Guest guest Posted May 30, 2006 Report Posted May 30, 2006 Blake, I would sincerely ask that you do a whole lot more research, talk to patients, etc. before posting the following link as your only resource for a very complex & controversial subject. In fact, the subject you're attempting to appear knowledgeable on is a potentially deadly disease and should not be glossed over or treated lightly. As the sole link provided, you are succumbing to and promoting a marketing-saavy dentist (one of the founders of the NICO movement) who doesn't need any more promotion. To patients: If you had the same exact condition in any other bone in your body, and you received the kind of treatment that is commonly practiced by " NICO specialists " it would be considered malpractice. And you'd probably end up with an amputation or worse. If you dig a little, you'll see that there's been an ongoing legal battle raging around NICO treatment. The battle includes charges around the CAVITAT diagnostic device and insurance fraud. Many of the NICO specialists were recently named as defendants in a racketeering lawsuit and rumor has it that there were recent FBI raids on the offices of one of the major players. I have not confirmed this rumor. Unfortunately, due to the legal actions brought by the investors in CAVITAT, at least one very fine & caring doctor (researcher/pathologist) has had his reputation tarnished simply by association. In my view, this legal battle is not merely persecution by the medical establishment. Motivations aside (which you can be sure are monetary on both sides), those of us who have been down this road, many of whom have been made sicker by inadequate " NICO " treatment, have come to believe that dentists are not capable of treating the very real and serious disorders of chronic osteomyelitis and chronic osteonecrosis of the jaw (which they call " NICO " ). Not only do we believe that the diagnostic measures used are suspect (the CAVITAT is still considered experimental & questionable re: reproducible results), just mentioning the term NICO will get you laughed out of a doctor's office. The bottom line is, " NICO " definitely doesn't help our credibility, or get us the treatment we really need, which should be performed by a team of doctors; a surgeon, an infectious disease doc, & an ENT (not a dentist!), and should include debridement, i.v. antibiotics, anticoagulant therapy and possibly hyperaric oxygen treatment. This is how all other bone infections and necrosis are correctly dealt with. penny p.s. before agreeing to allow a dentist to perform " NICO " surgery on your jaw, please do your homework and study how orthopedists treat bone infections. And locate " NICO " patients who can tell you both sides of the story. Be sure you talk to patients who are more than 6 months out of surgery. My experience has been that far more people report devastatingly bad results rather than good. > > Hi Sara, > > thanks. the dental link was supposed to be http://www.drshankland.com/osteocavitation_lesions.html > Quote
Guest guest Posted May 30, 2006 Report Posted May 30, 2006 --Penny, You seem to have a bit of a downer on Dentists! Before Evonne replies I have to say I dont think they are all the devil incarnate! Admittedly good ones are hard to find but hey that just makes the search more rewarding. Sure find one that's recommended. Dr Klinghardt recommends Dr Hussar etc. The Cavitat is found useful by some dentists. sunny thoughts, wallace - In , " penny " <pennyhoule@...> wrote: > > Blake, > > I would sincerely ask that you do a whole lot more research, talk to > patients, etc. before posting the following link as your only > resource for a very complex & controversial subject. In fact, the > subject you're attempting to appear knowledgeable on is a > potentially deadly disease and should not be glossed over or treated > lightly. As the sole link provided, you are succumbing to and > promoting a marketing-saavy dentist (one of the founders of the NICO > movement) who doesn't need any more promotion. > > To patients: If you had the same exact condition in any other bone > in your body, and you received the kind of treatment that is > commonly practiced by " NICO specialists " it would be considered > malpractice. And you'd probably end up with an amputation or worse. > > If you dig a little, you'll see that there's been an ongoing legal > battle raging around NICO treatment. The battle includes charges > around the CAVITAT diagnostic device and insurance fraud. Many of > the NICO specialists were recently named as defendants in a > racketeering lawsuit and rumor has it that there were recent FBI > raids on the offices of one of the major players. I have not > confirmed this rumor. Unfortunately, due to the legal actions > brought by the investors in CAVITAT, at least one very fine & caring > doctor (researcher/pathologist) has had his reputation tarnished > simply by association. > > In my view, this legal battle is not merely persecution by the > medical establishment. Motivations aside (which you can be sure are > monetary on both sides), those of us who have been down this road, > many of whom have been made sicker by inadequate " NICO " treatment, > have come to believe that dentists are not capable of treating the > very real and serious disorders of chronic osteomyelitis and chronic > osteonecrosis of the jaw (which they call " NICO " ). Not only do we > believe that the diagnostic measures used are suspect (the CAVITAT > is still considered experimental & questionable re: reproducible > results), just mentioning the term NICO will get you laughed out of > a doctor's office. The bottom line is, " NICO " definitely doesn't > help our credibility, or get us the treatment we really need, which > should be performed by a team of doctors; a surgeon, an infectious > disease doc, & an ENT (not a dentist!), and should include > debridement, i.v. antibiotics, anticoagulant therapy and possibly > hyperaric oxygen treatment. This is how all other bone infections > and necrosis are correctly dealt with. > > penny > > p.s. before agreeing to allow a dentist to perform " NICO " surgery on > your jaw, please do your homework and study how orthopedists treat > bone infections. And locate " NICO " patients who can tell you both > sides of the story. Be sure you talk to patients who are more than 6 > months out of surgery. My experience has been that far more people > report devastatingly bad results rather than good. > > > > > > > > Hi Sara, > > > > thanks. the dental link was supposed to be > http://www.drshankland.com/osteocavitation_lesions.html > > > Quote
Guest guest Posted May 30, 2006 Report Posted May 30, 2006 Before seeing Dr. Hussar, I'd look up a bunch of his old patients. I can give you some names. I'm getting concerned. Everybody just accepts what everyone else says. People are creating " protocols " based on nothing much more than hype and marketing. Protocols are being devised that include everything AND the kitchen sink. Please, please, please, do your homework before jumping into anything. Especially if it's something that's been around a while, like NICO. If you don't, then nobody to blame but yourself. penny > > > > > > Hi Sara, > > > > > > thanks. the dental link was supposed to be > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > Quote
Guest guest Posted May 30, 2006 Report Posted May 30, 2006 Wallace, I very much agree with you! I was diagnosed on the computron (not Cavitat). This was reinforced with ART testing. They both picked up the same areas - all 18! I was treated by a dentist who had trained with Dr. Klinghardt. I felt so much better after the treatments. Sharp pains in head were gone, heaviness in head gone, some of the brain fog gone. It was such a relief to have those infections taken care of. My dentist also used Sanum Remedies from Germany which were injected into the site of the infection. This helped tremendously. I've found that almost all protocols - whether dental or physical - are very dependent on the skill of the practitioner. Reading the Cavitat and treating cavitations certainly fall into this category. > > > > > > Hi Sara, > > > > > > thanks. the dental link was supposed to be > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 , what you say about the skill of the technician is certainly important, but not if the tools used are questionable to begin with. I have a family member who is a research scientist who worked in diagnostic imaging development for Xeorox and Dupont. He looked at the CAVITAT and said 'interesting concept, but not ready for prime time (in his opinion)'. In my understanding, not only does it use a kind of ultrasound principle which is generally used for tissue due to it's inaccuracy when bone is involved, but since gettting the image is completely dependent on how the contacts are placed, doesn't it seem it would take some extensive training to use such a device? And also, since the contacts can be placed differently, wouldn't this explain why people get very different test results from different dentists? And lastly, have you asked the dentists who purchase the CAVITAT, exactly how much training they have before using this imaging device? You should ask these questions. This is my life. A good friend of mine, a dentist himself, died from this bad treatment. By the time he realized what was really happening, the infection had spread to his brain, due to over zealous surgery. He suddenly started having seizures. He was trying to explain the seriousness of this condition at a dental conference when he had a seizure and died. You'd be very surprised to know who his " doctors " were. (Actually, they were dentists, who don't know the first thing about bacterial infections). Also, you claim your infections are " gone " and yet you're still frequenting a CFS forum. Infections in the jaw don't necessarily manifest as pain. The extreme debridement that most of these doctors do, and the lack of good follow up with serious antibiotic treatment, combined with lack of blood and oxygen in the region, just allows the infection to spread deeper into the bone. Everyone who considers such treatment needs to do their homework, as should practitioners who refer patients to them. Talk to patients who've actually been there before getting distracted by flowery promises. penny > > > > > > > > Hi Sara, > > > > > > > > thanks. the dental link was supposed to be > > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 P.S. , you mention that 18 of your teeth were dx'd as infected. I assume you had them all removed? See this is a problem, since you might have gone to another " docter " and he would have gotten a completely different result. This is exactly what's happened to friends of mine, and to dentists who used the CAVITAT and stopped, because of these kinds of discrepancies. And p.p.s. If you had 18 infected teeth, doesn't this tell you something about your susceptibility to infection? > > > > --Penny, > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 ---Well done ! A nice postive story! Ken has agreed to add the Klinghardt protoCol to his survey of protocols when he gets the chance as I know your positive results are not unique! Dentists can help us get us out of this hole! Weston Price for one! Sunny thoughts, wallace In , " marypmichel " <marypmichel@...> wrote: > > Wallace, > I very much agree with you! > I was diagnosed on the computron (not Cavitat). This was > reinforced with ART testing. They both picked up the same areas - > all 18! > I was treated by a dentist who had trained with Dr. Klinghardt. > I felt so much better after the treatments. Sharp pains in head > were gone, heaviness in head gone, some of the brain fog gone. > It was such a relief to have those infections taken care of. > My dentist also used Sanum Remedies from Germany which were > injected into the site of the infection. This helped tremendously. > > I've found that almost all protocols - whether dental or > physical - are very dependent on the skill of the practitioner. > Reading the Cavitat and treating cavitations certainly fall into > this category. > > > > > > > > > > > > > Hi Sara, > > > > > > > > thanks. the dental link was supposed to be > > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 I really didn't want to get involved in this discussion, Penny, but I personally know people who have recovered from, for instance, severe Parkinson's to the point where they were bedridden/in a wheelchair, after having infected teeth removed and mushy bone taken out. They were on antibiotics prophylactically and for a few weeks after, not years. There have been some miraculous recoveries. Thanx...I won't comment further on it but it can be done and done well without massive doses of abx. It can also be messed up by those not very well trained. > > > > > > > > > > Hi Sara, > > > > > > > > > > thanks. the dental link was supposed to be > > > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > > > > > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 Penny, I wasn't totally disagreeing with you. There is a Cavitat at the Clinic I go to. I know the dentist and wouldn't touch him or the Cavitat with a ten foot pole. All too often alternative practitioners take a weekend workshop and buy the machine and begin using it with little experience. I completely agree that one should question the doctor/dentist as much as one can (we don't always know everything ahead of time to ask about). And get referrals when possible. Also true that infections in the jaw don't always produce pain. I had pain in one area and the rest were not painful. I had long had head issues (not being able to hold my head up, sharp pains, some teeth pain, horrible brain fog, etc.) My doctor referred me to the Computron Doctor. At that point it was my only choice. I drove 45 minutes to get to her and spent the time with my head on her desk. then got home by the grace of God. She referred me to a dentist with whom I had a consultation. Wouldn't go back to him. So, found another and spoke at length with him. This was after numerous surgeries and extractions. And the regular surgeon didn't really know how infections long fester after surgery. He did the best he could, and was very good for a regular surgeon, but, it was the alternative dentist who truly understood the pathways of infections and the areas of hidden infection. Your warnings are appropriate - but, sometimes we have to go with the best we can find. Right now I'm without a doctor and can't find one. My jaw bone infections ARE gone. I have them checked regularly. Are you equating jaw bone infections with CFS????? Not so - at least for me!! I frequent this group because there are so many extremely gracious and bright people here with loads of ideas and information. I am very sick and get a lot of ideas to try. ( Your comment an this came across as very abrasive - I choose not to take it personally). > > > > > > > > > > Hi Sara, > > > > > > > > > > thanks. the dental link was supposed to be > > > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > > > > > > > > > > Quote
Guest guest Posted May 31, 2006 Report Posted May 31, 2006 Penny, I had 18 JAW BONE infections. Many teeth have been pulled but, not all. Before using this protocol I had had an eye tooth pulled years before and the regular dentist removed a huge cyst from that area twice. Now - that was the absolutely worst experience ever!!!! What other kind of results are you referring to? What discrepancies? What are you suggesting as an alternative? I'd love to know what else is " out there " . I wrote a very long time ago that I follow the pleomorphic principles. I had Sanum Remedies injected directly into my jaw bone, a few places had to be done more than once. This was a form of antibiotic and did save some of my teeth. This worked for me but it doesn't mean it's for everyone, I know. Yes, my immune system is screwed up. My CFS began with a car accident, then mold and CO hits over long periods. I think infections from previous extractions had been held in check until this assault. I also think I inherited weak teeth (Celtic background). Spent my life at the dentist for fillings (yes, mercury - mouth was filled with it). For me - this has been a multi-dimensional illness. > > > > > > --Penny, > > > > > > Quote
Guest guest Posted June 1, 2006 Report Posted June 1, 2006 All depends on your definition of " recovery " and also whether these people had CFS or FMS to begin with. I'm not saying some people don't get lucky, or have amazing self healing abilities post surgery. But the only miraculous recovery I know of writes numerous articles for one of the famous NICO docs, and from what I'm told, she's going in for yet another surgery in the next couple of weeks. Some miracle. I'm not against the concept, but I'm against being treated by unqualified people. I hate to tell you, but that's the majority. I will be happy to provide you with names of people (the ones who are still alive) and they can share their stories. penny This is not directed at you, Jill, but I'm amazed at how people would still rather shoot the messenger, than try to figure out whether the message might be real. I'm not sharing this stuff because I like to hear myself talk. I'm trying to help prevent misery and suffering. Might as well just give up, for all the good it does me. > > > > > > > > > > > > Hi Sara, > > > > > > > > > > > > thanks. the dental link was supposed to be > > > > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > > > > > > > > > > > > > > > > Quote
Guest guest Posted June 1, 2006 Report Posted June 1, 2006 I'm new here. Could you please tell me what NICO docs are? penny <pennyhoule@...> wrote: All depends on your definition of " recovery " and also whether these people had CFS or FMS to begin with. I'm not saying some people don't get lucky, or have amazing self healing abilities post surgery. But the only miraculous recovery I know of writes numerous articles for one of the famous NICO docs, and from what I'm told, she's going in for yet another surgery in the next couple of weeks. Some miracle. I'm not against the concept, but I'm against being treated by unqualified people. I hate to tell you, but that's the majority. I will be happy to provide you with names of people (the ones who are still alive) and they can share their stories. penny This is not directed at you, Jill, but I'm amazed at how people would still rather shoot the messenger, than try to figure out whether the message might be real. I'm not sharing this stuff because I like to hear myself talk. I'm trying to help prevent misery and suffering. Might as well just give up, for all the good it does me. > > > > > > > > > > > > Hi Sara, > > > > > > > > > > > > thanks. the dental link was supposed to be > > > > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > > > > > > > > > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote
Guest guest Posted June 3, 2006 Report Posted June 3, 2006 NICO - Neuralgia Inducing Cavitational Necrosis (meaning pain caused by cavitations that have become necrotic). Cavitations can be old dental extraction sites (like wisdom teeth removal) or infected root canals. This is a highly controversial subject. Don't mention it to an oral surgeon if you're wanting to be treated by him/her. Many of these docs have been cited in lawsuits, justified or not, but still damaging to the credibility of our real illness. I don't have a problem with the basic concept of NICO (it's not really new, just research osteomyelitis and chronic osteomyelitis or osteonecrosis). I DO have a problem with the way they treat it, which is nowhere close to how an Orthopedist and Infectious Disease Doc would treat Osteomyelitis or Osteonecrosis of any other bones in your body. These guys aren't trained to understand the bacteria causing the bone infection, and in my opinion often do more harm than good with surgery that is far too agressive without proper complementary and follow up treatment. A person with a bone infection in their foot, hip, or knee, will most likely be under intensive treatment for a year or more. Their INR (blood clotting) is monitored closely. They receive multiple antibiotic therapy and antibiotics are rotated. They may also receive hydrotherapy for circulation and/or hyperbaric treatments. This is how serious this illness is and how expensive it can be to treat (which is why it's being ignored by mainstream medical). Unfortunately, NICO docs treat the bone infections in your head, near your brain and sinuses and the largest nerve in your body (trigeminal, going directly to the brain), with close proximity to your spinal cord and glands and they treat for a day or two and send you on your way. Compare that to treatment for a foot infection and what do you seriously think the chances are for a great outcome? penny > > > > > > > > > > > > > > Hi Sara, > > > > > > > > > > > > > > thanks. the dental link was supposed to be > > > > > > http://www.drshankland.com/osteocavitation_lesions.html > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > > > Quote
Guest guest Posted June 4, 2006 Report Posted June 4, 2006 OK. OK. Blake step aside. I'll take the heat for this one. I'm the one who's responsible for Blake's link to Shankland's site, as I'm the one who sent it to him, and I'm the one who pointed out to him the omission of dental infections from his site. I was neglegent (Sorry about that Blake). I should have sent him additional links. I was being lazy. On the plus side, I wanted to get this issue on the radar screen. For most people in conventional society, and even in medicine and denistry, O.J. is not even in their vocabulary. They think O.J. stands for some sports hero, who murdered his wife with a knife, and got away with it. If more people started inquiring to the their doctors and dentists about O.J., then eventually the tide might begin to turn. Bad call on my part. Like Dr. Baker notes in the Pangborn/Baker book recommended by Rich, there is a vast gulf between public policy and private policy. In that gap, patients fall and die. My recommendation of the link to Shankland's site was public policy on my part. At least, there one can see pictures of O.J./ caviations. Then when a patient gets laughed out their dentist's office for bringing up the O.J. subject, they can think, " But, I saw the pictures.... There were holes in those peoples' heads.... " To correct myself, and my sincere apologies to Blake, and anyone else who may have been led astray by this, I basically agree with everything Penny has said. In fact, here is a link to the rest of the story: http://forums.delphiforms.com/jawosteo/start I will send this link to Blake at his site also. People on the Delphi Forum are generally in agreement with everything Penny has said in her post below. And if she has additional links in a similar vein, I wish she would post them, as well as send them to me privately for my files. I simply haven't seen them. Have people gotten well from O.J. under Dr. Shankland's care? I don't know? It seems to be a topic of debate that arouses controversy. Some say that he is improving his methods over time. I would say that the recent printout I got from his office was pretty up to date in most respects. Others seem less forgiving than I toward him, esp. around the issue of abx's and involving a team approach, as Penny mentioned. Personally, I am not an O.J. expert. Others would be much better consultants on this subject, it's various personalities, and possible approaches, than I. Again my apologies for supplying incomplete information to Blake. Zippy -------------------- Blake, > > > > > > > > > > I would sincerely ask that you do a whole lot more research, > > > talk > > > > to > > > > > patients, etc. before posting the following link as your > only > > > > > resource for a very complex & controversial subject. In > fact, > > > the > > > > > subject you're attempting to appear knowledgeable on is a > > > > > potentially deadly disease and should not be glossed over or > > > > treated > > > > > lightly. As the sole link provided, you are succumbing to > and > > > > > promoting a marketing-saavy dentist (one of the founders of > > the > > > > NICO > > > > > movement) who doesn't need any more promotion. > > > > > > > > > > To patients: If you had the same exact condition in any > other > > > bone > > > > > in your body, and you received the kind of treatment that is > > > > > commonly practiced by " NICO specialists " it would be > > considered > > > > > malpractice. And you'd probably end up with an amputation or > > > worse. > > > > > > > > > > If you dig a little, you'll see that there's been an ongoing > > > legal > > > > > battle raging around NICO treatment. The battle includes > > charges > > > > > around the CAVITAT diagnostic device and insurance fraud. > Many > > > of > > > > > the NICO specialists were recently named as defendants in a > > > > > racketeering lawsuit and rumor has it that there were recent > > FBI > > > > > raids on the offices of one of the major players. I have not > > > > > confirmed this rumor. Unfortunately, due to the legal > actions > > > > > brought by the investors in CAVITAT, at least one very fine > & > > > > caring > > > > > doctor (researcher/pathologist) has had his reputation > > tarnished > > > > > simply by association. > > > > > > > > > > In my view, this legal battle is not merely persecution by > the > > > > > medical establishment. Motivations aside (which you can be > > sure > > > are > > > > > monetary on both sides), those of us who have been down this > > > road, > > > > > many of whom have been made sicker by inadequate " NICO " > > > treatment, > > > > > have come to believe that dentists are not capable of > treating > > > the > > > > > very real and serious disorders of chronic osteomyelitis and > > > > chronic > > > > > osteonecrosis of the jaw (which they call " NICO " ). Not only > do > > > we > > > > > believe that the diagnostic measures used are suspect (the > > > CAVITAT > > > > > is still considered experimental & questionable re: > > reproducible > > > > > results), just mentioning the term NICO will get you laughed > > out > > > of > > > > > a doctor's office. The bottom line is, " NICO " definitely > > doesn't > > > > > help our credibility, or get us the treatment we really > need, > > > which > > > > > should be performed by a team of doctors; a surgeon, an > > > infectious > > > > > disease doc, & an ENT (not a dentist!), and should include > > > > > debridement, i.v. antibiotics, anticoagulant therapy and > > > possibly > > > > > hyperaric oxygen treatment. This is how all other bone > > > infections > > > > > and necrosis are correctly dealt with. > > > > > > > > > > penny > > > > > > > > > > p.s. before agreeing to allow a dentist to perform " NICO " > > > surgery > > > > on > > > > > your jaw, please do your homework and study how orthopedists > > > treat > > > > > bone infections. And locate " NICO " patients who can tell you > > > both > > > > > sides of the story. Be sure you talk to patients who are > more > > > than > > > > 6 > > > > > months out of surgery. My experience has been that far more > > > people > > > > > report devastatingly bad results rather than good. > > > > > > > > > > > > > > > Quote
Guest guest Posted June 4, 2006 Report Posted June 4, 2006 Zippy, thanks for the clarification. I agree with you completely that it needs to be brought onto the radar. As you know, this is an issue close to my heart as I've had one friend die and several more become completely disabled after surgeries gone wrong, not to mention so many who have gotten worse. I'd also just like to add that no matter how well written a website might be, what actually goes on in treatment can be 2 very different things. It's important to talk to patients as well. Another website that's got great marketing behind it and seems to cover so many bases on infection is this one: http://www.thearthritiscenter.com/arthritis_info.htm It's a very informative and convincing site, and I'd love for more people to see it, yet the reality is less than the hype. After extensive testing, I was told they don't know anything about treating osteomyelitis, even though it's listed on the website. A couple thousand dollars worth of tests later, I was told that I just need to improve my sleep and was charged for fibromyalgia supplements that I specifically said I didn't want. They were mailed to me anyway. However, it's a great and informative website, I'll give them that. penny <zippy890@...> wrote: > > OK. OK. Blake step aside. I'll take the heat for this one. > > > On the plus side, I wanted to get this issue on the > radar screen. For most people in conventional society, and > even in medicine and denistry, O.J. is not even in their vocabulary. > They think O.J. stands for some sports hero, who murdered his wife > with a knife, and got away with it. > > If more people started inquiring to the their doctors > and dentists about O.J., then eventually the tide might begin to > turn. Bad call on my part. Quote
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