shazdancer

Whoo, I step away from the keyboard for a day... Geo, I have no problem being VERY skeptical of alternative therapies. I frequent a Lyme message board where a lot of strange alternative therapies are propounded (foot patches, ICHT, Rife, colloidal silver, frequent colonics, people who take dozens of pills a day, etc.), and I absolutely advocate for science-backed medicine. It's actually funny that I'm talking about alternative here. However, there are times where a conservative use of alternative medicine is warranted, although if someone is seriously ill, HE SHOULD BE WORKING WITH A KNOWLEDGEABLE DOCTOR. (Ow, that hurt my ears... :D ) I know of people for whom allopathic medicines didn't work. I know of some who don't tolerate the side effects of traditional medicines (they can be worse than the disease itself for some) and just seek enough symptom relief in the gentlest way they can think of to allow them to function. And the cost of traditional medicine sadly keeps some patients away. Then there are some who just believe that "natural is better." Of course that's not always true. And we often have less certainty about the content of "natural supplements" than we do of synthetic ones. And Chas, we both know that some natural herbs and alternative therapies can have side effects that are just as serious as those of allopathic medicine. So I will never advocate for all alternative treatments as safe, and I'm sure you wouldn't either. Geo, some vitamins, supplements, and alternative products have been studied scientifically. But some products just don't get tested because their use isn't profitable enough to warrant the expense. Some of the biggest funders for longterm double-blind studies are the prescription drug companies. And don't get me started on peer-review publishing! There are actually 2 standards of care in Lyme treatment, and the guidelines for both have been published in peer-review. Legally, that leaves the decision for how to treat up to the patient. Yet Lyme doctors' licenses are being threatened for their treatment of patients using the long-term antibiotic treatment protocol. A respected doctor in NC who treats HIV and Lyme will be involved in medical board hearings this week for exactly that. There are two pretty badly-constructed published studies that researchers claim "proves" that long term antibiotic therapy does nothing for persistent Lyme disease. And the extrapolations from those studies -- that chronic Lyme doesn't even exist -- defy logic. A third study, by a doctor from Columbia who has published numerous times before, refutes the conclusions of the other 2 studies. The study that shows that longer-term antibiotic therapy can be effective in the treatment of persistent Lyme symptoms has been held up in the peer-review process for over a year now. Why? don't wanna pi** off a few good ol' boys? So I am not a huge believer in the peer-review process as the perfect solution to getting to good science. And while I'm on my "favorite" subject, read THIS, the most succinct thing I've ever seen (by my Lyme doc, no less! :D ) about the problems of accurate testing, diagnosis, and treatment of tick-borne disease. If any of you have any inkling that you may have Lyme disease despite negative tests, you should read this article. Regards, Shaz

Ah yes, the "monsoon" in Phoenix. The joke is that Phoenix gets 5 inches of rain a year, and it's on a Tuesday.... {rimshot goes here} I've never seen a dust storm come on quite like that, but the day I saw a dust devil sever a tree limb off a mature tree right in front of me (while everything else around it was calm), I figured it was time to go inside!

Hi Seth, glad to hear you are feeling better. I remember when you posted you were feeling poorly, and I was wondering what had happened. Take care, Shaz

http://www.ilads.org/burrascano_1102.htm#supplements Stretching, yes! Yoga, ballet, swimming and water exercise, walking, weight training but don't overdo. Heat, ahhh... epsom salt baths, sauna. Rest, and stress reduction. More later, Shaz

I hear you, BB, but I would warn anyone who thinks there might even be a chance of Lyme disease to not take steroids unless they have ruled Lyme out, because a lowered immune system (from the prednisone) is like inviting the bacteria to go where they want. 'Course, the problem is, the blood tests for Lyme are pretty unreliable. Scout, you've had a positive RA test, family history and joint distortion. Sounds like RA is it. If it were me (get the wording, I'm not a doctor) and my results were atypical (Chas, your story sounds so Lymie to me) I would seek a Lyme-literate doc, and have him monitor me on a trial of antibiotics. If I have a Jarisch-Herxheimer reaction (symptom flair), I would go with a Lyme diagnosis with or without positive bloodwork. Okay, with the requisite Lyme sermon out of the way: to answer your question Scout... I have Lyme arthritis (fairly mild) and Glucosamine did nothing for me, either. Someone suggested the old Jarvis tonic of cider and vinegar, so son and I tried it. I found virtually no improvement in the joints, but we both found a mild antihistamine-type reaction, so it may help you, especially if you are feeling sensitive to sugars and starches. Chas' diet is great for that, too, Lyme patients use those recommendations a lot to keep yeast and sugar sluggishness low. I'll be back in the morning with a few more ideas, but for now, ZZzzzzzz........ -- Shaz

Yeah, Tom, and stupid me, I was thinking it was gonna be bigger! Took one look and went "D'oh!"

Coverage seems to have stayed on the local level, but here's a few links: Connecticut Fox News Video Danbury News-Times Ridgefield Press There is also an article about severe Lyme in today's New York Times HERE . A very welcome piece, from a newspaper that has run more than one article denying that there is any such thing as severe or chronic Lyme. -- Shaz

Just got back from the rally last night, and wanted to tell you how it went... I truly had a great time, and felt like good information was shared. I thought it was so important, that I brought son Jake along. He spoke and shared his story. Hey, if he's having trouble learning history, maybe he can learn something making a little history! It was very tough getting Jake to wake up that morning, as his antibiotics were increased recently, and he is reacting to increased germ die-off. (Called a Jarisch-Herxheimer reaction, or herx for short.) He was draggy for much of the day, but he was in good spirits, and he did GREAT reading his story! I was really proud of him, especially given the circumstances. Some impressions... A tent was set up in advance, which was definitely necessary, as it rained much of the time. A row of tables at one end offered handouts, videos, Lyme magazines and books could be had, etc., and I left about 10 Lyme pins out, money to go to Dr. Jones, and they sold in about 10 minutes! People were there from Fl, MA, RI, NH, NJ, MD, and CA, and other states, and there were posters naming other states who wanted their voices heard. Over 200 people were in attendance. Brooke Landau acted as MC. She works for E! Entertainment and was interviewed for the Today show a year ago. She'd had a tough case of Lyme paralysis, and was eventually "jump started" toward better health with a month of hyperbaric oxygen treatments. She mentioned that her parents had the financial means to do anything to get her well (and spent over $250,000 doing it), but money means nothing if the research isn't there to give direction, and if the doctors aren't there to administer proper treatment. Dr. Joseph Burrascano spoke about the complexities of diagnosing Lyme, and how the testing is so flawed. He said that the reason some labs (like Quest) don't report the results of the Western Blot in more detail (which would help in diagnosis) is because they must go by the directions on the test kit they are using. Other labs that don't use that particular kit can report more thoroughly. He mentioned that DNA tests are admissible as evidence in court, yet not accepted for Lyme diagnosis. Pat Smith, who heads the Lyme Disease Association, spoke poignantly about her own daughter's case. I hadn't heard the details of her story before. Her daughter's symptoms had worsened to where she was having all-day seizures, yet they still no diagnosis. She finally curled up in a fetal position one day, and they thought she would die. She was finally treated for Lyme, and as an adult she now works for a peer-reviewed medical journal. Pat had vowed never to let another family go through advocating for a Lyme patient alone, as she'd done. She also said that parents are never doubted if they say their children have cancer or diabetes, compensations are willingly made, but if you say Lyme, educators are suspicious and reluctant. Social worker Sandy Berenbaum spoke about the importance of having educational support for children with Lyme, and how hard it can be to get that at this time, since so many doubt that severe or chronic Lyme even exist. She mentioned that long-term antibiotics are used to treat acne and TB and other illnesses, and are put into cattle feed when the cattle aren't even sick, and no one questions that use, but the Infectious Disease Society complains that docs who use long-term antibiotics on sick patients may create resistant bacterial strains. CT Attorney General Blumenthal spoke about the need to return to case reporting by labs, not doctors, and cited statistics that showed the numbers for CT plummeted when the labs no longer had to report. He also mentioned that lower numbers means less money is allocated from the federal government for education and research. He is advocating for a digital method to report confirmed cases, making it easier for docs and labs to comply. Dr. Jones spoke only briefly to say thank you and to encourage continued support over his medical board case. He said he is fighting the medical board charges (that he prescribed antibiotics over the phone, contrary to the "accepted atandard of care") because he feels a sense of mission to continue to help children sick with Lyme disease. He also encouraged everyone to attend the next hearing, which is June 22. The kids spoke last. The young children were sweet and spunky, and the teens, who were more literate and introspective, were chilling and heart-wrenching, to me. Many of them have lost much of their childhoods to this disease. Some expressed thankfulness that they weren't worse off, or had gained insight into what was important in life. Others mentioned that they were so used to being ill that they didn't realize what was missing until they began to get well. Sad that young children are so acquainted with the vocabulary of disease, like "intravenous" and "misdiagnosis." Jake spoke next to last. We were both surprised at how deep his voice is sounding when he projects! He spoke about recovering so much that he was able to participate in the Ya-Ya Walk Against Lyme, and walked 46 miles in April. The audience went "whoa!" because most of them were either patients or parents of sick kids, and they know how debilitating the disease is. Many stopped to thank him afterward, or share bits of their own stories. I met several people that I only knew through cyberspace. Lots of media were there -- hoping this gets good coverage. regards, Shaz

Thanks, chef! And thanks, everyone, for keeping the rally in your thoughts and prayers tomorrow. AND... ...I finally got the information back about we did on the Ya-Ya Walk Against Lyme Disease. Hard to get everyone to communicate, since it was all done by email at a very busy time of year. But the results are: OUR TEAM WON!!! The other team will need to fork over about $150 total to a Lyme cause. I call that a WIN for everybody. In addition, my son "Jake" and I were able to give over $450 in pledges and donations to the Charles Ray Jones Defense Fund and the LymeAid4Kids fund. I am touched by the caring of everyone who participated, both from the Ya-Ya board who walked, and from those of you here who donated. I don't want to name you all, you'll might get solicited to death, but you and I both know who you are, and I am humbled and grateful. See if we make it onto the news tomorrow and Saturday morning... Shaz

Hey danteh, there was an article about Opus Dei in Time magazine a few weeks ago, and yeah, it sounded very TWI-like to me, too. Different levels of involvement. The leadership saying they had no control over how people applied what they taught. A belief that Opus Dei was preserving "true Christianity." The most devoted followers live austerely. Women are second-class citizens. Regards, Shaz

Hi, everyone! Here's the link to the announcement:Lyme Rights Rally -- June 2, 12-3 p.m., Hartford, CT Something very exciting is coming up this Friday, June 2. Lyme patients and families from all over the country are going to gather in Hartford, CT for a rally on behalf of our physicians, and our right to be treated by them. Why rally? Because physicians are being persecuted by medical boards for prescribing long-term antibiotics for severe cases of Lyme disease, the same kind of treatment that has helped Rebecca Wells, and Amy Tan, and me, and my son. Many insurance companies are refusing to pay for such treatments. And even in Lyme-endemic Connecticut, patients are languishing for months and years without an accurate diagnosis. We are greatly in need of better tests, better research, and better-educated physicians. Why Hartford? First, because CT has one of the highest rates for Lyme in the country. (The disease is named for Lyme, CT.) Second, because Hartford is the "insurance capital of the world." Thirdly, because Dr. Charles Ray Jones, one of our most-beloved physicians, a pediatric expert in Lyme who has treated over 8,000 children, is under investigation by the CT medical board for prescribing antibiotics to 2 children out of state. They asked him to surrender his medical license, or face the board. He is 77 years old, but he still feels a responsibility to his patients. He has chosen to fight the charges. Guest speakers at the rally will include CT Attorney General Richard Blumenthal and E! Entertainment reporter Brooke Landau (Brooke had had a very severe case of Lyme, and her story was featured on the Today show.) Several children will tell their Lyme stories, including my son. The CT media will be there, and we may get coverage through the national press as well. If any of you can attend, by all means do so! You will find it enlightening as well as upsetting. But your presence can help us further the cause of educating the public, and our legislators, in this disease that is far more than flu-like symptoms and a swollen knee. Please wear Lyme green on Friday, June 2, in support of Lyme patients who suffer, both from the disease and from ignorance. Regards, Shaz

Thanks for the Brandenburg #3 in G Major, sudo. One of my all-time favorite pieces of music. Danced to it in high school. Used the Wendy ("Walter," thanks for the reminder, david!) Carlos version of the second movement (which is only a couple of transitional chords in the original) in junior high for an oral book report in which I danced. Always nice to hear some of that good "seed boy" music! Maybe Wierwille was just jealous. As to returning to "old man" ways, I didn't. I had 2 young girls to support, and besides, I was never much of a rebel to begin with. And I had one foot solidly in the world the whole time I was in TWI. The one thing I didn't become was a greasespot! Regards, Shaz

Well, Safari, the other thing that I was not "blessed" with was the other thing he used the motorcoach for, and that was as his personal Romper Room with the ladies of TWI. Looking back, I wasn't particularly attractive, hadn't admitted to being particularly vulnerable, and had a tattooed husband from New Yawk whose cooking skills VP wanted. I still hadn't gotten past the cognitive dissonance of his actions v. his knowledge of the Bible. I was also trying to be grateful for just being there, because an exception had been made for us, due to my pregnancy. (Again, they wanted my husband on Staff.) If I'd pressed the issue, I probably would've been kicked out, and the followers would've been told I was a cop-out or possessed, as was so often the case. As it was, I left one step before being booted, but not before politely telling a few leaders (including Wierwille) to stuff it. :D Shaz

(Okay, Shazzie getting graphic here... ) Galen, Wierwille said it in the Christian Family and Sex class. Looking back, I think he was talking about himself a lot of the time, what would turn HIM on, what HIS sexual experience was like, etc. Does anyone remember his statement about how a woman could make a man almost climax by how she touched his penis? Maybe he was talking about himself.... I've gotta admit that I've been with a few fragile egos when it came to bedroom behavior, and they didn't WANT to hear from me what would turn ME on. Had other parts of our lives been great, it wouldn't have mattered all that much. But in Wierwille's case, I can imagine that his big false self couldn't have handled a hit like, "You're not doing it right, do this." But that he would have no trouble thinking he could "teach" others how to pleasure HIM, with no regard to needing to pleasure THEM in a mutual relationship. I have met plenty of men who were not boobs when it came to being sensitive to others' feelings, and plenty of women who were (for example, I knew one guy who was big on memorializing special days like the anniversary of our first date, while I am not), so I guess that quote may be enough of a generality as to be worth zero. So here's what I think is the subtext to what Wierwille was trying to say... "A man teaches a woman to love with her body {bend over here, touch this, lick that, it turns me on to boss you around}... "A woman teaches a man to love with her heart {I guess I should hug her once in awhile and not forget our anniversary, so I can later get her to bend over, touch this, lick etc.}." Exy, you know it wasn't about being an expert at all, it was about his power trip. He wasn't thinking about how it would affect you at all, he didn't care. That is the essence of the Narcissistic Personality: they can't empathize. They think everyone uses everyone else, because that's what they do. -- Shaz

I've told this story before, but it fits here, lest anyone think that Loy was the originator of the VIP treatment for the MOG. He learned it from Wierwille. When I was in-res in Rome City (1979-80), I noticed that Wierwille's comings and goings were treated like royalty. I was perplexed, because I thought that the whole point of the Corps program was to learn more about serving God's people by working alongside the leaders. I could understand protocol at big functions, but protocol and special treatment in the day-to-day? Even the Corps coordinator had a separate apartment suite and servants to clean it. I was seeing Corps training as no more intimate with leadership (including Wierwille) as any other Way training I'd ever had, and we were accorded no more respect for our own commitment than a non-grad neophyte in Twig. What finally prompted me to ask him about it was when he made a statement about it, real humble-like, "I wish I could just come and go without a fuss, but I guess I can't." As if it was somehow our fault for making him put up with the hoopla. I knew a simple word from him, and the hoopla would stop. So the next evening, when we were allowed to sign up to have a private meeting with Wierwille on the motorcoach, I signed up (still thinking that our opinions actually mattered). ME: I'm curious about something. When we know that you are coming to visit, we are told things like, "Dr. Wierwille is coming, be sure to make things extra clean," and stuff like that. Now, my understanding is that we should be doing our best for all the saints, so how could we and why should we do even more? VPW: Aww, I guess they just wanna bless me, is all. Anything else? {end of discussion} I know this is not a huge transitional moment, and I will not embellish it to make it seem like more than it was. However, it did give me a little insight into the man, that he was not going to put an end to MOG treatment. There are others who have confirmed that he insisted on special treatment, right down to how many mints on the pillow, and reamed a new one out of anyone who didn't comply. Luckily, I was not so "blessed," I was just ignored. Regards, Shaz

That's 3 variations on Rooster Rhapsody, I think that's a keeper. -- Shaz

For those who truly want to know... http://fcit.usf.edu/holocaust/resource/document/document.htm http://nizkor.org/ Start reading. Regards, Shaz

I married and divorced Fonzi a long time ago. I think some of us women (and men) are attracted to power and confidence. Perhaps we see the "bad boy" as someone who can get things done and not cave under authority. Look how we fell for Wierwille's shtick. Perhaps there is a mothering thing in us, thinking we can "rescue" this guy and bring out the true, inner good guy. When he looks our way, we think we see goodness, because he chose us, not a bad girl. But the reality is, he chooses us because he needs us to clean up after him, and to be his ever-available worshipper. This kind of bad boy needs a good girl, more than the good girl needs him. Safari, we stay too long in these relationships, I think, for a couple of reasons. One is that we believe in commitment, and don't want to throw it away over a "misunderstanding." So we work very hard at trying to make the bad guy understand us. The thing is, he probably understands our POV just fine, he just chooses to ignore it! Another reason is based on the beginning of the relationship. For the first few weeks, months, or even a year of the relationship, the bad-boy-who-looked-our-way makes us feel very special. We admire him, he takes care of us. We love him, he seems to love us back (he has learned to mirror our feelings back to us to gain our trust). Slowly over time, we give more, he gives less. Slowly over time, his resentment of us grows, especially as we begin to call him on his bad behavior. He begins to "put us in our place," trying to point out what bad people we are, worse than he is. In a few of us, the reasons we stay are more ominous: fear of being alone, fear that the bad guy will harm us if we try to leave. But despite what Wierwille taught, I have never spoken to an abused woman who wanted to be abused, not on any level. And I have spoken to a lot of them. The Fonzi in my TWI years drank, drugged, smoked, was abusive and unfaithful. When drinking, anything could happen, and sometimes did, usually leaving us broke. After I left him, he moved in with another woman with a better income than mine, before the ink was even dry on the divorce papers. He was happy to sign off on his parental rights, so he wouldn't have to pay child support (which he was behind on at the time). "Fonzi" continued to drink and abuse, and she continued to take him back. He bragged to our kids about his condo and his possessions, while telling them he "doesn't have it right now" when they asked for financial help. Today, I hear he's on oxygen support, probably due to the smoking. Dear Dot, I don't buy it that she can't get out. There are professionals who can help her get out with much of her stuff intact, or she can just walk (run!) away and start from scratch. Are there kids involved? Makes it trickier, but all the more necessary. PM me if you want. Regards, Shaz

Then produce your web-links to such "evidence." All you've produced are links to Sack's book, which I accept as basically true. Sacks adds additional information to the complex story of World War II.The book Seed of Sarah addresses the fact that the terrors of war and concentration camps brought out both the good and the bad in the Jewish prisoners. The book's author is Jewish, a Holocaust survivor, and a respected college professor (now retired). I have never denied that some people use the Holocaust for their own agenda. (Have you read what I wrote?) A minority of those may falsify information, but the majority don't need to, IMO. The Holocaust is horrific enough, and needs no embellishment. The Gayssot Act is applied in Europe, not the US. It was enacted in the 1990s. The facts of the Holocaust have been out long before then. (The link on page 1 of this thread sends you to film footage collected immediately after war, for example.) Holocaust deniers are not jailed or fined in this country. Their arguments are simply disproven. --Shaz

WTH, You ask (rhetorically perhaps, but I'll bite) You implied that you did, when you said... Sounds like you endorsed this book by saying it documents actual facts, facts which you quote in your argument -- this book you never read. Pretty weak to argue your point with a book whose authenticity you doubt.You go on (my responses in boldface): -- Shaz

Oh, no argument from me, Geo. I have 2 types of music that are not my cuppa: country western (especially the old stuff) and opera (too much Wagner in college). Though I love bluegrass, and I'm more of a Bach/Vivaldi fan than Handel. Yes, TWI going country in the 80s, arrghh! --Shaz

WTH, a lot of bad things happened in the confusion in the aftermath of WWII, and I think that in the interest of turning the war into sound bites, and in the interest of moving on, a lot of the wrongs have been under-discussed. I once spoke with a lady from Germany whose family colonized occupied Poland, sort of like what the Jews did on the West Bank. After the Allies took back Poland from the nazis, her family moved back to Germany, only to be treated as non-citizens in their own country, living in a squallid relocation camp with little food. She was about 3 years old. She wonders to this day why no one wants to hear her story of injustice. War is messy. The aftermath of war is messy. And unfortunately, it often leaves room for those with less thsn stellar motives to move in and do their dirty work. The Jews were victims of the Holocaust. That doesn't make them all good people, not before, during, or after the war. But of course, after the war, most who survived just wanted to go back to their peaceful lives. I believe the Sacks account of Jewish post-war concentration camps is true. But (as he firmly states), it does not make the Holocaust untrue. From the interview with Sacks cited by WordWolf: A couple more quotes And about his main character... And about Jewish backing for his book... Thanks for the information, WTH. And thanks for the link, WW.--Shaz

Spelled Dachau, chef. And thank you for your account. Oldies, you can post that the moon is made of green cheese, too. Tell me why you "know" that it isn't.... -- Shaz

In all seriousness, Oldies, maybe you shouldn't, when a link to the article would work just as well. You said I agree, and the issue of the "myth" of the six million falls. On its own -- hard, on its but-t. Regardless of the views of Victor Paul Wierwille.But would you have ever even heard of this view had it not been for The Way, Inc.? It is certainly a minority opinion, the domain of skinheads and the ignorant. Plenty of people who had no connection to Judaism or Zionist causes have documented the atrocities. Check out any public library. In the case of the author of Seed of Sarah, her experience as a Hungarian Jew in Auschwitz-Birkenau was as a teenager, and she didn't understand the relevance of half of what she saw. Her experiences were put into the larger context by others after the fact, and bore out her story as true. Kind of like our experiences in TWI, though on a less horrific scale. She recalled coming upon a burning pile of bodies at the train station, both of the dead and the insane from the transport trains. It was later verified that toward the end of the war, the death camp crematoria couldn't keep up with the large numbers coming in, so some were dealt with this way. She recalled the lines of people being split into workers and non-workers. It was later verified that all those that went to the line on the left were gassed. And so on. Really, Oldies, you should go talk with the prisoners who were there, and the soldiers from WWII who freed them. Talk to them, while there is still time left. See the pain in their faces. Touch the tattoos on their arms. Be a Doubting Thomas no longer. ;) -- Shaz

Whoa, and I cringed at the re-written hymns in the 70s. This stuff is just awful. --Shaz