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Quote from: B_Jim on 10/08/2009 07:53:58JonJen99 : Welcome, thanks for rodiola rosea.Are you a Pois sufferer ? Can you give more details ?Jim, I've lurked here for some time. I don't feel comfortable discussing my condition, but yes -- I've had pois since college, and that was MANY years ago. I've had some relief from pharma, but mostly from herbs.
JonJen99 : Welcome, thanks for rodiola rosea.Are you a Pois sufferer ? Can you give more details ?
Quote from: JonJen99 on 10/08/2009 17:02:14Quote from: B_Jim on 10/08/2009 07:53:58JonJen99 : Welcome, thanks for rodiola rosea.Are you a Pois sufferer ? Can you give more details ?Jim, I've lurked here for some time. I don't feel comfortable discussing my condition, but yes -- I've had pois since college, and that was MANY years ago. I've had some relief from pharma, but mostly from herbs.Can you say which herbs?
To demografxI was just trying to share information and no intention of spam or any product advertisement. That is why I said 'do our own research' and 'read' in my original post. I had reasonable results from one of his products so that's why I mentioned it in my post. Since every body's physiology is different so for some they may work and for some it wont.. I still have my POIS issues so I am still doing research and that's how I landed up in this forum. To be honest I forgot to search this site thoroughly before posting and never realized Lin was discussed here...
Quote from: Paul. on 09/08/2009 20:09:58I always had the impression that New Theories was not so much a place for New Theories, but more of a place to house the nutters and way out there people. Hey, Paul, I wish to protest, "foul"! My little "nutter group and way out people" has been going strong for over 2 years now, and has attracted interest from Harvard (biophysics), and other dead-serious researchers and institutions (no, not that kind) worldwide. And it's helped a number of people with suicidal ideation, and depression, and has also given great hope to hundreds of sufferers that all the new theories discussed will some day become concrete treatment reality (it has for me already).
I always had the impression that New Theories was not so much a place for New Theories, but more of a place to house the nutters and way out there people.
Demo, with respect, you are barking up the wrong tree. My comment was said in jest, although there is truth in it.Take a look around "new theories", how many of the posts are new theories? Not many, this is a dumping ground for the wackier topics and wackier posters. Most of them know it, but are happy to be able to post and be left alone.At no point have I mentioned your pois topic, so an apology would be nice.
laurac, but the genesis and/or triggers for POIS vs. fibromyalgia are different, aren't they? And the length of time in/out of the system (typically, POIS lasts a few days and then nonsymptomatic normalcy returns). Aren't fibromyalgia symptoms always there?Or maybe orgasm, in some people, triggers a "temporary fibromyalgia"?This discussion reminds me of my post about hypogonadism, i.e., is that what I have or POIS?http://www.thenakedscientists.com/forum/index.php?topic=6576.msg249794#msg249794 [nofollow]
I hope our probiotics testers will confirm effect on Pois soon
Quote from: B_Jim on 13/08/2009 12:10:28I hope our probiotics testers will confirm effect on Pois soon Me, too. My retired-psychiatrist friend, struggling with strange digestive symptoms, suggested probiotics to me, but my GI doc completely disagrees with it (for me).
I also notice even after healing. When I dont sleep enough i feel pois memory kick in and some fatigue but not as bad as pois. But it was never like this, before when i dont sleep enough i get hyper. .........and these are reason why i believe it is connected to adrenaling.
Quote from: B_Jim on 13/08/2009 12:10:28I hope our pro biotics testers will confirm effect on Pois soon Me, too. My retired-psychiatrist friend, struggling with strange digestive symptoms, suggested probiotics to me, but my GI doc completely disagrees with it (for me).
I hope our pro biotics testers will confirm effect on Pois soon
Just a thought guys.From the looks of things there arent any blood results that really make a common denominator.Also, age and health status seems to vary as well.How about looking for a common denominator in any prescription / recreational drugs usage in the past?Just a thought?Its an anon forum so it doesnt matter if youre an ex crackhead
More from our new friend at NORDHi [Demo],That article is attached. I hope you find it inspirational! (These are just three examples of grass roots efforts to raise awareness and research funds--there are so many others.)Thank you for your kind words. If and when you all become interested in forming a formal group, please let me know, so that I can forward your message to the appropriate person here at NORD.Best wishes to you all!Sincerely,Stefanie Putkowski, RN, BSNClinical Information SpecialistResearch Program AdministratorNational Organization for Rare Disorders55 Kenosia AvenuePO Box 1968Danbury, CT 06813-1968Phone: 203.744.0100Fax: 203.798.2291email: email@example.com://www.rarediseases.orgJoin our online communityhttp://nord.clinicahealth.com/NORD Subscription Servicehttp://www.rarediseases.org/programs/subscriptionsAttachment: Word docRAISING FUNDS FOR NORD’S RESTRICTED RESEARCH FUND “Keep it personal.” “Find your allies…” These are two quotes from NORD members, expressing some of the repetitive themes echoed by families and/or patient organizations who have successfully raised funds for NORD’s restricted research program. NORD realizes just how daunting it must seem to try to raise the minimum required funds of $35,000 to sponsor a NORD research grant. But government and corporate financing is often at a bare minimum for rare disease research (for many individual rare disorders, funds are essentially non-existent). There is a real need for individuals to take the lead in providing the initial seed grant money for researchers. We decided to go straight to the horses’ mouths by contacting some of NORD’s successful family/group research grant fund raisers. Our aim was to learn, and then to impart to our members and friends, how they took on this challenge. (We wish to point out that none of these individuals are professional fundraisers.) Here, in their own words, are the methods used by some of NORD’s families to raise money for a research grant. Todd and Heather Talarico, whose 12-year-old daughter, Gabriella, has APS Type 1 (see NORD Request for Proposal article, page_): "If it's meant to be...it's up to me." This is a motto that has held significance in our lives but was never more meaningful then when our daughter Gabriella was diagnosed with a rare disorder. Your first feeling is that of loneliness. Unlike other challenges that parents face, a rare disorder does not come with tons of literature and a process of treatment clearly defined. You are looking for answers, but then you realize that if you want to get research accomplished, you have to push for it, yourselves. Fortunately for us, we found NORD. The passion and professionalism of the NORD community helped us to find both the solution and a platform to take action. You'd be surprised to learn what you’re capable of when you get a little direction and have family and friends who care about you. When we attended our first NORD conference in 2006, we learned invaluable lessons from those who had walked the path before us and who have loved ones with other rare disorders. We learned the importance of educating the public and raising awareness, and created our website shortly thereafter. We also learned about fundraising and NORD's research program. It just seemed to be such a great fit for us. NORD would act as the repository for the grant funds, providing a tax-deductible base for contributors. Then, after very careful scrutiny, NORD's medical advisory committee (MAC) would choose the best researcher/study, obtained from a pool of carefully screened and reviewed research proposals. We have successfully established a restricted research grant fund at NORD for APS Type 1. In the process, we learned a lot about fund raising. Here are a few tips that have worked for us— 1. Educate yourselves. There are books on fundraising. If you have a local chapter of a nonprofit organization, go in and speak with the director. You can learn a lot from those people who raise funds for a living.1. Be tenacious. Some people may challenge your decision-making, but if your hearts are in the right place and your motivation is high, you can sway the most challenging opponent and get them to help you too!1. Find events that will raise awareness, raise funds, and that are fun for people to do. Our first golf outing, "Driving for a Cure," was held last year, and turned out to be a great event! We raised awareness not only about Gabriella’s disorder, but also about rare disorders as a whole. We had corporate sponsors buying “hole sponsorships,” and also had other events such as a “beat the pro” contest and a “tricky tray auction.” It was fun for all and we raised over $10,000 dollars! This year’s event will be held May 16th in Reading, PA. If you want to attend, we have room!1. Provide flexibility to those wanting to donate. If you create a web site, set up a link to NORD. Our site, www.apstype1.org, has a direct link to NORD’s website. This enables people to make a donation with a credit card, on Gabriella’s behalf, to the APS Type 1 restricted research fund. All donations are 100% tax deductible.1. Find your allies...those who share your common bond. By linking up with the few families who are affected by APS Type 1 in the US, we have shared success and found other ways to raise money. Tim and Paula Muehler have organized donation programs through their local schools. Paula went to the School Board and gained their support for in- school events, such as "Pay $5 dollars to wear jeans to school for the day." It was a great event in support of their daughter, Mackenzie. Sherri and Dave Seyfort held a raffle basket and auction event in their local town, raising $10,000 dollars! They also did a great job of getting the local newspaper to write a feature article on their son, Matthew.1. Ask for help. And, if someone offers help, take it. If someone knows more about this subject than you do, ask for their assistance. We have no “pride” anymore. We know what we're good at, but have become aware of where we need advice. We no longer worry about asking anyone for help. You'd be surprised at the level of support you will get from people if you just ask.We've learned so much in just 2 years, and have raised close to $50,000 dollars for NORD’s restricted research fund for APS Type 1! We know that we still have long road ahead, but are confident that with our faith, family, and friends, we can accomplish anything. Reta Honey Hiers, RN, President, “The Tarlov Cyst Disease Foundation” (see NORD Request for Proposal article, page _)The Tarlov Cyst Disease Foundation (www.tarlovcystdisease.org) took a more formal approach to fund raising by incorporating their organization first. “Our fund raising was preceded by years of organization and preparation,” says Reta Honey Hiers. The Foundation’s Board of Directors felt it was extremely important to have the 501 (c) (3) approval before attempting any fund-raising. The next requirement we felt was essential was to have the Foundation’s website online, so that potential donors could read about the Foundation, its mission, specific purposes and objectives, and to learn about Tarlov cysts.After the website was online, announcement letters were sent to those who the Foundation knew to have Tarlov cysts. “We wanted them to know that we had laid the groundwork for a non-profit organization that would advocate for them and promote research and education in the future.”Personal letters written by the organization’s Board of Directors were sent to family and friends to announce the Tarlov Cyst Disease Foundation and to ask for their support. “We asked them to share the information with their family and friends and perhaps determine any charitable foundations that had grants available for which we might apply.”They also asked the Tarlov cyst patients to inquire within their family, friends, and co-workers as to potential charitable foundations and grants for which they might qualify. “As a result, we submitted four grant proposals to Family Foundations that we learned about in communications with family and friends. Unbelievably, we received funds from three of the four! These grants provided a substantial amount of our fund raising efforts toward initial research...almost half of it!”The remainder of our initial fund raising efforts came from memberships and donations from Tarlov cyst patients, family, and friends.“This is only a beginning,” says Ms. Hiers. ” We realize that we have much more work to do. A philosophy of ‘plan, work hard, organize, and ask, believe, and receive’ is one with which we began and will continue to follow. “The Tarlov Cyst Foundation has just provided NORD with funding for their first organization- sponsored research grant. Teri and Mike Holdner, whose son, Joshua, turns 10-years-old this year, has hereditary tyrosinemia, type 1.(See NORD Request for Proposal article, page_)“We didn’t want to sit around and do nothing,” say Teri and Mike Holdner of North Carolina, after they learned of their son’s diagnosis. “When NORD told us there was no research fund for hereditary tyrosinemia, type 1, we knew that we had to so something. Becoming proactive helped us to deal with the unknown.“Our first steps were very small. Teri came up with the first idea-- to put donation cans out at gas stations.“Then, we realized that we had to create awareness about tyrosinemia type 1. So, we told our story to the local paper, and before we knew it, started to receive outside help. Because of that article, someone contacted us, offering to help us develop a website to raise even greater awareness about Joshua’s disorder.We posted questions for ideas for a fundraiser on our website, and came up with a golf tournament. Having never put a fund-raiser together, we contacted Duke University Children’s Hospital & Health Center, and in turn, they put us in touch with someone who had done fund-raising for them. (Once you have an idea and start working on it, you will be surprised by how many people want to help you!)With the help of our Duke contact, we raised $5,000, and we then knew that we had to hold more events. We got invited to speak about tyrosinemia type 1 at a local church, and again, to our surprise, we received a $2,300 donation. This church, in turn, became our title sponsor for the next golf tournament.In that church audience was a gentleman who helped us at the next golf tournament, where $15,000 was raised. This led us to develop our 501(c)3 organization, “Joshua’s Cure.”If there is anything that we can tell people who want to do fund-raising for NORD’s restricted research program, first and foremost—make this a personal story. People will feel your passion and dedication, and you will be more successful.In our case, donations raised by one other family with an afflicted child, and numerous personal donations through fundraisers, have already helped us to fund three tyrosinemia type 1 grants for NORD’s research program. To date we have raised funds by holding seven golf tournaments, six “50’s dances,” two bowling tournaments, a “dating auction” at a local bar, donations of proceeds of the building of a home, one Super Bowl party, and countless personal, individual donations. All donations have gone to NORD’s restricted research program for tyrosinemia, type 1.It is very satisfying to us that “Joshua’s Cure” (www.joshuascure.org ) can contribute to research that will help researchers find a cure. In total, we have raised over $80,000, and are still counting!And it all started in a small town with donation cans in a gas station!NORD remains amazed and very proud of the tenacity of these and all the other families and patient groups who have been able to raise those precious funds. They personify the adage that says, “Where there is a will, there is a way.”
Lauracostis, your theory on ions and neurosteroids are awesome is there a certain site that u got that from? It's interesting because i was just in the hospital because i have been vomiting and unable to keep food down since january and very dehydrated yet my potassium,sodium and chloride were all high. All my pois and fatigue and vomiting got worse when they put me on prevacid (proton pump inhibitor)that is some dangerous stuff! I have not been the same since they had me try it
The one I'm planning on trying is called Diphenhydramine which is most often found in "sleep aids" like Benedryl and Nytol nowadays. Obviously this can only be taken shortly before you go to sleep, nobody wants to fall asleep at work or at the wheel of their car ..... Will let you know how successful (or not) it turns out to be!
Demo, This is a huge step in the right direction.. Congratulations and I wish you all good luck and well wishes, that this will open the doors that need to be opened to get this problem attended to in a timely manner, so that all concerned can know there is hope and answers to so many questions! None of you are alone there are many of you suffering and thus you all together make a very strong resource! There is strength in numbers and that old saying is certainly true in cases like this where you need to support each other and stand together in one voice to begin to be heard and to get some real help! Congratulations to you all!
please try and check the ego before u turn your computer on because i have noticed you turning alot of people off of this site and that upsets me because i am desperate for a solution!!!
How about looking for a common denominator in any prescription / recreational drugs usage in the past?
I had a brainstorm this morning. Our medical college has to have a library, and it turns out it is open to the public, along with librarians whose main purpose is to help people find specific literature on the topic they are researching. This is the library I will be checking out:http://www.utoledo.edu/library/mulford/refdept.html#whatis
Take melatonin 1/2 hour before bed. (I've already been taking this to help fall asleep, and have to say it works very well, it's not like a drug where it forces you to sleep, it just puts me in the mood to sleep. I recommend trying it if you have difficulty sleeping 1 mg to 3 mg, don't go above 5 mg or you'll regret it)I'll let everyone know if these changes help me or not.
Martin, I had similar results with creatinine. Was told to reduce red meat (which I don't eat that much).
Quote from: sclover49 on 06/08/2009 18:45:26Take melatonin 1/2 hour before bed. (I've already been taking this to help fall asleep, and have to say it works very well, it's not like a drug where it forces you to sleep, it just puts me in the mood to sleep. I recommend trying it if you have difficulty sleeping 1 mg to 3 mg, don't go above 5 mg or you'll regret it)I'll let everyone know if these changes help me or not.Sclover, just wanted to add to your melatonin post. I agree with you it can be helpful.-Some brands contain more melatonin that what is written on the bottle (written in an article but I don't know if it's true), so maybe it can be good to find a reliable source (MD prescription ?)-I saw supplements as low as 100mcg/caps (0.1mg).Melatonin doses of 0.1mg can be enough to improve sleep:http://www.ncbi.nlm.nih.gov/pubmed/11600532Melatonin use along with certain anti-depressant medications can pose potential health risks and should only be used under direct supervision of a qualified doctor.Different people will have different responses to its effects. Lower doses appear to work better in people who are especially sensitive. Higher doses may cause anxiety and irritability.The best approach for any condition is to begin with very low doses of melatonin. Keep the dose close to the amount that our bodies normally produce (< 0.3 mg per day). You should only use the lowest amount possible to achieve the desired effect. Your doctor can help you determine the most appropriate dose for your situation, including how to increase the amount, if needed.http://www.umm.edu/altmed/articles/melatonin-000315.htmMelatonin should not be used in most children. Because of its effects on other hormones, it might interfere with development during adolescence.http://www.rxlist.com/melatonin/supplements.htm
Quote from: demografx on 15/08/2009 22:30:21Martin, I had similar results with creatinine. Was told to reduce red meat (which I don't eat that much).I was eating a lot of white meat days before the test but no red meat..