Guest guest Posted April 7, 1999 Report Share Posted April 7, 1999 In a message dated 4/7/99 2:54:01 PM Eastern Daylight Time, rhbailey@... writes: << My question to Gail: Did they have DHEA levels tested? Did they take DHEA wthout testing? >> No, at that time, they had no idea about DHEA. This was when it was just called Chronic Epstein-Barr Virus....and that name, by the way, was a lot better than CFS! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2000 Report Share Posted September 16, 2000 Jo, Dr. Jay Goldstein uses Oxytocin. It has been helpful to some patients but is no wonder drug. I tried it a couple years ago with no positive results. It's an injectible prescription drug you can probably get from most pharmacies. Some may have to special order it. Steve Bullock oxytocin > > Does anyone use this, or know anything about it's use? Do any of the > prominent cfids docs use it? Where does one get it, etc? Any info would > be appreciated. jo > > > 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 September 17, 2000 Report Share Posted September 17, 2000 > Does anyone use this, or know anything about it's use? Do any of the > prominent cfids docs use it? Where does one get it, etc? Any info would > be appreciated. jo Dr. Flechas uses the injectable form for fibro: http://www.fibromyhelp.com/ He has an information packet you can send away for, he charges money for it though. He claims very good results. I called his office to get the packet, and he answered the phone himself and took a few minutes to talk with me. He seemed very nice. I believe that Teitelbaum and Cheney use the oral form sometimes, also. And maybe Dr. Goldstein? I believe I've heard that a fairly small percentage of patients respond to the oral form, like 20% or so. But a much higher percentage respond to the shots, according to Dr. Flechas. _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 In a message dated 9/17/00 9:26:59 PM Pacific Daylight Time, egroups writes: << From: " Holt " <catherine_holt@...> Subject: Re: oxytocin > Does anyone use this, or know anything about it's use? Do any of the > prominent cfids docs use it? Where does one get it, etc? Any info would > be appreciated. jo Dr. Flechas uses the injectable form for fibro: http://www.fibromyhelp.com/ He has an information packet you can send away for, he charges money for it though. He claims very good results. I called his office to get the packet, and he answered the phone himself and took a few minutes to talk with me. He seemed very nice. I believe that Teitelbaum and Cheney use the oral form sometimes, also. And maybe Dr. Goldstein? I believe I've heard that a fairly small percentage of patients respond to the oral form, like 20% or so. But a much higher percentage respond to the shots, according to Dr. Flechas. >> Hi, I heard about it on this list and that they compounded it at Wellness Pharmacy 1-800-227-2627 as a nose spray. My Dr called in a prescription for me and Wellness said the raw materials for oxytocin was over $200 and right now I was the only one wanting it and I couldn't get it right now. So maybe if enough people are interested in trying it maybe it would be cost effective for them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 It is used to dialite the capaleries in the brain. It can be done-sub lingual. It is GREAT for dizziness and brain foig. Re: oxytocin > Does anyone use this, or know anything about it's use? Do any of the > prominent cfids docs use it? Where does one get it, etc? Any info would > be appreciated. jo Dr. Flechas uses the injectable form for fibro: http://www.fibromyhelp.com/ He has an information packet you can send away for, he charges money for it though. He claims very good results. I called his office to get the packet, and he answered the phone himself and took a few minutes to talk with me. He seemed very nice. I believe that Teitelbaum and Cheney use the oral form sometimes, also. And maybe Dr. Goldstein? I believe I've heard that a fairly small percentage of patients respond to the oral form, like 20% or so. But a much higher percentage respond to the shots, according to Dr. Flechas. >> Hi, I heard about it on this list and that they compounded it at Wellness Pharmacy 1-800-227-2627 as a nose spray. My Dr called in a prescription for me and Wellness said the raw materials for oxytocin was over $200 and right now I was the only one wanting it and I couldn't get it right now. So maybe if enough people are interested in trying it maybe it would be cost effective for them. 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 September 5, 2002 Report Share Posted September 5, 2002 Hi Radha, Sorry about that - if it wasn't McGuff's it was Wellness Pharmacy in Birmingham, AL. (I threw the packaging away, and it was over a year ago) NDC 63323-012-10. Bottle is 10 ml (1 ml per injection), an don the bottle it says for IV or IM use. Not a compounded item, so it should be available. American Pharmaceutical Partners, Los Angeles, CA is on the bottle, so I assume that's the manufacturer. Hope this helps. Donna in NC oxytocin > hi, someone mentioned getting oxytocin from McGuff pharmacy but when i called them they said they never had that available in any form, so for those of you who have tried it how did u get it? and from where? thanks > Radha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 and all, the information about Oxytocin & Dr. De Flechas article is available at www.fibromyhelp.com I have sent the article to my doctor to see if he will allow me to try it. I was going to wait a little longer to see how was doing on the medication, but I'm going to see if my HMO will spring for it. Mr. seems to be able to acquire these medications more easily than I do from my HMO. Steve Du Pre Webpage: http://www.angelfire.com/jazz/isaiah40soaringeagle/index.html " By words the mind is winged. " Aristophanes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 , Sorry for implying that you have no trouble getting drugs. I know that you always do good research. I think I was lamenting the difficulties of dealing with HMOs, although I have been able to get Neurontin & Hydroxy B-12 and a few other things by bringing in abstracts of medical studies usually off of the Internet. Steve Du Pre Webpage: http://www.angelfire.com/jazz/isaiah40soaringeagle/index.html " By words the mind is winged. " Aristophanes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 , That was a useful comments you made when you said that Oxytocin might be a drug that have somebody feeling good to feel better. Please continue to keep us posted so that if it proves beneficial to you, I can start begging my doctor for the medication. Steve Du Pre Webpage: http://www.angelfire.com/jazz/isaiah40soaringeagle/index.html " By words the mind is winged. " Aristophanes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2002 Report Share Posted September 20, 2002 , Thanks for your update on the use of Oxytocin. I have problems with pain also due to a bad experience with antibiotics, so I was hoping for some help in that area as well. The help for cognition & sexuality would be welcome also. Regarding your sleep dysfunction, Teitelbaum says good sleep is foundational for any kind of recovery. Therefore, he suggests the use of as many as 2-6 sleep aids in order to get 7-8 hours of sleep without getting up & without feeling drugged out in the morning. Beck, the Texas superwoman, and I both use Ambien & Klonopin plus GABA. Also, I use Valerian & Lemon Balm on alternating nights; on the alternate night, I use .25 Melatonin. I also take magnesium forte at night. By the way, Neurontin wires me up, so I don't take that after eight o'clock at night. As you know, Neurontin has the side effect of more energy according to Dr. Enlander. I hope you can find a pathway to more functionality because you certainly brighten the atmosphere on this newsgroup with your wonderful sense of humor & excellent research skills. It is certainly a challenge to find purpose & focus in our lives when we are running in first gear. Steve Du Pre Webpage: http://www.angelfire.com/jazz/isaiah40soaringeagle/index.html " By words the mind is winged. " Aristophanes wrote in part: Steve D. I do find that the only time I see a notable effect of OXYTOCIN --the hormone not the pain killer-- is when I already feel pretty good. If I do not feel good take the shot does not help at all. I have also been taking Neurontin and ramping up to 5600 seems to help but I do have problems getting to sleep. Especially if I try to go to bed early. I have two different kinds of sleeping pills and usually use one or the other so as not to become dependent on one. But now I find I must often take both. But whatever the downfall of this are it is better than being bed bound. I just would not be hear any longer if I was bed-bound. Excuse me for saying this but it is the truth. I can fight a disease but if I am no longer able to fight a disease I am gone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2002 Report Share Posted September 20, 2002 Steve, Your post reminds me of a Dr. I know who tests psychiatric drugs. He says the longer he does it the more amazed he is at biodiversity. Neurontin helps me to sleep all night. Without it I'm up at 3 or 4 and can't go back to sleep. Beck Du Pre wrote: > , > Thanks for your update on the use of Oxytocin. I have problems with > pain also > due to a bad experience with antibiotics, so I was hoping for some help in > that area as well. > The help for cognition & sexuality would be welcome also. > Regarding your sleep dysfunction, Teitelbaum says good sleep is > foundational for any kind of > recovery. Therefore, he suggests the use of as many as 2-6 sleep aids in > order to get > 7-8 hours of sleep without getting up & without feeling drugged out in the > morning. > Beck, the Texas superwoman, and I both use Ambien & Klonopin plus GABA. > Also, I use Valerian & Lemon Balm on alternating nights; on the alternate > night, > I use .25 Melatonin. I also take magnesium forte at night. > By the way, Neurontin wires me up, so I don't take that > after eight o'clock at night. As you know, Neurontin has the side effect of > more energy > according to Dr. Enlander. > I hope you can find a pathway to more functionality because you > certainly brighten > the atmosphere on this newsgroup with your wonderful sense of humor & > excellent research skills. > It is certainly a challenge to find purpose & focus in our lives when we are > running in first gear. > Steve Du Pre > Webpage: http://www.angelfire.com/jazz/isaiah40soaringeagle/index.html > " By words the mind is winged. " Aristophanes > > wrote in part: > Steve D. I do find that the only time I see a notable effect of > OXYTOCIN --the hormone not the pain killer-- is when I already feel pretty > good. If I do not feel good take the shot does not help at all. I have also > been taking Neurontin and ramping up to 5600 seems to help but I do have > problems getting to sleep. Especially if I try to go to bed early. I have > two different kinds of sleeping pills and usually use one or the other so as > not to become dependent on one. But now I find I must often take both. But > whatever the downfall of this are it is better than being bed bound. I just > would not be hear any longer if I was bed-bound. Excuse me for saying this > but it is the truth. I can fight a disease but if I am no longer able to > fight a disease I am gone. > > > 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 January 16, 2003 Report Share Posted January 16, 2003 Oxytocin is a hormone secreted when a woman is breastfeeding. It produces calmness and a desire to be cuddled. Dr. Flechas has done the most research on its use. Dr. Teitelbaum also recommends it. It balances blood pressure, among other effects. Here is a link to Teitelbaum's website which gives a bit more info. If you do a websearch for oxytocin you can find more info. a https://www.endfatigue.com./home.nsf Q. 1/06/03 I am working with my local doctor and your Online Program. We want to try the Oxytocin. What is the dosage frequency and amount if used in a nasal spray? Specifically, what dose at what concentration? Your Online Program is quite comprehensive. Thanks for what must have been an enormous amount of work to make it available. A. The Oxytocin nose spray is 10 units per spray, 1 spray 1-3 x day. I am not familiar with the technical details of making it up but it can be called in to Belmar Pharmacy (800-525-9473)by your doctor and they can make it and mail it to you(and supply more info). Response: Dear Dr. Teitelbaum, Thank you so much for your response. It was in the nick of time. I had a considerable flush response to the OT injection, so we have ordered the nasal spray from Belmar. Your online program has been an invaluable help to me and my doctor. After suffering from, and for the most part, successfully managing this syndrome since 1974 I thought I had " tried it all, " but you have organized the diagnosis and treatment information in a new way for me, as well as suggesting a few new things like the OT. When trying to research and manage one's own health care in a complicated disease process like CFIDS, it is easy to not see the forest for the trees (especially with brain fog). Your program offered an organized and objective view of my condition which allowed me to rethink my options. end of post > a Carnes <pj7@...> wrote: > I would encourage you to > see if you can find a doctor prescribing oxytocin. > > a, several weeks ago we were discussing the effect that sex has on some of us, particularly the men. In the Fall, 2001 edition of the NCF's Forum, Dr Goldstein wrote a lengthy article about what brain chemicals are used for a man to get an erection and to have an orgasm. His conclusion was that neurosomatic male patients, who have NE-dependent ejaculation-related processes, commonly relapse for up to a week after having sex. He said that he has successfully used Oxytocin in CFS patients. Why were you suggesting that use it in connection with a tilt-table test? Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2005 Report Share Posted November 18, 2005 If anyone is taking Oxytocin, or has recently, could you email me? I have a couple of questions, regarding suppliers. Thanks, Katrina Hello Katrina, I have taken Oxytocin in tablet and injections. Will be happy to try and answer your questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2005 Report Share Posted November 18, 2005 I took oxytocin in pill form for about 5 years. Haven't taken it now for about 5 years. It was prescribed for me by Flechas, MD. I bought it with a prescription from a pharmacy in Colorado. I forget the name. YOu can email me if you want more information. a Carnes > > If anyone is taking Oxytocin, or has recently, could you email me? I have a couple of questions, regarding suppliers. > > Thanks, > > Katrina > > > > > Hello Katrina, > I have taken Oxytocin in tablet and injections. Will be happy to try and answer your questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 In a message dated 4/10/2006 11:13:23 P.M. Eastern Standard Time, k777thorpe@... writes: Oxytocin as in elevated around birth and just after while nursing - does anyone remember that burst of cleaning right before the baby's born? - That's some mighty interesting stuff there! I've never heard of the study. Was anything ever looked into further on this?? What was the doctors name, do you remember? LT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 , I would like to know more too! Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Hi , I hadn't heard anything about this study but it sounds fascinating... where did you hear about it? If it has been discussed here already, I must have missed it. I was enjoying calm times (and a new baby!) at my house and was absent for a while. Thanks, le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 Oxytocin is a great and safe hormone and you can take it for years. AGain, the only problem would be if you are also low on DHEA, in which case you would want to supplement both. a Carnes > > I'll address your questions as well as possible. My memory isn't > doing very well so I didn't absorb everything the doctor said. I've > had two miscarriages on both sides of a successful pregnancy. He > said that he thinks something happens when a pregnancy doesn't get > to run its course. He said that at one time it was standard to give > a woman oxytocin after a miscarriage. That was stopped because it > was determined it didn't help with what it was being administered > for. However, it was helping something. Given that part of my post > partum depression involved a drying up of milk, inability to sleep, > rapid weight loss, and depressive anxiety, he thinks there's an > oxytocin connection. Yesterday I was feeling a bit like that again. > He saw my agitated state and deep breathing and sighing and thought > of oxytocin. I'm not thrilled with doing injections, but I'm curious > if it will help. > > Is it something that I do short term, or indefinately? I don't want > to start a hormone and then have to wean off. I'm on Armour Thyroid > too, and hope to one day be able to wean off that. The doc said it's > smoke from the same fire. > > Sorry I can't be more detailed. -Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2010 Report Share Posted May 10, 2010 Hi, Went to visit my DAN today and she recommended the oxytocing nasal spray to try on my son when we are ready. Anyone tried this? Any thing positive or negative? Thanks, Arthi -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2010 Report Share Posted May 10, 2010 Thanks for the reply. What benefits have you seen? On Mon, May 10, 2010 at 5:32 PM, TRACEE ZEVAN <@...> wrote: > > > We use it for our son, and it's been great. > > Sent from my iPhone > > > On May 10, 2010, at 4:07 PM, Arthi Nagaraj <arthi.nagaraj@...<arthi.nagaraj%40gmail.com>> > wrote: > > Hi, > > Went to visit my DAN today and she recommended the oxytocing nasal spray to > try on my son when we are ready. Anyone tried this? Any thing positive or > negative? > > Thanks, > Arthi > > -- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2010 Report Share Posted May 10, 2010 > > Hi, > > Went to visit my DAN today and she recommended the oxytocing nasal spray to > try on my son when we are ready. Anyone tried this? Any thing positive or > negative? > > Thanks, > Arthi > > -- > > Quote Link to comment Share on other sites More sharing options...
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