Guest guest Posted December 28, 1999 Report Share Posted December 28, 1999 Steve, I'm not looking for a 'magic' bullet but a magazine of bullets... and a very firm believer in " non-random treatments " . By training and profession, I am a strict systematic " modeller " and that has lead me to enough bullets to remove most of my own symptoms, confirm the model " predictive aspect " for other treatments and leave me in control of this illness. Two days ago was an ugly day... problems with my 16 yr old.. cops at the door by 7am... since stress was the cause of CFS, I knew that I was in for bad news (and also my CFS wife).... Fortunately for both of us, we took every moment to be aggressive in handling the CFS risk... baby aspirins, concord grape juice, " painter masks " , Hale breathing breaks, lots of juices, extra packages of Imuplus etc... we knew that our blood vessels were going to be well restricted, cutting blood flow etc.. .... well today, we are both 'hurting from CFS', no major relapse for either of us... we are continuing to be in 'fire drill mode' for the CFS.. cutting short our activity periods, getting extra bed rests, extra Imuplus etc... Despite the stress .. we survived and felt in control because we knew the physical cause and knew how to correct it or reduce its impact... we are not feeling disempowered by the illness. I don't know if the model is true or not. I don't care -- it does what it is suppose to do: suggest things that helps, 'explains' what is happening (pure psychological factor)... The interesting thing is that the sole " medical " prescription is the antibiotics - a common antibiotic... everything else is via supplements (and I have an extremely liberal $0-copay prescription plan!). Although I think that I have evolved " a plan " that would help many (not all) - I look at the " plan " and realize that it is not 'practical' for the majority of patients: because of: * financial constraints * medical insurance constraints * MD constraints * " mental-fog " constraints * lack of 'supporting individuals' etc.. and a lot of my research is looking for solutions within these constraints. For example: getting an O2 rebreather depends on MANY things being just right.... :-( using a " painters-mask " may not work as well, but it is not constrained as much :-) Cheney's work and treatment tends to be unconstrained... I am trying to " pauperize " his protocols ;-) and in a way that has some benefits with low or no apparent risks... Well, I am wandering... and it's time to put the mask on and crash in front of a movie (Duddley Do-Right) .. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 1999 Report Share Posted December 28, 1999 Ken --I admire the systematic way you approach things. I am just saying until the big boys( & girls) meaning the large acedemic medical centers get involved we are not going to get very far. Look how AIDS has become a somewhat managable disease in a relatively short period of time. Right now the acedemic center are at best just beginning to address this issue. Can you or your wife identify the first infections you got prior to CFS? Lassesen wrote: > From: " Lassesen " <KenL@...> > > Steve, I'm not looking for a 'magic' bullet but a magazine of bullets... > and a very firm > believer in " non-random treatments " . By training and profession, I am a > strict > systematic " modeller " and that has lead me to enough bullets to remove most > of my > own symptoms, confirm the model " predictive aspect " for other treatments and > leave > me in control of this illness. > Two days ago was an ugly day... problems with my 16 yr old.. cops at the > door by 7am... > since stress was the cause of CFS, I knew that I was in for bad news (and > also my CFS wife).... > Fortunately for both of us, we took every moment to be aggressive in > handling the CFS risk... > baby aspirins, concord grape juice, " painter masks " , Hale breathing > breaks, lots of juices, extra packages of Imuplus > etc... we knew that our blood vessels were going to be well restricted, > cutting blood flow etc.. > ... well today, we are both 'hurting from CFS', no major relapse for either > of us... we are > continuing to be in 'fire drill mode' for the CFS.. cutting short our > activity periods, getting > extra bed rests, extra Imuplus etc... > Despite the stress .. we survived and felt in control because we knew > the physical cause > and knew how to correct it or reduce its impact... we are not feeling > disempowered by the > illness. > I don't know if the model is true or not. I don't care -- it does what > it is suppose to do: > suggest things that helps, 'explains' what is happening (pure psychological > factor)... > > The interesting thing is that the sole " medical " prescription is the > antibiotics - a common > antibiotic... everything else is via supplements (and I have an extremely > liberal $0-copay > prescription plan!). > > Although I think that I have evolved " a plan " that would help many (not > all) - I look at the " plan " > and realize that it is not 'practical' for the majority of patients: because > of: > * financial constraints > * medical insurance constraints > * MD constraints > * " mental-fog " constraints > * lack of 'supporting individuals' > etc.. and a lot of my research is looking for solutions within these > constraints. For example: > getting an O2 rebreather depends on MANY things being just right.... :-( > using a " painters-mask " may not work as well, but it is not constrained > as much :-) > > Cheney's work and treatment tends to be unconstrained... I am trying to > " pauperize " > his protocols ;-) and in a way that has some benefits with low or no > apparent risks... > > Well, I am wandering... and it's time to put the mask on and crash in > front of a movie > (Duddley Do-Right) .. > Ken > > > 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 Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 1999 Report Share Posted December 29, 1999 For my wife, the prior event appeared to be during the stress of pregnancy... (there was also some real heavy legal court case stress immediately prior to pregnancy)... For my self, the prior events were BOTH times: minor flu and high stress.... there was also a very distinctive 'dry cough' , what my 90 year old mon calls a 'stress cough' .... since I'm border line asthmatic (also a mycoplasma based illness)... it appears likely that the stress allowed the mycoplasma to thrive into CFS... So I feel very comfortable with 'mycoplasma-based CFS' for myself (realizing that the CFS symptoms can be caused by other things too!). The Asthma/allergy growth rate and the CFS growth rates are probably very related (i.e. both reflect the increase of (successful) Mycoplasma infections due to ????? diet change, environmental change, stress change????) Ken ----- Original Message ----- > Can you or your wife identify the first infections you got prior to CFS? > > Lassesen wrote: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 After weeks of educating a patient on how all this works, her lastquestion to me was, "Would it be all right if I went home and tooksome codeine?" Sometimes I'm ready to jump out of the window. wow, amazing how difficult compliance is! I run across this type of reaction all the time in my natural food store. A man last nite spent mucho time with me wanting to learn the best cooking oil to use in his new fancy deep fryer. Hello? Rick P.S. my daughter is knee deep in finals at chiropractic college but she says she is interested consulting with you for her asthma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 To be honest, the whole supplement thing is starting to irritate the hell out of me. I am probably the worst supplement junkie around, but as I've found, they are no cure for RA or any other disease and only fool you into thinking you are curing yourself and don't need help ... sure supplements are great and help with symptoms, and can make life bearable, but someone out there is making a lot of money off sick people (usually MLM people). I would love to throw all my supplements out and find something simpler - I hope the AP therapy works for me and I can give some of them up since they are causing me to go broke. I would have started the AP therapy ages ago if it weren't for the false promise of supplements to cure everything under the sun, and not to mention the silly elimination diet that Chandu talks about. Sure it might have worked for her/him, but it just put me off track about 3 years ago when I was on this list and looking for answers - I could have been getting onto AP much sooner and being fixed up properly instead of going off on wacky tangents. Thanks for listening Leonie rheumatic Re: finding a doctor Hi , How are you doing? Just curious, would you be ope3n to alternative solution? Have you tried natural supplements? The reason I'm asking is because I have a cousin who has RA and I asked her to try these 2 strong antioxidants called OPC-3 and ORAC from Isotonix line. She was a bit hesitate in the beginning, but she tried it anyway because it's all natural. She took it the first time on April 2007. She went to doctor in May 2007 and her C-reactive protein went down from 86 to 68. In August, she went back to the doctor again and this time her C-reactive protein value went down drastically to 4.4. Her doctor was surprised. My cousin looks so much healthier now, less pain, getting better everyday. Not totally cured yet, but she has a lot of energy now and looks so much healthier. Plus it's all natural, so no side effect. Those products were recommended by my friend who is a Nutraceutical Consultant. I got those products from his website: www.marketamerica.com/zingo <http://www.marketamerica.com/zingo> Ok, good luck! > > Hello- > > I have had RA since 1988, when it hit me at age 20. I have a severe > case: probably need a hip replacement now, curled hands, etc. etc. I > started the AP in 2000 or 2001, then stopped it within the year for > personal (non-medical) reasons. I'm ready to begin again and want > some opinions regarding doctor selection. > > I live in a small SE Kansas town with limited doctor choices. My > local doctor will not prescribe AP, nor will two rheumatologists I > have approached (no surprise). I think an M.D. in a nearby town who > is known to take a more wholistic approach to medicine would prescribe > the AP. > > I'm wondering, though: Because I have severe, long-standing RA, would > I be better off making a trip to see Dr. Franco in California? That > would be a convenient choice, because he does all of the testing so I > wouldn't have to find a lab, find someone to send off a blood sample, > and other logistical considerations. > > What are your opinions? Would I benefit from seeing Dr. Franco? Or > should I continue looking locally? > > I know the choice is ultimately mine. I am not looking for anyone to > make my decisions for me. I'm simply asking for your experiences and > opinions so I can use that information to make an informed decision. > > Thanks for your time! > > Quote Link to comment Share on other sites More sharing options...
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