Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 I just wanted to check up on those doing Kane's protocol to find out how they are doing in the long-term. I have recently moved and finally hooked up with the one CFIDS doctor around, and the Kane protocol (out of the ones I presented this time -- Marshall and Kane) was the only one he was really receptive to, but he feels I'm not strong enough to undertake it at this time. However, this doctor is very fond of IVs, and capable of administering the Kane protocol exactly. So, any updates would be appreciated. And I'd also love to know if any pre-prep was involved for those who have done this protocol. (the original) Peggy (who noticed there is now another Peggy on the list!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi Peggy, I did around 15 rounds of PC push alone and around 7 rounds with PC push and glutathione. No improvement in my symptoms following that. I also did all her supplements and diet recommendations. Again, no symptom improvement. take care Gayathri. > > I just wanted to check up on those doing Kane's protocol to find out > > how they are doing in the long-term. > > > > Peggy, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi, Peggy. Sounds as though quite a few people did not find the Kane protocol helpful. That's unfortunate. I just want to re-emphasize the view that the total PWC population is very heterogeneous, and is composed of a fairly large number of subsets. I think it's very valuable for PWCs to be able to exchange experiences with different treatments with other PWCs. However, I think it's a good idea to try to ascertain how similar someone else's case is to one's own before deciding whether a treatment that did or did not work for another PWC is likely to have the same result in one's own case. I think the Kane protocol is most likely to work for someone who has a lot of fat-soluble toxins stored in their body. In view of your history of exposure to toxic substances, Peggy, I think it would be worthwhile for you to give this protocol serious consideration, even though several people did not find it helpful in their own cases. I think the Marshall protocol is most likely to help those who have bacterial infections as a major issue, such as those with positive Lyme tests and those who have experienced a response of some sort to antibiotic treatment in the past. And of course, there are vitamin D metabolite tests that can be performed to see whether the mechanism Dr. Marshall has described is going on in one's own case. I don't think this protocol will work for all PWCs, nor did I think the Kane protocol would, as we have been hearing. Rich > I just wanted to check up on those doing Kane's protocol to find out > how they are doing in the long-term. I have recently moved and finally > hooked up with the one CFIDS doctor around, and the Kane protocol (out of the ones > I presented this time -- Marshall and Kane) was the only one he was really > receptive to, but he feels I'm not strong enough to undertake it at this time. > However, this doctor is very fond of IVs, and capable of administering the Kane > protocol exactly. So, any updates would be appreciated. And I'd also love > to know if any pre-prep was involved for those who have done this protocol. > > (the original) Peggy (who noticed there is now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Peggy, The Kane protocol helped me a lot, and permanently I believe. I was very neurotoxic, as demonstrated by symptoms and also the VCS test. Re: Kane Protocol Hi, Peggy. Sounds as though quite a few people did not find the Kane protocol helpful. That's unfortunate. I just want to re-emphasize the view that the total PWC population is very heterogeneous, and is composed of a fairly large number of subsets. I think it's very valuable for PWCs to be able to exchange experiences with different treatments with other PWCs. However, I think it's a good idea to try to ascertain how similar someone else's case is to one's own before deciding whether a treatment that did or did not work for another PWC is likely to have the same result in one's own case. I think the Kane protocol is most likely to work for someone who has a lot of fat-soluble toxins stored in their body. In view of your history of exposure to toxic substances, Peggy, I think it would be worthwhile for you to give this protocol serious consideration, even though several people did not find it helpful in their own cases. I think the Marshall protocol is most likely to help those who have bacterial infections as a major issue, such as those with positive Lyme tests and those who have experienced a response of some sort to antibiotic treatment in the past. And of course, there are vitamin D metabolite tests that can be performed to see whether the mechanism Dr. Marshall has described is going on in one's own case. I don't think this protocol will work for all PWCs, nor did I think the Kane protocol would, as we have been hearing. Rich > I just wanted to check up on those doing Kane's protocol to find out > how they are doing in the long-term. I have recently moved and finally > hooked up with the one CFIDS doctor around, and the Kane protocol (out of the ones > I presented this time -- Marshall and Kane) was the only one he was really > receptive to, but he feels I'm not strong enough to undertake it at this time. > However, this doctor is very fond of IVs, and capable of administering the Kane > protocol exactly. So, any updates would be appreciated. And I'd also love > to know if any pre-prep was involved for those who have done this protocol. > > (the original) Peggy (who noticed there is now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 Hi A LLMD told me he tried a few patients on the Kane protocol and the response was very mixed. One woman who had mild Lyme symptoms did the oral protocol and got some improvement, a Lou Gherigs patient did the IV and improved a little and another man who had Lyme, was managing to work but was made much worse by doing the protocol and lost his job! As complex as the science behind it is they obviously haven't figured it out completely. BW Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 The Detoxx Book Physicians Guide (by Kane, and two other doctors) gives detailed information on oral protocols as well as the IV protocols. It is my opinion that all of their protocols are on very sound scientific footing -- from detoxing the sludge, toxins, and neurotoxins from the liver, to lipid replacement that brings about cell repair, to butyrate, to their other supplement recommendations in the book. Just my opinion here (but from experience I have had with my own health), there may be people who try some of the Kane protocols who have overgrowth of yeast and other problems that may take more time and more consideration than perhaps someone who has had yeast eradication, stayed on a healthy diet, etc. As the protocols for yeast eradication begin to work, we can feel horribly bad just from it. Sometimes we tend to blame a lack of progress on a protocol we are trying, rather than on our complicated personal health problems which may result in herxing before we get better. In the book, they even warn patients about the use of Heparin if there is yeast overgrowth, saying it can cause toxic shock. I believe the phosphatidylcholine (PC), balanced oils, and butyrate should have only positive results. If anyone is serious about following their detoxx program, I highly recommend purchasing the book for physicians, as it is very specific. Thankfully, I ordered the book. I had been on phosphatidylserine (PS) from Jan 2004 to April 2004 to help with brain circulation, and only began feeling worse. I assumed it was just my condition. I had ordered the book and had it only two days when my blood had become so thick, a nurse had difficulty drawing blood for tests. In the book two days later, I read a whole page on PS where it warned that it could cause coagulation (instead of the normal help it's supposed to give)in neurological and immune disorder patients. I learned this has to do with antiphospholipid antibody syndrome, which I apparently have and did not know. I had researced PS thoroughly and knew about its praise for several years before I used it. How fortunate for me that Kane, et al knew about this problem and put it in their book, or I probably never would have learned about its down side. bg > Thanx for the Kane protocol report. I think like all therapies, > initial " pilot " studies often give one inflated expectations. It > probably works in some cases. But it seemed very expensive and they > seemed in it at least partly for the $--and it seemed to me you could > do low tech versions of it, for instance, using ayurvedic methods or > raw fats etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2004 Report Share Posted September 19, 2004 This is an astute point about the Kane protocol: <<Just my opinion here (but from experience I have had with my own health), there may be people who try some of the Kane protocols who have overgrowth of yeast and other problems that may take more time and more consideration than perhaps someone who has had yeast eradication, stayed on a healthy diet, etc. As the protocols for yeast eradication begin to work, we can feel horribly bad just from it. >> In the past, every single protocol I have tried that was geared toward any kind of detox made me much, much sicker. For example, when I first tried undenatured whey, I got much sicker. When I had my mercury fillings taken out, even using a Huggins-trained mercury-removal dentist who did everything by the book, I got much sicker. Continuing on the whey at that time just made me sicker and sicker, and I never really climbed up from it. I take this as a sign that I'm highly toxic and too impatient, rather than someone who wouldn't benefit from these protocols at another time. However, I think it's important to distinguish this reaction (a toxic-dumping reaction that a very sick patient can't handle) from a true Herx. At the time I started the whey, which was many years ago but I was on this list, people were talking a lot about herxing but it seemed ill-defined, and many people were talking about herxing in relation to whey. I thought maybe I was just herxing but, in fact, I was most likely removing lipophilic toxins from my system too hastily and when I was far too ill. I was just not physically strong enough. The doctor I just consulted with about the Kane protocol said I wasn't ready for it yet, that I'm too sick, and I think he's right, but I do agree with Rich that it's very appropriate for my case (and maybe for others here too -- maybe in other cases it's a timing issue). I'm no longer jumping into anything that involves detox without extreme preparation. After many years of yeast eradication, correcting bowel issues through Dr. Corsello's bowel cleansing protocol (to get rid of chronic constipation), antifungal drugs, nutritional building through Sparx and other supplements, slowly-administerd Metal-Free, Isoprinosine and other immune-correcting substances (though I'm not convinced the Iso did much), etc., I am able to take undenatured whey without getting sicker. But I'm still extremely ill. I think for people who have been sick with CFIDS for a very long time, and have very intractable cases, a pyramid approach really is critical, and things can't be done out of order or without an incredibly astute physician. I have never been well enough to move or travel to a place with a physician who knows much more about CFIDS than I do. I think this current doctor I have found, after my recent move, at least has some handle on detox issues since he's an environmental medicine doc who treats CFIDS as well as other conditions. It must be frustrating for Kane and others that so many of us have to do these protocols when a) our brains are too impaired to fully wrap around them, and our doctors don't generally have a comprehensive-enough understanding of the illness to administer the protocols properly or tinker with bad results. Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2004 Report Share Posted September 19, 2004 > This is an astute point about the Kane protocol: > > <<Just my opinion here (but from experience I have had with my own > health), there may be people who try some of the Kane protocols who > have overgrowth of yeast and other problems that may take more time > and more consideration than perhaps someone who has had yeast > eradication, stayed on a healthy diet, etc. As the protocols for > yeast eradication begin to work, we can feel horribly bad just from > it. >> > > Maybe so. Or maybe it's just like any protocol and works for at most about 1/3 patients, which isn't bad--except this protocol is so ridiculously expensive, much more than it needs to be. Sorry to be so cynical, but that's how I see it--they even charge more for the oral PC--which you can get from American Lecithin Co for less, esp if your doctor orders it and doesn't mark up the price. They charge too much to teach other doctors, etc. It's a very simple protocol. IMO people should try oral cleansing first with raw fats and or ayurvedic approach...much cheaper...but I " m only one person with an opinion and I never did try raw fats myself EXCEPT goat milk for which I am getting ac raving again and going to order some more raw goats milk and kefir soon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 > I just wanted to check up on those doing Kane's protocol to find out how they are doing in the long-term. Hi Peggy: I was on the Kane Protocol for several months, and ended up with massive blood clotting, and heart events that required a several visits to the ER, and to a Cardiologist. I was removing 1 1/2 " clots from my Central Venous Line Daily. This lead to a Staph Infection and removal of my Hickman. I did see initial improvement, and it did seem to rebalance my liver. However, I am not sure it was the Essentiale N (PC) or the IV Glutathione. None the less, the risk of triggering of hypercoagulabilty, and/or Antiphospholipid Antibody Syndrome (APS), and subsequent heart problems was not disclosed. And when I put 2+2 together on my own, all I got from Kane's office was a bunch of denial. I am very dissapointed that she failed to step up to the plate on this issue. With very little research I found out our patient population (CFIDS and/or Lyme) is at high risk for both hypercoagulability and/or APS. Something like 93% of us have APS. The Concept behind the Kane Protocol is sound, and theoretically should work. However, the reality for our patient population is ... once again ... the total picture of our chemistry malfunctions is not being taken into consideration. I found the risk was not worth the benefit. I had to go on anticoagulants for several months in order to settle things down, and dissolve the clots. The heart pain has decreased in severity, but still remains. I never had any problems with my heart until I started the Kane Protocol. I have, however, continued with just straight IV Glutathione on an as need basis for MCS and when I feel my Liver is acting up. It seems to do the trick, without causing clotting issues. Ahhh the life of a guinea pig. Sincerely, is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 This is of GREAT concern. One of my concerns was simply that in withdrawing the blood and mixing it with the PC, they are allowing the blood time to clot--as blood does very quickly outside the body. There was no filtering system provided as in dialysis or other procedures, admittedly the blood in being " rolled " to make the solution more liquid, is not outside the body for a long time, but long enough for clots to form. I'm very upset to hear this and sorry you went through this. As I said it was an initial concern of mine which I posted on several lists and NOBODY ever addressed it, and clearly Kane et al did not either. > > I just wanted to check up on those doing Kane's protocol > to find out how they are doing in the long-term. > > Hi Peggy: > > I was on the Kane Protocol for several months, and ended up with > massive blood clotting, and heart events that required a several > visits to the ER, and to a Cardiologist. > > I was removing 1 1/2 " clots from my Central Venous Line Daily. This > lead to a Staph Infection and removal of my Hickman. > > I did see initial improvement, and it did seem to rebalance my > liver. However, I am not sure it was the Essentiale N (PC) or the IV > Glutathione. > > None the less, the risk of triggering of hypercoagulabilty, and/or > Antiphospholipid Antibody Syndrome (APS), and subsequent heart > problems was not disclosed. And when I put 2+2 together on my own, > all I got from Kane's office was a bunch of denial. I am very > dissapointed that she failed to step up to the plate on this issue. > > With very little research I found out our patient population (CFIDS > and/or Lyme) is at high risk for both hypercoagulability and/or APS. > Something like 93% of us have APS. > > The Concept behind the Kane Protocol is sound, and theoretically > should work. > > However, the reality for our patient population is ... once again ... > the total picture of our chemistry malfunctions is not being taken > into consideration. > > I found the risk was not worth the benefit. I had to go on > anticoagulants for several months in order to settle things down, and > dissolve the clots. The heart pain has decreased in severity, but > still remains. I never had any problems with my heart until I > started the Kane Protocol. > > I have, however, continued with just straight IV Glutathione on an as > need basis for MCS and when I feel my Liver is acting up. It seems > to do the trick, without causing clotting issues. > > Ahhh the life of a guinea pig. > > Sincerely, > is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 If you want to E-mail me off line I can share more about her treatments. Blessingsx10@... In EOHarm , " Hooker " <brian@...> wrote: > > Speaking of Pat, has anyone tried the Kane protocol with > their child? We're considering it but would love additional input. > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 We have done about 25 IV's of the Kane protocol and love it! We have seen a lot of cognitive gains and it hs helped us get better pulls of metals with our IV's of EDTA/DMPS. We do the PC push right before he gets his chelation IV. We do them every week. --- Hooker <brian@...> wrote: > Speaking of Pat, has anyone tried the Kane > protocol with > their child? We're considering it but would love > additional input. > Thanks! > > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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