Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 In a message dated 6/16/2003 10:04:58 PM Eastern Daylight Time, deverslady@... writes: > Right now I don't really > have any questions just letting of steam and looking for others > dealling with the same things. Hoping for the best with the meds, > will let you know how it goes. Welcome to our board. You will find that we are all in the same boat as you. some better and some worse but we all have our share of good and bad days. If there are any specific questions, please ask away. We feel your pain. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 -Hi Gail, Welcome! I have read that PA can appear after accidents. I don't mind being on medicine the rest of my life as long as it helps and the side effects are monitored. When I first had PA I thought the same as you. That was a long time ago. Good Luck! Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Gail, give the Enbrel time. It used to be a difficult, frustrating and painful process to get up and going in the morning. I've been on Enbrel for almost 5 months now and it has made a world of difference. Hope it works for you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 In a message dated 6/17/2003 8:58:15 AM Eastern Daylight Time, janekarsten@... writes: > Gail, give the Enbrel time. It used to be a difficult, > frustrating and painful process to get up and going in > the morning. I've been on Enbrel for almost 5 months > now and it has made a world of difference. Hope it > works for you! How long did it take the Enbrel to work for you? It is about 2 1/2 months straight for me now and I don't think it is helping too well. My rheumy said to give it more time. Today I went to try on shoes and I made an attempt to try one with a heel other then a flat shoe. No good!!!! Unfortunately, my heel days are over. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 > Gail, give the Enbrel time. It used to be a difficult, > frustrating and painful process to get up and going in > the morning. I've been on Enbrel for almost 5 months > now and it has made a world of difference. Hope it > works for you! thanks Jane, I do my 5th injection today. the others were hard to do but I made out ok. I keep chickening out with this one, I have two silver dollar sized red patches from the last injection. which I knew was a possiblity but did not know until yesterday that each shot can affect all the other sites. The shots themselves are not bad, I don't even feel them. Just having a hard time today, if I can't get it done myself will have hubby do it when he gets home. Hoping for the best out of this for myself and wishing and praying for the best for everyone else that is dealing with the same. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 I had quarter size red patches where I would g ve myself the enbrel shots.. at first. After about two months those went away and I haven't had any trouble with them since. I have been on enbrel since Feb. Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 Hi,I know an original method of treatment cancers but it is sounds so strange that I hardly believe somebody will believe in it. sun_angel00 <sun_angel00@...> wrote:Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may and I have been on Alesse to stop the growth of the tumors. durning the testing time it had spread from my left ovaries to my right. Thats all I really have to say about that. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 HI Cheryl, I'm sorry to hear about your cancer at such a young age. Welcome to the group. Feel free to ask questions and we'll help you as much as possible. How's your energy level? Have you made any diet changes? The most important thing to know is that cancer feeds on sugar. You need to get some books and make big changes in your diet. Learn about the glycemic index and choose foods that are low glycemic. You should also stay away from fried foods because the oils are bad for your system. Many of us here eat a combination of cottage cheese and flax seed oil. Here's some links on that diet: Dr Johanna Budwig diet http://home.online.no/~dusan/diseases/cancer/cancer_dr_budwig.html Budwig diet to treat cancer http://www.cancure.org/budwig_diet.htm Duke Univ. Boasts New Study (the URL is correct: " dukestudyignorsbudwigwork " ,-) http://educate-yourself.org/fc/dukestudyignorsbudwigwork15aug01.shtml Case reports http://www.beckwithfamily.com Budwig Flax Oil Diet http://www.positivehealth.com/permit/Articles/Nutrition/turner60.htm Getandstaywell Budwig http://www.getandstaywell.com/archive28.shtml What are Essential Fatty Acids? http://waltonfeed.com/omega/ess_fat.html Phytoestrogens, lignans http://ethesis.helsinki.fi/julkaisut/laa/kliin/vk/mazur/phytoest.pdf Goggle hits " Budwig AND cancer " : 1750 Books: Flaxoil as a True Aid Against Arthritis, Heart Infarction, Cancer And Other Disease* 0-9695272-1-7 The Oil-Protein diet* I also recommend Bill 's book to help you sort through all the information of alternative cures. See getandstaywell.com. If you can't afford the book, ask him for a discount. Chinese Medicine also has a good track record helping ovarian cancer. Do you live near a city with a China Town? Blessings, Virginia At 08:52 PM 6/15/2003 +0000, you wrote: >Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may >and I have been on Alesse to stop the growth of the tumors. durning >the testing time it had spread from my left ovaries to my right. >Thats all I really have to say about that. > >Cheryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 Cheryl. Please contact me directly. I have information that may interest you regarding an all natural product that has been beneficial to others dealing with your type of cancer. leskruse@... -- Re: [ ] new here HI Cheryl, I'm sorry to hear about your cancer at such a young age. Welcome to the group. Feel free to ask questions and we'll help you as much as possible. How's your energy level? Have you made any diet changes? The most important thing to know is that cancer feeds on sugar. You need to get some books and make big changes in your diet. Learn about the glycemic index and choose foods that are low glycemic. You should also stay away from fried foods because the oils are bad for your system. Many of us here eat a combination of cottage cheese and flax seed oil. Here's some links on that diet: Dr Johanna Budwig diet http://home.online.no/~dusan/diseases/cancer/cancer_dr_budwig.html Budwig diet to treat cancer http://www.cancure.org/budwig_diet.htm Duke Univ. Boasts New Study (the URL is correct: " dukestudyignorsbudwigwork " ,-) http://educate-yourself.org/fc/dukestudyignorsbudwigwork15aug01.shtml Case reports http://www.beckwithfamily.com Budwig Flax Oil Diet http://www.positivehealth.com/permit/Articles/Nutrition/turner60.htm Getandstaywell Budwig http://www.getandstaywell.com/archive28.shtml What are Essential Fatty Acids? http://waltonfeed.com/omega/ess_fat.html Phytoestrogens, lignans http://ethesis.helsinki.fi/julkaisut/laa/kliin/vk/mazur/phytoest.pdf Goggle hits " Budwig AND cancer " : 1750 Books: Flaxoil as a True Aid Against Arthritis, Heart Infarction, Cancer And Other Disease* 0-9695272-1-7 The Oil-Protein diet* I also recommend Bill 's book to help you sort through all the information of alternative cures. See getandstaywell.com. If you can't afford the book, ask him for a discount. Chinese Medicine also has a good track record helping ovarian cancer. Do you live near a city with a China Town? Blessings, Virginia At 08:52 PM 6/15/2003 +0000, you wrote: >Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may >and I have been on Alesse to stop the growth of the tumors. durning >the testing time it had spread from my left ovaries to my right. >Thats all I really have to say about that. > >Cheryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 My wife has recurring ovarian cancer and has just started on the Budwig Diet of Flax seed oil and cottage cheese. she is doing very well at the moment but time will tell. Try acts@... Ray Kennedy Re: [ ] new here Hi,I know an original method of treatment cancers but it is sounds so strange that I hardly believe somebody will believe in it. sun_angel00 <sun_angel00@...> wrote:Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may and I have been on Alesse to stop the growth of the tumors. durning the testing time it had spread from my left ovaries to my right. Thats all I really have to say about that. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 I would love to hear the original method of treatment! Cheryl Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may > and I have been on Alesse to stop the growth of the tumors. durning > the testing time it had spread from my left ovaries to my right. > Thats all I really have to say about that. > > Cheryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 I have thought about it and I can't eat cottge cheese, I just don't like it. Cheryl Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may > and I have been on Alesse to stop the growth of the tumors. durning > the testing time it had spread from my left ovaries to my right. > Thats all I really have to say about that. > > Cheryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 I have thought about it and I can't eat cottge cheese, I just don't like it. Cheryl Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may > and I have been on Alesse to stop the growth of the tumors. durning > the testing time it had spread from my left ovaries to my right. > Thats all I really have to say about that. > > Cheryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Cheryl, you can use natural yoghurt instead. Ray [ ] Re: new here I have thought about it and I can't eat cottge cheese, I just don't like it. Cheryl Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may > and I have been on Alesse to stop the growth of the tumors. durning > the testing time it had spread from my left ovaries to my right. > Thats all I really have to say about that. > > Cheryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Waht is the original method of treatment. Ray K [ ] Re: new here I would love to hear the original method of treatment! Cheryl Hi I am new here I am 18 I have ovarian Cancer. I was diagnoised may > and I have been on Alesse to stop the growth of the tumors. durning > the testing time it had spread from my left ovaries to my right. > Thats all I really have to say about that. > > Cheryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Cheryl, There is a big risk of your being confused by the many protocols that will be suggested to you by myself and many others. All with the best intentions. Actually IMHO most of them can cure or put in remission various types with certain individuals. What is important is for you to believe that there is one that will fit your particular need. I have been interested in alternative treatment for cancer since 1963 when my wife was diagnosed as having Stage 4 Ovarian Cancer. She Underwent surgery and radiation. After which I wanted her to start on the Gerson diet as well as go to the Hoxsey clinic(I had just made the acquaintance of a man who's liver cancer had metasticised all over and was told he had 3 Mos. left. He went to Hoxey's. When I met him 2 years later, he was the picture of health. His Drs. could not find a trace of cancer and said that he was one of the few were lucky enough to have a spontaneous remission. They ridiculed the idea that anything but surgery, radiation, or chemo could cure cancer. Because they fed my wife the same line, she lasted 1 year and a day from her first surgery. Only when she was in the hospital for the last time and too far gone to do anything did she realized the bill of goods those skunks had fed her. During her illness I heard of a number of protocols but could never get their specific formulas. One of them was a combination of flax seed oil and cottage cheese. Three years ago I was diagnosed as having Stage4 small B Cell Non Hodgkins Lymphoma. I started takng every supplement you can immagine. My blood gradually started to slip until a year ago last June I was on a weakened condition. At this time I was warned by one of the supplement mfgrs. that taking their product within 2 hours of any several of the others would neutralize the effect of theirs and possibly the others. At the same time I ran acrost the Budwig Flax Oil/Cottage Cheese formula on s site. He recommended going to the Flax Seed Oil site for more specific details. This was the best thing I could have done. As of last Fri. My blood is nearly normal and a cat scan in Jan. showed no trace of cancer in the lymph glands. Of all the different protocols I believe it is the easiest and cheapest to follow Go to FlaxSeedOil2 . You will get many first hand testimonials as to it being effective. The diet changes are simple. Barlean's sells their flax oil(none better) for wholesale to anyone with cancer. If there is anything else I can offer, don't hesitate to ask. Bob [ ] Re: new here > I would love to hear the original method of treatment! > > Cheryl > > Hi I am new here I am 18 I > have ovarian Cancer. I was diagnoised may > > and I have been on Alesse to stop the growth of the tumors. > durning > > the testing time it had spread from my left ovaries to my right. > > Thats all I really have to say about that. > > > > Cheryl > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Oh i can I thought it had something to do with the cheese...Alright I will try it. Cheryl Hi I am new here I am 18 I > have ovarian Cancer. I was diagnoised may > > and I have been on Alesse to stop the growth of the tumors. > durning > > the testing time it had spread from my left ovaries to my right. > > Thats all I really have to say about that. > > > > Cheryl > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Lyme disease.........unless the blood and urine tests come back positive.....is truly a diagnosis of exclusion. I'm sure your Daughter has had tons of tests......all coming back negative. I hope she was given a Western Blot Test for Lyme and checked her for the Co-infections Erlichiosis and Babisosis.(sp) Good Sites to Look At: http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html http://www.geocities.com/HotSprings/Oasis/6455/bartonella-links.html http://www.lymenet.org/ http://www.ilads.org/ If her symptoms continue after all the tests for lyme and all the exclusion tests come back negative, then putting her on Doxycylcline is probably a good idea. Don't forget antibiotics is just as damaging as the lyme disease. She will know within a few days if she has Lyme because as the spirochetes are killed off they release toxins into the body ( this is a good thing) but she will feel horrible. Most call this herxing. So DRINK LOTS OF WATER. Exercise too, helps to kill these buggers off. Ask you doctor lots of questions and take him/her information to help guide him in his/her treatment of your daughter. (or just find a Lyme literate MD) I would certainly support the body during this time of being on abx . Sue M can guide you in that area.......its not my expertise. Well actually none of this is my expertise.......I'm only speaking from experience. I supported my immune system (especially my liver) with Milk thistle and Lemon in water......great cleansers. I also believe that taking high amounts of Olive Leaf extract also helps to kill off the spirochetes.....I take a tremendous amount. (its a natural abx) Remember I'm not a Dr. ........just sharing my experiences. I am cured of lyme........but do have lasting damage that I am trying to deal with. Other useful information when you are researching http://www.freemedicaljournals.com/ http://www.pubmed.nl/ http://www.medbioworld.com/med/journals/med-bio.html http://www.sicklehut.com/infectiousdis/links.htm Drug info: http://medlineplus.nlm.nih.gov/medlineplus/druginformation.html http://www.rxlist.com/ Drug interactions http://vm.cfsan.fda.gov/~lrd/fdinter.html http://www.fda.gov/medwatch/safety.htm ConnieKnwnj When our bodies & minds are out of balance....... ........we suffer! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 I'm so sorry to hear your daughter has been so very ill. Unfortunately, her story sounds all too familiar to me. Lyme is a " clinical diagnosis " and many times it doesn't show up in blood tests. If it were my daughter, I'd get her to a LLMD right away. If you need help finding one, go to http://www.lymenet.com They saved my life by helping me to find a doctor and get treatment right away. There are tons of people there with this dreaded disease and archives of files supporting what I'm telling you. I sure do wish you and your daughter the best! If you'd like to talk with me further, my e-mail address is uaw_union_girl@... I'm here for you. Take care, Indiana Lymie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Connie Thank you for your reply. My daughter has had the Western Blot. There were some positives, but according to the Lyme expert, not enough to positively say Lyme. I am not sure if she had a urine or if she was checked for the other co infections. I appreciate all your suggestions. We are in the Boston area. If anyone knows a Lyme knowledgeable doctor, we would appreciate the referral. Libby ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 hi libby pressure behind eyes, headache, and stiff neck are all common symptoms of lyme. stiff neck that is not changed thru activity is the most unique symptom. not all, but most get this. if she has lyme than she should experience a significant change in symptoms on the doxy. look for an increase in symptoms on day 4,5,6, or 7. this would be a " herx " reaction from partial die off of organisms. ultimately, a lyme diagnosis for your daughter has to come from clinical symptoms and should be made as soon as possible. if she has enough symptoms, she MAY need more agressive abx oral dose, or combinations of oral abx to get the herx. the herx is considered by those who deal with this, very strongly diagnosive. >My daughter, age 40, has been having 9 weeks of unusual >headaches,dizzyness, low grade fever and fatigue. She has seen 7 >doctors in assorted specialties. She has had no answers. Based on >her bloodwork, two doctors think she may have Lyme, and based on the >same bloodwork, two were sure she does not. She is starting a three >week course of doxycycline. Any input on how to combat the side >effects would be greatly appreciated as would any input on how to >actually get this thing diagnosed. >Libby > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 There are a lot of SO-CALLED lyme experts. If you feel comfortable sharing his name, I can tell you if the folks at LymeNet believe he's an expert or not. Did you post on LymeNet?? I looked for you!! Your daughter is very lucky to have you helping her. I'll see what I can find out about a Boston LLMD. I believe there are quite a few near you. I can assure you 3wks of treatment doesn't " cure " this disease. Lyme infects a person's blood. Your blood travels to every organ and tissue in your body Some organs are harder to cleanse than others. There are a lot of supplement and diet changes that go along with abx treatment!! Just using abx alone is just as dangerous as having lyme, if not more!! That's why a REAL LLMD, not an infectious disease specialist, hematologist, rheumatologist, neurologist, etc! They claim to know about lyme, but they don't. Ask them this: " What kills the cyst form of lyme? " It's the easiest answer in the world, and all LLMD's know the answer. Most MD's say they didn't know there was a cyst form or they'd have to look it up You don't want your daughter and grandchildren to be anyone's guinea pig!! They deserve treatment from a REAL LLMD who knows his stuff so she can get well and enjoy their lives together. Documentation and web sites are listed in the archives at lymenet. Please let me know if I can help you further. Carol Kerr -- Re: [ ] new here Connie Thank you for your reply. My daughter has had the Western Blot. There were some positives, but according to the Lyme expert, not enough to positively say Lyme. I am not sure if she had a urine or if she was checked for the other co infections. I appreciate all your suggestions. We are in the Boston area. If anyone knows a Lyme knowledgeable doctor, we would appreciate the referral. Libby ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Do you have access to a fax machine. I have documentation from my LLMD that explains why a western blot called negative by an MD is actually positive by LLMD standards. Having lyme is like being pregnant! Nobody is a little pregnant. Either you are, or you aren't. No matter how much lyme they find, if it's there, it's there!! Plus their are many co-infections that a duck is never going to check for. Please try to get her to an LLMD!! Carol Kerr -- Re: [ ] new here Connie Thank you for your reply. My daughter has had the Western Blot. There were some positives, but according to the Lyme expert, not enough to positively say Lyme. I am not sure if she had a urine or if she was checked for the other co infections. I appreciate all your suggestions. We are in the Boston area. If anyone knows a Lyme knowledgeable doctor, we would appreciate the referral. Libby ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Carol, You said ... " That's why a REAL LLMD, not an infectious disease specialist, hematologist, rheumatologist, neurologist, etc! They claim to know about lyme, but they don't. " Please don't lump all of those categories into one non-LLMD pot because it's just not true. A rheumatologist did more for me than any other Dr. did. Some not only *claim* to know about Lyme but they actually do. Imagine that. I just hate to read posts like yours that run down every single Dr. that *you* think is not Lyme literate. Have you been to every single Dr. in the country? I think not. You are basically telling all the newbies and newly diagnosed, that unless they go to a specific Dr., and *not* a rheumatologist, neurologist, etc., they won't get well when you have no clue if that's really true. Everyone needs to do the research, ask the questions, and then make the choice that is right for them, not right for someone else. Some swear by natural products, others hate them. Some swear by antibiotics alone, others hate that idea. Obviously, some swear by one type of Dr. while others have found help from non-traditional Lyme literate specialties. We're all different and different things work for different people. Just because it worked for one doesn't mean it will work for you. Just remember that! Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 If they helped you, I'm thrilled for you. And you are correct, sometimes they do help. Apparently, the " lyme doctor " this young lady has isn't having success at helping her, or her mother wouldn't be looking for another avenue right? Plus she mentioned that this " specialist " gave her three weeks abx treatment. Sounds like a duck to me! Though it is true there are lyme-literate MD's in these other professions they are few and far between. But, in my experience and many others, their misdiagnosis and mistreatment hurt me far more than they helped! I don't think it's unreasonable to suggest that a LLMD, well known to the lyme community, would be the best place to start for initial treatment of LYME, especially when the person is very ill. I didn't come here to argue or hurt anyone's feelings. I was just offering my opinion on the subject in an open forum because I saw the post. Sincerely, Carol Quote Link to comment Share on other sites More sharing options...
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