Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Did you try a lot of rest with psychoterapy and or relaxation/meditation. what is your main discomfort? (mental, brain fog, anxiety, depresion, bad sleep) or physical or both. Steve, i hope sincerely you will get a little better. How is your diet, your supplemnts...? Are you at an early stage of the illness?if it is so the CMV needs a lot of rest if it is active, and slowly you will go out of the acute phase. Elena Comfort > I have tried every thing from Valcyte to ABXs and nothing works. I am wonder > what makes people more comfortable especially when they are really sick. Is > methadone something that helps. I would rather be a little stoned that feel > sick all the time. I still get around pretty good -- I have scooter but I > have never used it. I thinks we should focus more on comfort. We have a > poorly understood and as yet incurable disease. So why not seek relief from > the more negative aspects of this dd. There must be some drugs out there > that can turn a nightmare of a day in to a pleasant -- if not zombie-like > dream. I have found Neurontin and Aricept (beware of side effects) to help a > little. B12 shot really do nothing for me. I think we need stronger drugs to > address the flu-like discomfort of this dd just like folks with pain > syndrome need stronger med. > > What are people getting and where are they getting it? > Steve > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Hi, I have tried many drugs, and found myself to be too sensitive to take them long term or even short. I have been able to tolerate Valium for sleep, but as far as drugs that's it. I do take an antigen, mixed or titrated for me by my Doctors office. He treats environmentally Ill , and people with allergies, and the rest of the chronic but hard to treat conditions.(us) I have found great relief by injecting this antigen , titrated for me called MRV. or Multiple Respitory Vaccine. It makes the worst systems go away..amazing..I have read it makes the body go to the TH1 side rather then the TH2 excessive imbalance. I added Kutapression in very small amounts every 4th day also to help with the viruses that are active , I contracted HHV6 5 1/2 years ago and found this to be of great help. I only need a very small amount to get the job done for me so it's cost effective. I use also B12 and complex together, and this has helped my nervous system, and possibly the toxins problem. I want to look into injecting Glutathion, but have been told it is painful, I was going to try some w/ procaine at my Dr.s office to see if this would work since I can't tolerate any of the immune whey products, but hoped this would help with detox..I'll post if it works.. If you want the name of my Dr. it's . Buscher M.D. Bellevue, Wa. Carol Comfort > I have tried every thing from Valcyte to ABXs and nothing works. I am wonder > what makes people more comfortable especially when they are really sick. Is > methadone something that helps. I would rather be a little stoned that feel > sick all the time. I still get around pretty good -- I have scooter but I > have never used it. I thinks we should focus more on comfort. We have a > poorly understood and as yet incurable disease. So why not seek relief from > the more negative aspects of this dd. There must be some drugs out there > that can turn a nightmare of a day in to a pleasant -- if not zombie-like > dream. I have found Neurontin and Aricept (beware of side effects) to help a > little. B12 shot really do nothing for me. I think we need stronger drugs to > address the flu-like discomfort of this dd just like folks with pain > syndrome need stronger med. > > What are people getting and where are they getting it? > Steve > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 > I am wondering what makes people more comfortable especially when > they are really sick. Speaking personally, I derive huge comfort from listening to tapes that lift me out of the mundane perspective on life and orient me to the larger reality. Cassette tapes can be ordered (totally free of charge) through this website: http://www.prestoncitybible.org/decisions.htm - E.B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Hi EB! Thanks for sharing that link with us. I would like to share the Christian music links that have been such a blessing to me. If your computer has audio capabilities, this music can be accessed through the Internet. This deep worship music has been such a balm to my soul when I have been so very ill. Perhaps other Christians will also be blessed by this music. http://www.pbnradio.com/ http://www.worshipradio.com/ (sister site) God bless, Trudy Message: 11 Date: Fri, 03 Aug 2001 19:47:12 -0000 From: re001@... Subject: Re: Comfort > I am wondering what makes people more comfortable especially when > they are really sick. Speaking personally, I derive huge comfort from listening to tapes that lift me out of the mundane perspective on life and orient me to the larger reality. Cassette tapes can be ordered (totally free of charge) through this website: http://www.prestoncitybible.org/decisions.htm - E.B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Trudy, thanks for the link. - E.B. > http://www.prestoncitybible.org/decisions.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Steve, I have told you several times that I know of a doc that has a patent on buprenorphine, a narcotic, for CFS and FM. He has CFS and noticed great improvement when he had to take vicodin for a back problem. There is another member of this list who uses methadone, I believe 10 mg./day. So yes, try whatever your doc will give you. Even if you are not in pain, the theory is that the narcotics block the effects of the cytokines which are what cause the flu-like symptoms. When one get the flu, it isn't the virus that causes discomfort, it is the body's immune system reaction that causes the fever, lethargy and pain. So, if in CFS one is getting all the bad effects from the cytokines, anything that would help negate the effect should help without causing harm. Mike (Have to agree with your music statement) > As for me I hate nothing more than Christian music (black gospel and old > blue grass and classic choral music are exception) But my god listen to > Christian rock is the closest thing to hell I can imagine. WHAT DRUG DO > PEOPLE TAKE FOR PURE COMFORT? > > IS THERE ANYTHING THAT MAKE THE FLU-LIKE SYMPTOM LESS SEVERE. WHAT ABOUT > NARCOTICS, WHAT ABOUT METHADONE? > > STEVE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi EB! I went to your link's home page and noticed that they have an audio section. Unfortunately, I was not able to access any of the links. (I regret that I am very computer illiterate, so I will have to get one of my friends to help me out. Can you believe it, after being on the Internet for a couple of years now, just a few weeks ago I finally learned how to use the address book? ...what a marvelous invention! ;-) LOL I had always wanted to take an Internet course, but with my illness was never able to make such a commitment.) http://www.prestoncitybible.org/index.htm Anyway, in thinking about what you wrote about how good preaching can be such a comfort, I was reminded of Ray Comfort's teaching. (Yes, his surname really is " Comfort " ! :-) If you are not familiar with his teaching, you may also find it a blessing. See: http://www.raycomfort.com/ (homepage) http://www.raycomfort.com/realaudio/ram/hbks.ram (Hell's Best Kept Secret) http://www.raycomfort.com/listenwatch/index.html (other sermons) Yours because He lives, Trudy Message: 8 Date: Sat, 04 Aug 2001 14:05:30 -0000 From: re001@... Subject: Re: Comfort Trudy, thanks for the link. - E.B. > http://www.prestoncitybible.org/decisions.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 any narcotic helps me, methadone, vicidone.the flu symptoms go ASTA LA VISTA BABY. If I had my way I'd have a stronger narc. on hand for emergencies. Comfort > As for me I hate nothing more than Christian music (black gospel and old > blue grass and classic choral music are exception) But my god listen to > Christian rock is the closest thing to hell I can imagine. WHAT DRUG DO > PEOPLE TAKE FOR PURE COMFORT? > > IS THERE ANYTHING THAT MAKE THE FLU-LIKE SYMPTOM LESS SEVERE. WHAT ABOUT > NARCOTICS, WHAT ABOUT METHADONE? > > STEVE > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi Steve M., If you are not a Christian, I certainly can understand why you would hate Christian music. Please note that I sent my links for Christians. As for style of music, the links that I sent were for contemporary Christian music and not Christian rock, as you tried to suggest. I would be unable to assist you with a recommendation for medication that would comfort, as I personally try to avoid these type of drugs. Kind regards, Trudy From: " " <moores@m...> Date: Sat Aug 4, 2001 8:12 pm Subject: Comfort As for me I hate nothing more than Christian music (black gospel and old blue grass and classic choral music are exception) But my god listen to Christian rock is the closest thing to hell I can imagine. WHAT DRUG DO PEOPLE TAKE FOR PURE COMFORT? IS THERE ANYTHING THAT MAKE THE FLU-LIKE SYMPTOM LESS SEVERE. WHAT ABOUT NARCOTICS, WHAT ABOUT METHADONE? STEVE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Steve, A while ago on some list I was on there was a dentist from Atlanta (I think) who was (he claimed--I spoke with him and he sounded a bit flaky, but then we all can sometimes in this flaky world) trying to get some research going on a hypothesis he and another person had relating codeine to the reduction of cytokines, which is why he felt it helped flu symptoms, and not via its pain killing mechanism. I lost touch with him utterly and don't even have his name and suspect it would be hard to research. But interestingly, many pain killers kill pain but don't kill flu-like aching, and codeine does. Or maybe all opiates do. The question is might this have something to do with a cytokine effect and not just affecting brain pain centers usually touched by pain meds. There are some nurses who recently spoke somewhere that I saw who were into the use of narcotics for palliation (your " comfort " ) and not just for terminal patient pain. There's a big pain conference in September on the East Coast. I have a brochure somewhere . I did give it to a doctor of mine so could retrieve a copy from her if I don't find it. I think those nurses are speaking there. The problem of course is two: one, finding a dr to prescribe it; and two being a patient who won't keep increasing the dose, which is what they worry about. But some drs, even if you find a dose that you can stay with, that allows enuf control for you to function enuf to get by on and only take an occasional extra for special circumstances, won't write for it. As if it's written in stone that above a certain dose you (the doc) is writing your death warrant (or theirs!) People do abuse opiates (abuse meaning many things but here I'm using it to refer to slowly increasing the amount per day because you want more and more relief, which is understandable but ultimately leads to an impossible situation where you would end up taking a huge dose if you could tolerate it, although some cannot even if it helps, which acts as a natural governor on increase); but many do not abuse in this way, but the medical profession ain't got it together on this issue (among a few others.) It takes lots of close contact and trust between dr and patient and the medical profession can't give that to us anymore without taking cuts in their incomes or facing down insurance companies, like the labor movement once did with their big bosses. This is why when people say that medicine is not socially determined I find it quite impossible. I'd even be curious whether there wasn't (can't know what) some non intellectual but subtle nonscientific reasons for Moorkens missing the obvious on the mag depletion issue. Judith Wisdom On Sat, 4 Aug 2001 21:12:20 -0500 " " <moores@...> writes: As for me I hate nothing more than Christian music (black gospel and old blue grass and classic choral music are exception) But my god listen to Christian rock is the closest thing to hell I can imagine. WHAT DRUG DO PEOPLE TAKE FOR PURE COMFORT? IS THERE ANYTHING THAT MAKE THE FLU-LIKE SYMPTOM LESS SEVERE. WHAT ABOUT NARCOTICS, WHAT ABOUT METHADONE? STEVE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 If cytokines cause the flu-like malaise (inflammation, fever, etc) why not to take aspirin just a question, forgive me if it is too " naive " Elena Re: Comfort > Steve, I have told you several times that I know of a doc that has > a patent on buprenorphine, a narcotic, for CFS and FM. He has CFS > and noticed great improvement when he had to take vicodin for a > back problem. There is another member of this list who uses > methadone, I believe 10 mg./day. So yes, try whatever your doc will > give you. > > Even if you are not in pain, the theory is that the narcotics block > the effects of the cytokines which are what cause the flu-like > symptoms. When one get the flu, it isn't the virus that causes > discomfort, it is the body's immune system reaction that causes > the fever, lethargy and pain. So, if in CFS one is getting all the > bad effects from the cytokines, anything that would help negate the > effect should help without causing harm. > > Mike (Have to agree with your music statement) > > > > > As for me I hate nothing more than Christian music (black gospel > and old > > blue grass and classic choral music are exception) But my god > listen to > > Christian rock is the closest thing to hell I can imagine. WHAT > DRUG DO > > PEOPLE TAKE FOR PURE COMFORT? > > > > IS THERE ANYTHING THAT MAKE THE FLU-LIKE SYMPTOM LESS SEVERE. WHAT > ABOUT > > NARCOTICS, WHAT ABOUT METHADONE? > > > > STEVE > > > > > 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 August 8, 2001 Report Share Posted August 8, 2001 Elena, That is exactly what I did, take aspirin and tylenol, to get through the " flu-like " phase. But you don't want to take too much because they are toxic to your liver, and the more work it has to do to detoxify them, the less it can fight other things. So your immune system suffers. But nobody can stand being completely miserable, so I think it is a balancing act. Doris ---- If cytokines cause the flu-like malaise (inflammation, fever, etc) why not to take aspirin just a question, forgive me if it is too " naive " Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Aspirin is a completely different kind of pain killer than a narcotic. Without going into too much detail, narcotics attach to the receptors that cytokines normally would, thereby blocking the effects. Aspirin doesn't. Mike > If cytokines cause the flu-like malaise (inflammation, fever, etc) why not > to take aspirin > just a question, forgive me if it is too " naive " > Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Your thoughts are lovely ,try to never lose them as you struggle daily. I know that because of RA I am a changed person and I like to think I have become nicer and more compassionate. My RA now defines me as a person. Although there are many bad days,intolerable pain and many disappointments,this same disease has brought me a new career in Patient Partners in Arthritis. Here I have met and became close friends with people I would never have met in my previous busy corporate life. I have had the opportunity to babysit two of my grandsons until they grew up. Never having stayed home with my own two sons,RA offered me a second chance to become close to these wonderful boys and all their friends because of the time I had to stay at home. My life is so full now,I don't know if I would ever want to go back to those days before RA. Just my thoughts today Hugs June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 June, what a beautiful thought. I needed to hear that today. Thanks for sharing. Hugs, Carol in FL [ ] Comfort Your thoughts are lovely ,try to never lose them as you struggle daily. I know that because of RA I am a changed person and I like to think I have become nicer and more compassionate. My RA now defines me as a person. Although there are many bad days,intolerable pain and many disappointments,this same disease has brought me a new career in Patient Partners in Arthritis. Here I have met and became close friends with people I would never have met in my previous busy corporate life. I have had the opportunity to babysit two of my grandsons until they grew up. Never having stayed home with my own two sons,RA offered me a second chance to become close to these wonderful boys and all their friends because of the time I had to stay at home. My life is so full now,I don't know if I would ever want to go back to those days before RA. Just my thoughts today Hugs June Quote Link to comment Share on other sites More sharing options...
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