure it out. I'm sure you can tell from the kind of posts : we : > get day in and day out around here - there is a whole lot of : misinformation : > out there and a long way to go before people can feel safe working where : > they have no control over air quality. If taking antibiotics and avoiding : > mold works for , I say more power to him because he sure is doing a : hell : > of a lot better these days than I am or the other folks who lost their : > health that season at Incline Village. : > : > Barbara : > : > : > : > : : Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Patty,and everyone, It seems the herxheimer reaction is in effect on me even at 50 mg 3 times a week. I haven't even had the energy to research or answer anyone. I want to thank you and Martha for all the info on iron and C3 compliment. I understood the doctor to say it was related to the thyroid problem, but I could have misunderstood him. I am going to stop the iron for now until I talk to him again. I don't know how long this effect will happen, but I am so leary of building up to 200mg a day. I am taking acidophllus, and watching diet and all the usual precautions, along with all the supplements. I'm about to start the coffee enemas, keeping juice available, and am drinking one gallon of distilled water daily, and taking a colon cleanse supplement. I do pray for you all and read . I admire your stamina, and dedication, to this group, but I am leary of offering any advice or reports as this is all such a puzzle for me and I am not getting the quick answers I am used to. What a lesson...Thanks so much for eveerything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 Hi , How are you doing now....still having the herxheimer reaction going on with the antibiotic? It sounds like you are doing many of the right things....the coffee enemas, colon cleansing, juicing, etc. Just keep on this track. I am sure that in time you will notice small improvements in gradual steps. Remember it takes the immune system a long time to recover. The gains are never in leaps and bounds. love, Patty ----- Original Message ----- From: <summer234562001@...> < > Sent: Tuesday, June 26, 2001 10:13 AM Subject: Mycoplasma > Patty,and everyone, > It seems the herxheimer reaction is in effect on me even at 50 > mg 3 times a week. I haven't even had the energy to research or > answer anyone. I want to thank you and Martha for all the info on > iron and C3 compliment. I understood the doctor to say it was related > to the thyroid problem, but I could have misunderstood him. I am > going to stop the iron for now until I talk to him again. I don't > know how long this effect will happen, but I am so leary of building > up to 200mg a day. I am taking acidophllus, and watching diet and > all the usual precautions, along with all the supplements. I'm about > to start the coffee enemas, keeping juice available, and am > drinking one gallon of distilled water daily, and taking a colon > cleanse supplement. I do pray for you all and read . I admire your > stamina, and dedication, to this group, but I am leary of offering > any advice or reports as this is all such a puzzle for me and I am > not getting the quick answers I am used to. What a lesson...Thanks > so much for eveerything. > > > Quote Link to comment Share on other sites More sharing options...
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