Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Debbie - Welcome to the group!! Probably your son is entering pre-puberty - mine started having seizures again after being seizure free for 5 years WITHOUT meds. The experts say seizures either get better or worse w/ puberty because of the hormones. My son is now 13 - we've had uncontrolled seizures since LAST July - we're on 5 MEDS - Depakene, Klonopin, Keppra, Zonegran and Topamax and had a VNS implanted in July of this year. I'd call you son's neurologist - I thought you were only supposed to give Diastat if it was a life-threatening seizure - not every time he has one - if they are life threatening every time (Grand Mals) then you definitely need to talk to his neurologist. I also co-slept for a while, but worked w/ meds to get him to sleep during the night - mostly seizes during the day - but he's not autistic - his brother is and he has always had sleeping problems but no seizures. GOOD LUCK! , Mom of Cody and Caleb _____ From: [mailto: ] On Behalf Of warwick51197 Sent: Wednesday, October 22, 2008 11:35 PM Subject: [ ] Introduction Hello - I have an 11 year old son with autism and epilepsy. He had a VNS implanted about 2 years ago and while it initially seemed to help reduce the number of seizures he was having, they have now seemed to be increasing over the last six months (we make at least one trip to the Emergency Room every month). He is a rather big boy (gained lots of weight on Depakote a few years ago) and now he's on 400 mg of Topamax. We also keep 17.5 mg of Diastat (acudial) at home to administer when he's having a seizure. I sleep next to him every night because they always seem to happen at night and I can not sleep in another room knowing he might be having a seizure (does anyone else do this?).. Anyways, most of the time when I catch a seizure, administer the Diastat, we still have to go to the Emergency room. They usually have to give him 1 to 3 miligrams of Ativan to help stop the seizures. He always gets this " red blotches " on his torso, back and arms while he's having a seizure. Has anyone else experienced this? The neurologists can not tell me what causes this. Also, after he's had a seizure, he NEVER sleeps that night....stays awake the entire night. This is so hard to deal with and it's almost worse that dealing with the seizures, especially when I have to go to work the next day! you would think that with all the meds they administer to him in the ER, which make him sleep for hours, he would be sleepy into the night...NOT so! He is also so much more Aggressive after having a seizure and it usually takes about a week for him to get back " to his old self " . Anyways, I just wanted to introduce myself and say hello to all those that are dealing with seizures. I hope they do not get so bad (and frequent) in the future that I am unable to work. Thanks, Debbie (in CALIF) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 > > Hello, I am new to the group. My name is . +++Hi . Welcome to our group! > I have an 11 year old son who is crying all the time that he has > stomach aches. He has been to the family doctor, has had xrays, has > had allergy testing (and there are allergies). But this spring he was > very sick and was on alot of different medications. I am wondering now > if he could have a candida problem along side his allergies? He is > gluten and dairy intolerant. Though we only learned he was gluten > intolerant this spring, and four years ago we learned he was dairy > intolerant. I know that candida can trigger food allergies...and that > over use of medications can too...I was and still am struggling with my > own candida problem. +++Allergies are very misunderstood by doctors and people alike, since all allergic reactions point to a very depressed immune system, and allergy symptoms are exactly the same list of " healing symptoms " the body creates in order to deal with an overload of toxins and/or heal itself. +++All candida sufferers are gluten and dairy intolerant (except for butter that is clarified, called ghee). After curing candida a person can have gluten and most dairy (the butterfat content in dairy helps the body digest lactose, so high butterfat products are better). +++All food allergy tests are highly inaccurate, and they shouldn't be relied upon for eliminating foods. First, the Leaky Gut Theory is totally false and also laboratories do not use " pure " foods to make antigens for testing. Foods are not necessarily organic, and they are cleaned with solvents they don't remove - see this article: http://www.healingnaturallybybee.com/articles/heal11.php +++Here's other articles that the antibody theory are also false, which is the basis of allergy testing: http://www.healingnaturallybybee.com/articles/menu4_1.php > I was told that in the morning you can spit in a glass of water to find out if you have candida..is this true? Is there anything I can do to help my son? +++The spit test isn't very accurate so do not rely on it. The best test is Dr. Crook's Questionnaire: http://www.healingnaturallybybee.com/articles/intro3.php +++Yes, there is a lot you can do for your son. Even IF (per chance) he doesn't have candida, this program is a healing program which improves anyone's health since it is according to Nature's Laws on health. That is because it builds up the immune system, which is the only way to cure any health problems. +++I suggest you read articles emailed to you on Candida, or see the Candida/Yeast Section on my website and read " How to Successfully Overcome Candida " and " Curing Candida, How to Get Started " - http://www.healingnaturallybybee.com/candida/index.php +++Take one step at a time, which first starts by reading and learning so you understand completely what needs to be done and why. +++There are a few mothers on this group who have their whole family on this program, so they'll be around to help and support you. The best in health to you and your son, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Hi, Don- I’ve been here a while, too. I need to remember the purpose of this group isn’t so much support as information, and while I may not believe all the info, some will benefit from it. m From: [mailto: ] On Behalf Of ludichrist2000 Sent: Tuesday, January 06, 2009 2:52 PM Subject: [ ] INTRODUCTION Hello everyone. My name is don. I am 58 this yr, just an old hippy. I found out last june that I have hep c. I am a geno 1B-86,000 load. I got my hep probably back in the late 60's from using a needle. I am awaiting tx or whatever the doctor advises me. I am not in any pain, but I do experiance weakness, extreme tiredness, and lots of brain fog. I live alone in a new town in kansas, and have no friends or family close by. I like to come here everyday and read what info has been posted. I have learned a lot already. I hope to partisipate and beat the dragon. Thank you. love don in kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 good to see you again Yeah Im gleaning as much info as I can and spreading it around. You have some good info yourself. Keep it comming. I hope your doing well. love don in kansas From: Matchinsky <mmatchinsky@...>Subject: RE: [ ] INTRODUCTION Date: Tuesday, January 6, 2009, 4:40 PM Hi, Don- I¢ve been here a while, too. I need to remember the purpose of this group isn¢t so much support as information, and while I may not believe all the info, some will benefit from it. m From: [mailto:HepCWebWarr iors@groups .com] On Behalf Of ludichrist2000Sent: Tuesday, January 06, 2009 2:52 PM Subject: [ ] INTRODUCTION Hello everyone.My name is don. I am 58 this yr, just an old hippy.I found out last june that I have hep c. I am a geno 1B-86,000 load.I got my hep probably back in the late 60's from using a needle.I am awaiting tx or whatever the doctor advises me.I am not in any pain, but I do experiance weakness, extreme tiredness, and lots of brain fog.I live alone in a new town in kansas, and have no friends or family close by.I like to come here everyday and read what info has been posted. I have learned a lot already.I hope to partisipate and beat the dragon.Thank you.lovedon in kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Hi Don, I"m Sharon. An old hippy gal. Why would you think you need a TX with a genotype of 1b. You viral load is quite low, considering your genotype and your viral load you can manage your fatigue and brain fog with nutrition and herbs, exercise and water. I have been living with Hep C for a long time, and had been on many forums. I fight the dragon and I plan to have a quality life. I would not trust my life to a doctor. We have just one go of it on earth, and doctors have only one path of thought. Just some thoughts. I manage my hepC with herbs, and nutriceuticals. I live a full live, in spite of fatigue, pain, brain fog and hold a good job. I encourage all to consider what is important to you. The treatment route is not for all. -- [ ] INTRODUCTION Hello everyone.My name is don. I am 58 this yr, just an old hippy.I found out last june that I have hep c. I am a geno 1B-86,000 load.I got my hep probably back in the late 60's from using a needle.I am awaiting tx or whatever the doctor advises me.I am not in any pain, but I do experiance weakness, extreme tiredness, and lots of brain fog.I live alone in a new town in kansas, and have no friends or family close by.I like to come here everyday and read what info has been posted. I have learned a lot already.I hope to partisipate and beat the dragon.Thank you.lovedon in kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 hiya Sharon I didnt say I was going to do tx, just that I was going to the doctor. Right now Im doing my own personal brand of tx. ANGEL FOOD CAKE DIET with headmeds on the side. If its good enough for the angels, its got to be twice as good for a mere human like this old ludichrist hippy. You know Im JK dont you? I want to hear what the doc has to say. Then I will decide what to do. I might get a biopsy and some blood work so I know better where my liver stands. As far as tx.....we will see. Im learning everything I can. A well informed hippy can put the best in his pipe, wouldnt you agree? Thank you for your imput. I might call on you for non-tx info. love don in kansas From: Sharon <swarfiel@...>Subject: Re: [ ] INTRODUCTION Date: Tuesday, January 6, 2009, 8:50 PM Hi Don, I"m Sharon. An old hippy gal. Why would you think you need a TX with a genotype of 1b. You viral load is quite low, considering your genotype and your viral load you can manage your fatigue and brain fog with nutrition and herbs, exercise and water. I have been living with Hep C for a long time, and had been on many forums. I fight the dragon and I plan to have a quality life. I would not trust my life to a doctor. We have just one go of it on earth, and doctors have only one path of thought. Just some thoughts. I manage my hepC with herbs, and nutriceuticals. I live a full live, in spite of fatigue, pain, brain fog and hold a good job. I encourage all to consider what is important to you. The treatment route is not for all. -- [ ] INTRODUCTION Hello everyone.My name is don. I am 58 this yr, just an old hippy.I found out last june that I have hep c. I am a geno 1B-86,000 load.I got my hep probably back in the late 60's from using a needle.I am awaiting tx or whatever the doctor advises me.I am not in any pain, but I do experiance weakness, extreme tiredness, and lots of brain fog.I live alone in a new town in kansas, and have no friends or family close by.I like to come here everyday and read what info has been posted. I have learned a lot already.I hope to partisipate and beat the dragon.Thank you.lovedon in kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Wow...that is awesome Don, let me know how the angel thing goes for you...blessings to you in the middle of nowhere. ---- Christ <ludichrist2000@...> wrote: > hiya Sharon > I didnt say I was going to do tx, just that I was going to the doctor. > Right now Im doing my own personal brand of tx. > ANGEL FOOD CAKE DIET with headmeds on the side. > If its good enough for the angels, its got to be twice as good for a mere human like this old ludichrist hippy. >  >  >  >  >  >  >  >  >  >  >  >  > You know Im JK dont you? > I want to hear what the doc has to say. Then I will decide what to do. > I might get a biopsy and some blood work so I know better where my liver stands. > As far as tx.....we will see. Im learning everything I can. > A well informed hippy can put the best in his pipe, wouldnt you agree? > Thank you for your imput. I might call on you for non-tx info. > love > don in kansas > > > > > > From: Sharon <swarfiel@...> > Subject: Re: [ ] INTRODUCTION > > Date: Tuesday, January 6, 2009, 8:50 PM > > > > > > > > > > > > Hi Don, I " m Sharon. An old hippy gal. Why would you think you need a TX with a genotype of 1b. You viral load is quite low, considering your genotype and your viral load you can manage your fatigue and brain fog with nutrition and herbs, exercise and water. I have been living with Hep C for a long time, and had been on many forums. I fight the dragon and I plan to have a quality life. I would not trust my life to a doctor. We have just one go of it on earth, and doctors have only one path of thought. Just some thoughts. >  > I manage my hepC with herbs, and nutriceuticals. I live a full live, in spite of fatigue, pain, brain fog and hold a good job. I encourage all to consider what is important to you. The treatment route is not for all. >  > > -- [ ] INTRODUCTION >  > > Hello everyone. > My name is don. I am 58 this yr, just an old hippy. > I found out last june that I have hep c. I am a geno 1B-86,000 load. > I got my hep probably back in the late 60's from using a needle. > I am awaiting tx or whatever the doctor advises me. > I am not in any pain, but I do experiance weakness, extreme tiredness, > and lots of brain fog. > I live alone in a new town in kansas, and have no friends or family > close by. > I like to come here everyday and read what info has been posted. I have > learned a lot already. > I hope to partisipate and beat the dragon. > Thank you. > love > don in kansas > > >  > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 I'm an old hippy guy, too. I'm not sure why you would discount treatment because of genotype and/or viral load. 1a and 1b are perhaps the most virulent forms of Hep C. Viral load is meaningless except in relation to treatment response. The numbers ebb and flow, especially in the earlier stages of the disease.I agree nutrition is very important with liver disease and, as I've said, I'm open to alternative treatments but I insist they stand up to empirical testing. Most do not, unfortunately.I trust my life to God, and I believe he gave us science and doctors and medicine. Not all of them have a one track mind. Of course, not all doctors graduated at the top of their class, and they put their pants on one leg at a time like the rest of us....While the natural is usually best, there are side effects one needs to consider when looking at herbs etc. They are chemicals too!!!! As a substance abuse counselor I would tell my patients that, while "natural," marijuana is a chemical agent. As are poison ivy, etc....Herbs and nutritionals are not for everyone either. I strongly encourage anyone considering that path to discuss it with a doctor and some expert on the subject. Some alternative treatments can be more harmful than what they are supposed to treat. (They same is true for medical interventions, but doctors and insurance companies do a cost/benefit analysis.)m>> Hi Don, I"m Sharon. An old hippy gal. Why would you think you need a TX> with a genotype of 1b. You viral load is quite low, considering your> genotype and your viral load you can manage your fatigue and brain fog with> nutrition and herbs, exercise and water. I have been living with Hep C for> a long time, and had been on many forums. I fight the dragon and I plan to> have a quality life. I would not trust my life to a doctor. We have just> one go of it on earth, and doctors have only one path of thought. Just some> thoughts. > > I manage my hepC with herbs, and nutriceuticals. I live a full live, in> spite of fatigue, pain, brain fog and hold a good job. I encourage all to> consider what is important to you. The treatment route is not for all. > > -- [ ] INTRODUCTION > > Hello everyone. > My name is don. I am 58 this yr, just an old hippy. > I found out last june that I have hep c. I am a geno 1B-86,000 load. > I got my hep probably back in the late 60's from using a needle. > I am awaiting tx or whatever the doctor advises me. > I am not in any pain, but I do experiance weakness, extreme tiredness, > and lots of brain fog. > I live alone in a new town in kansas, and have no friends or family > close by. > I like to come here everyday and read what info has been posted. I have > learned a lot already. > I hope to partisipate and beat the dragon. > Thank you. > love > don in kansas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 1a and 1b are the least virulent and the least likely to respond, sustained respond to treatment. Where do you get your information from? I have worked in the hospital, doing laboratory testing, including HepC viral loads for over 25 years. I'm not trying to be difficult, I'm just experienced...and unfortunately been learning about this disease for quite sometime. -- [ ] INTRODUCTION > > Hello everyone. > My name is don. I am 58 this yr, just an old hippy. > I found out last june that I have hep c. I am a geno 1B-86,000 load. > I got my hep probably back in the late 60's from using a needle. > I am awaiting tx or whatever the doctor advises me. > I am not in any pain, but I do experiance weakness, extreme tiredness, > and lots of brain fog. > I live alone in a new town in kansas, and have no friends or family > close by. > I like to come here everyday and read what info has been posted. I have > learned a lot already. > I hope to partisipate and beat the dragon. > Thank you. > love > don in kansas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 You’re a lab tech? OK, I’m experienced and educated too. Perhaps we have a disagreement about virulence? From Wikipedia: Virulence (also called pestiferousness) refers to the degree of pathogenicity of an organism, or in other words the relative ability of a pathogen to cause disease. The word virulent, which is the adjective for virulence, derives from the Latin word virulentus, which means " full of poison. " [1] From an ecological point of view, virulence can be defined as the host's parasite-induced loss of fitness. Yes, this means that they are the “least” likely to respond, but there are still good success rates. Acceptable to me anyway. Virulence also refers to the amount of damage they do. All the more reason to treat as soon as possible. I don’t recall where I read it but viral loads certainly ebb and flow. After all, I’ve been virus free… many times. The numbers increase as new virus are hatched and decrease as the body’s natural interferon and other defenses kill some off. Especially in early stages. This doesn’t make sense to you? Medicine should make sense. From NIH: Quantification of HCV RNA in Serum Several methods are available for measuring the concentration or level of virus in serum, which is an indirect assessment of viral load. These methods include a quantitative PCR and a branched DNA (bDNA) test. Unfortunately, these assays are not well standardized, and different methods from different laboratories can provide different results on the same specimen. In addition, serum levels of HCV RNA can vary spontaneously by 3- to 10-fold over time. Nevertheless, when performed carefully, quantitative assays provide important insights into the nature of hepatitis C. Most patients with chronic hepatitis C have levels of HCV RNA (viral load) between 100,000 (105) and 10,000,000 (107) copies per mL. Expressed as IU, these averages are 50,000 to 5 million IU. Viral levels as measured by HCV RNA do not correlate with the severity of the hepatitis or with a poor prognosis (as in HIV infection); but viral load does correlate with the likelihood of a response to antiviral therapy. (emphasis added) Rates of response to a course of peginterferon and ribavirin are higher in patients with low levels of HCV RNA. There are several definitions of a “low level” of HCV RNA, but the usual definition is below 800,000 IU (~ 2 million copies) per mL. In addition, monitoring HCV RNA levels during the early phases of treatment may provide early information on the likelihood of a response. Yet because of the shortcomings of the current assays for HCV RNA level, these tests are not always reliable guides to therapy. m From: [mailto: ] On Behalf Of Sharon Sent: Wednesday, January 07, 2009 7:57 AM Subject: Re: [ ] Re: INTRODUCTION 1a and 1b are the least virulent and the least likely to respond, sustained respond to treatment. Where do you get your information from? I have worked in the hospital, doing laboratory testing, including HepC viral loads for over 25 years. I'm not trying to be difficult, I'm just experienced...and unfortunately been learning about this disease for quite sometime. -- [ ] INTRODUCTION > > Hello everyone. > My name is don. I am 58 this yr, just an old hippy. > I found out last june that I have hep c. I am a geno 1B-86,000 load. > I got my hep probably back in the late 60's from using a needle. > I am awaiting tx or whatever the doctor advises me. > I am not in any pain, but I do experiance weakness, extreme tiredness, > and lots of brain fog. > I live alone in a new town in kansas, and have no friends or family > close by. > I like to come here everyday and read what info has been posted. I have > learned a lot already. > I hope to partisipate and beat the dragon. > Thank you. > love > don in kansas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 People with 1a and 1b can live a long and healthy life, without much damage to their liver as long as they are careful with what they do to their livers. My liver is completely normal after 15 years of infection. Take a 3b, these people can go into liver failure within 5 years, but even an IV high dose of Vitamin C will kill that virus. High virulence, this is my definition of virulence. The only way a 1a will go into cirrhosis is with much liver damage due to outside forces apart from HepC dragon. Including a person immunity. I apologize, I worked all night, but I will find medical articles to back this up. I just have to sleep now. It is very difficult to find treatment for a 1a, I will find the articles...gotta a few of them. I live in Florida and it's 70 degrees outside...I'm thinking about kayaking or riding my bike. Life is too short to waste on interferon....I took it before I knew better, it almost killed me, and left me with fibromyalgia. But I won't let this dragon keep me down. Love much, laugh a lot and live to the fullness, loving God and my human companions God gave me. Life is a gift...much care should be given before listening to some doctors with pharmaceutical agendas..... -- [ ] INTRODUCTION > > Hello everyone. > My name is don. I am 58 this yr, just an old hippy. > I found out last june that I have hep c. I am a geno 1B-86,000 load. > I got my hep probably back in the late 60's from using a needle. > I am awaiting tx or whatever the doctor advises me. > I am not in any pain, but I do experiance weakness, extreme tiredness, > and lots of brain fog. > I live alone in a new town in kansas, and have no friends or family > close by. > I like to come here everyday and read what info has been posted. I have > learned a lot already. > I hope to partisipate and beat the dragon. > Thank you. > love > don in kansas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 Sure- people with geno 1 can live long healthy lives; 50% of people who contract HCV clear it on their own!!! But geno 1a and 1b are the most virulent.Sorry- I don't believe your liver is "completely" normal. Liver enzymes are not a good indicator; mine are currently normal. And I don't believe that vitamin C will kill the virus; that's out and out bs.Course of disease and response to treatment are highly individual. As the NIH said, 1a is the most virulent, and I stick to Wikipedia's definition.Don't bother doing research for me; I prefer to do my own. I'm sorry you had such a hard time with treatment. It's nearly killing me, too. But it's my best chance of clearing the virus. You're entitled to your opinion, I'll stick to scientific fact.Yes, much care should be taken when listening to ANYONE''s advice. This includes those with an anti-medicine agenda such as Scientologists.m>> People with 1a and 1b can live a long and healthy life, without much damage> to their liver as long as they are careful with what they do to their livers> My liver is completely normal after 15 years of infection. Take a 3b,> these people can go into liver failure within 5 years, but even an IV high> dose of Vitamin C will kill that virus. High virulence, this is my> definition of virulence. The only way a 1a will go into cirrhosis is with> much liver damage due to outside forces apart from HepC dragon. Including a> person immunity. > > I apologize, I worked all night, but I will find medical articles to back> this up. I just have to sleep now. > > It is very difficult to find treatment for a 1a, I will find the articles..> gotta a few of them. > > I live in Florida and it's 70 degrees outside...I'm thinking about kayaking> or riding my bike. Life is too short to waste on interferon....I took it> before I knew better, it almost killed me, and left me with fibromyalgia. > But I won't let this dragon keep me down. > > Love much, laugh a lot and live to the fullness, loving God and my human> companions God gave me. Life is a gift...much care should be given before> listening to some doctors with pharmaceutical agendas..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 Sorry, I meant to say it is normal with a large influx of reactive lymphocytes, the last biopsy. I do understand liver enzymes as I run these frequently. Where did you hear 50% clear on their own? Documentation please. -- [ ] Re: INTRODUCTION Sure- people with geno 1 can live long healthy lives; 50% of people who contract HCV clear it on their own!!! But geno 1a and 1b are the most virulent.Sorry- I don't believe your liver is "completely" normal. Liver enzymes are not a good indicator; mine are currently normal. And I don't believe that vitamin C will kill the virus; that's out and out bs.Course of disease and response to treatment are highly individual. As the NIH said, 1a is the most virulent, and I stick to Wikipedia's definition.Don't bother doing research for me; I prefer to do my own. I'm sorry you had such a hard time with treatment. It's nearly killing me, too. But it's my best chance of clearing the virus. You're entitled to your opinion, I'll stick to scientific fact.Yes, much care should be taken when listening to ANYONE''s advice. This includes those with an anti-medicine agenda such as Scientologists.m>> People with 1a and 1b can live a long and healthy life, without much damage> to their liver as long as they are careful with what they do to their livers> My liver is completely normal after 15 years of infection. Take a 3b,> these people can go into liver failure within 5 years, but even an IV high> dose of Vitamin C will kill that virus. High virulence, this is my> definition of virulence. The only way a 1a will go into cirrhosis is with> much liver damage due to outside forces apart from HepC dragon. Including a> person immunity. > > I apologize, I worked all night, but I will find medical articles to back> this up. I just have to sleep now. > > It is very difficult to find treatment for a 1a, I will find the articles..> gotta a few of them. > > I live in Florida and it's 70 degrees outside...I'm thinking about kayaking> or riding my bike. Life is too short to waste on interferon....I took it> before I knew better, it almost killed me, and left me with fibromyalgia. > But I won't let this dragon keep me down. > > Love much, laugh a lot and live to the fullness, loving God and my human> companions God gave me. Life is a gift...much care should be given before> listening to some doctors with pharmaceutical agendas..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 Try the CDC. m From: [mailto: ] On Behalf Of Sharon Sent: Wednesday, January 07, 2009 9:27 AM Subject: Re: [ ] Re: INTRODUCTION Sorry, I meant to say it is normal with a large influx of reactive lymphocytes, the last biopsy. I do understand liver enzymes as I run these frequently. Where did you hear 50% clear on their own? Documentation please. -- [ ] Re: INTRODUCTION Sure- people with geno 1 can live long healthy lives; 50% of people who contract HCV clear it on their own!!! But geno 1a and 1b are the most virulent. Sorry- I don't believe your liver is " completely " normal. Liver enzymes are not a good indicator; mine are currently normal. And I don't believe that vitamin C will kill the virus; that's out and out bs. Course of disease and response to treatment are highly individual. As the NIH said, 1a is the most virulent, and I stick to Wikipedia's definition. Don't bother doing research for me; I prefer to do my own. I'm sorry you had such a hard time with treatment. It's nearly killing me, too. But it's my best chance of clearing the virus. You're entitled to your opinion, I'll stick to scientific fact. Yes, much care should be taken when listening to ANYONE''s advice. This includes those with an anti-medicine agenda such as Scientologists. m > > People with 1a and 1b can live a long and healthy life, without much damage > to their liver as long as they are careful with what they do to their livers > My liver is completely normal after 15 years of infection. Take a 3b, > these people can go into liver failure within 5 years, but even an IV high > dose of Vitamin C will kill that virus. High virulence, this is my > definition of virulence. The only way a 1a will go into cirrhosis is with > much liver damage due to outside forces apart from HepC dragon. Including a > person immunity. > > I apologize, I worked all night, but I will find medical articles to back > this up. I just have to sleep now. > > It is very difficult to find treatment for a 1a, I will find the articles.. > gotta a few of them. > > I live in Florida and it's 70 degrees outside...I'm thinking about kayaking > or riding my bike. Life is too short to waste on interferon....I took it > before I knew better, it almost killed me, and left me with fibromyalgia. > But I won't let this dragon keep me down. > > Love much, laugh a lot and live to the fullness, loving God and my human > companions God gave me. Life is a gift...much care should be given before > listening to some doctors with pharmaceutical agendas..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 I thought you educated yourself about Hep C? Try the CDC, or the NIH or any other reputable source on HCV. m From: [mailto: ] On Behalf Of Sharon Sent: Wednesday, January 07, 2009 9:27 AM Subject: Re: [ ] Re: INTRODUCTION Sorry, I meant to say it is normal with a large influx of reactive lymphocytes, the last biopsy. I do understand liver enzymes as I run these frequently. Where did you hear 50% clear on their own? Documentation please. -- [ ] Re: INTRODUCTION Sure- people with geno 1 can live long healthy lives; 50% of people who contract HCV clear it on their own!!! But geno 1a and 1b are the most virulent. Sorry- I don't believe your liver is " completely " normal. Liver enzymes are not a good indicator; mine are currently normal. And I don't believe that vitamin C will kill the virus; that's out and out bs. Course of disease and response to treatment are highly individual. As the NIH said, 1a is the most virulent, and I stick to Wikipedia's definition. Don't bother doing research for me; I prefer to do my own. I'm sorry you had such a hard time with treatment. It's nearly killing me, too. But it's my best chance of clearing the virus. You're entitled to your opinion, I'll stick to scientific fact. Yes, much care should be taken when listening to ANYONE''s advice. This includes those with an anti-medicine agenda such as Scientologists. m > > People with 1a and 1b can live a long and healthy life, without much damage > to their liver as long as they are careful with what they do to their livers > My liver is completely normal after 15 years of infection. Take a 3b, > these people can go into liver failure within 5 years, but even an IV high > dose of Vitamin C will kill that virus. High virulence, this is my > definition of virulence. The only way a 1a will go into cirrhosis is with > much liver damage due to outside forces apart from HepC dragon. Including a > person immunity. > > I apologize, I worked all night, but I will find medical articles to back > this up. I just have to sleep now. > > It is very difficult to find treatment for a 1a, I will find the articles.. > gotta a few of them. > > I live in Florida and it's 70 degrees outside...I'm thinking about kayaking > or riding my bike. Life is too short to waste on interferon....I took it > before I knew better, it almost killed me, and left me with fibromyalgia. > But I won't let this dragon keep me down. > > Love much, laugh a lot and live to the fullness, loving God and my human > companions God gave me. Life is a gift...much care should be given before > listening to some doctors with pharmaceutical agendas..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 Hi Anne, Nope,there is no way of knowing what path your child will take.You just have to take it one day at a time. Try and remember most people join a support group like this because things are rough going.I have seen MANY people come and go due to very well control,includimg myself.My son was diagnosed just before his 3rd b-day with systemic onset.His SED was 109 21 days after the first symptom.He was slamed hard and fast.We were very proactive and decided to slam old man arthur hard and fast also.It took almost 2 yrs. does have a small percent of permenant damage in his wrists but has made up for it with his fingers.Catching a hard line drive does hurt a bit but at 10 and 118lbs he can do push ups on his fingers because it is more comfortable and he taught himself to do this. Learn all you can and ask questions!!!! This list taught me how to fight and tonite I HATE my 13 yr olds lap top.sorry for all the errors. Hang tough,as Donna would say! Hugs, Becki and 10 systemic ________________________________ From: annebacon64 <annebacon@...> Sent: Sunday, February 15, 2009 10:08:20 PM. Subject: Introduction Hello, My name is Anne and my 9 year old girl was just diagnosed this week with JIA. Although our dr's have been great I am still a bit overwhelmed and unsure of what to expect. Actually, is there even any way to know what to expect? Looking forward to learning from you all! Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 welcome mary! i love hearing about your dog. you may read a post i did a short while ago about therapy dogds, or more so a dog being therqpueitc for me. I cant wait for us to get one, but it looks as if ill be waiting a little while, as im not well enough to take care of one now and my mother doesn't want to take care of it a lot. Im 13 and became miserably ill in oct 07 also, diagnosed sept 08 and on treatment since oct 08. i will be looking forward to hearing from you too! From: snorkmom_fla <snorkmom@...> Subject: [ ] Introduction Date: Friday, June 26, 2009, 3:34 PM Hi, I just joined and wanted to introduce myself. My name is and I live in Fort , CO. I was just diagnosed with Lyme Disease, though it seems I've had it for over 25 years. Lots of misdiagnosis mess and struggling to manage symptoms over the years. I began serious deterioration in Oct 07 which sent me into another round of diagnostic tests. Late in 08, while still looking for a diagnosis (I had received a Fibromyalgia diagnosis but that didn't explain the neurological or breathing problems)I came to the realization that I needed a service dog. In the course of searching for the right dog someone I talked to got very worked up and insisted I get checked for Lyme. Aha and finally, I know what's wrong with me. Fortunately my doctor is open to me pursuing alternative treatments. I found a homeopathic Lyme treatment kit and am on my second round with that. Meanwhile my service dog is responding beautifully to training and is a great help to me. He does balance and brace work and will be trained to pick things up and retrieve things in case I continue to decline. I just found out that the medical terms for my neurological stuff is polyneuropathy and ataxia. When reading up on ataxia I was stunned to see that there was really a medical name for all the weird stuff that I've been struggling with. It felt so good to see that and to know I wasn't just imagining things or over reacting or whatever. I was laid off work in February and am searching. My doc would like to see me go on disability, but I'm not ready to give up yet. Soon I will be moving into subsidized housing for people with disabilities. I'm really looking forward to it as the place I'm renting now has stairs and most days they are hard for me to manage. I'm really looking forward to reading about the issues other people are having and how they're managing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Hi , One thing I can tell you is that injections will not provide relief for stenosis..I still don't understand why they are even doing them for that...well, it's the money. And also, discectomies almost never provide permanent relief, usually within a year the symptoms return. I think that with micro-discectomies this happens even faster. With PT, can I ask how thorough you were with doing your home exercizes? Did you do them everyday? Stenosis can't be fixed with PT obviously, but strengthening the core muscles will help reduce the pain and symptoms. I would not take the Neurontin long if you don't feel strongly that it's helping. It's a relatively new medication which doesn't have a lot of evidence for actually working in back pain...and it's a strong med to be taking if it isn't providing substantial relief. I will tell you that surgery is not the answer for you. As far as the problems you listed, surgery is not appropriate and will not be helpful. You should focus on ways to cope with the pain and getting your body trim and strong. This will be your best defense. I know it sounds cliche, but I have seen it work wonders. For people like us, not being in strong athletic shape is not an option, if you want substantial relief. --- ________________________________ From: <damgalnuna@...> spinal problems Sent: Sunday, July 12, 2009 8:03:18 PM Subject: Introduction Hello, I have been dealing with problems with my back since I was 12 years old. At 12 I had a spinal fusion with Harrington rod implantation. While participating in dance class at 16 years old, while performing a move I felt an incredible pain in my back and down my left leg. I herniated a lumbar disc (I don't remember the level. My orthopedic surgeon removed parts of the rods, thinking they were causing the pain, and that obviously didn't help. Then he referred me to a neurosurgeon who performed a microdiscectomy. That helped a little, but it got worse again within a few months. During college and the years following, my back was still causing me pain, but I was able to manage with just some advil, ice packs, and rest. In 2007 I gave birth to my daughter. Around 15 months later, the pain in my back because increasingly worse, to the point where I could barely walk around and ended up in my primary care doctor's office in tears. I was given tramadol and was sent to PT. I did PT for around 3 months, with limited benefit. The PT also gave me a TENS unit, which does help a bit when I need to be on my feet for a while. Around 3 months ago, my primary care doctor referred me to a physiatrist, who first ordered an MRI. It showed herniated discs/spinal stenosis at L4/L5 and L5/S1. He has performed two nerve root blocks so far, with each only lasting around two weeks. He also added neurontin (900 mg 3x/day) and codeine (as needed) to my meds. My pain is still not under control, and actually seems to be getting worse. I meet with him again in a week and a half, so hopefully he'll have some better suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 , Thanks for your advice. I did do the PT exercises at home, but not always every day. I have a toddler at home, and I spend most of my time taking care of her, and not enough time taking care of myself sometimes. I think the Neurontin is helping a little, but not that much. My doctor mentioned trying Lyrica if the Neurontin didn't work, but that my insurance requires that Neurontin be tried first. The microdiscectomy was performed over ten years ago now. Around nine years ago, I got sick of the doctors and all the medications (I was basically a zombie), so I quit everything and didn't see a doctor again until last fall when the pain suddenly became intolerable. I do need to work on getting more physically fit, but have trouble balancing time issues and pain issues. It's hard to push myself to exercise when I'm in a lot of pain. I'm only 29 years old, so the thought of dealing with this pain for the rest of my life depresses me. I'd just like to get some relief, but I'm not convinced I'll ever get there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Four months ago I was where you are...and I tried PT just one more time. I did with in conjunction with massage and myofascial release. I was able to reduce my pain to the point where I don't have any 95% of the time! that and the Ultram ER I take everyday. It took finding the right PT and my committing myself to doing the exercizes, because I had nothing left. I HAD to want it more than anything. And it worked! You have to get to the point where it's the most important thing to you. It has to be a priority. But you CAN do it!!!! --- ________________________________ From: <damgalnuna@...> spinal problems Sent: Monday, July 13, 2009 10:28:19 AM Subject: Re: Introduction , Thanks for your advice. I did do the PT exercises at home, but not always every day. I have a toddler at home, and I spend most of my time taking care of her, and not enough time taking care of myself sometimes. I think the Neurontin is helping a little, but not that much. My doctor mentioned trying Lyrica if the Neurontin didn't work, but that my insurance requires that Neurontin be tried first. The microdiscectomy was performed over ten years ago now. Around nine years ago, I got sick of the doctors and all the medications (I was basically a zombie), so I quit everything and didn't see a doctor again until last fall when the pain suddenly became intolerable. I do need to work on getting more physically fit, but have trouble balancing time issues and pain issues. It's hard to push myself to exercise when I'm in a lot of pain. I'm only 29 years old, so the thought of dealing with this pain for the rest of my life depresses me. I'd just like to get some relief, but I'm not convinced I'll ever get there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Have you ever heard of Raynaud's Syndrome? There is medication that you can take that relieves some of the circulation problems if you are diagnosed with Raynaud's. You should see a physician because you may be able to lessen your symptoms and get some relief. Good luck to you. From: groupleif <groupleif@...> Subject: Introduction spinal problems Date: Tuesday, September 1, 2009, 3:10 PM I suffer from a major neck injury that happened 8 years ago from lifting weights. While i was doing a hang-clean of about 200 pounds, i heard a loud pop as i felt the bones suddenly shift in my neck on the right side. (I had a weak shoulder at the time due to tendinitis from a sports injury prior.) The result was a pinched nerve which has becoming more and more tight ever since. This has led to many health problems such as indigestion, extreme chemical sensitivities, hypoglycemia, fragile bones and teeth, fatigue, memory loss, and cold intolerance which is the most life-limiting. If its below 80 degrees, cold pain pierces my skin and goes directly to my bones. It doesnt matter how many clothes i put on or blankets i wrap around, my body simply can not keep itself warm. When this happens for an extended period of time i can only think about 2 things, suicide or fleeing into a warmer environment. Fortunately, i have always been able to take refuge in a suitable environment which is why i live in Thailand. Whenever i fall asleep in an awkward position, circulation will start to cut off form the neck down. When this happens my body will force me to wake up as fast as possible. By the time i wake up i am numb and can only move my eyes. I will then use all my strength and force muscles to twitch in my arm taking anywhere from a few seconds to a few minutes. By the time i succeed in moving the rest of my body i am usually out of breath. Im certain i would be permanently paralyzed if i did not wake up in time. Ive only been to chiropractors and never gone to any hospitals so i dont have an in-depth diagnosis. I had one x-ray taken 6 years ago. The doctor said i have a " suplexation " . Leif Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 I have a list on my website here: http://www.naturallythriving.com/basics/cfd.php Hope that helps.. Luv, Debby in San , CA Student: Nutrition Certification and PhD in Psychology Website: http://www.naturallythriving.com Group: curingcandida/ ----- Original Message ---- > From: can_cis > > Hi, I'm new to the group. > I was browsing the files looking for a list of foods approved for the candida > diet but I did not find it. Could someone point me to the right place? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Hi Jen: Welcome to this group. I'm sure Bee will respond to your message soon, but I just wanted to welcome you and make sure you have some important reading material to get you started. All of the health challenges you mentioned are ones that are caused by Candida overgrowth. So you are in the right place! Bee's Candida diet is very different from all other Candida diets out there because she focuses on harnessing our bodies own healing power to create healthy bodies. Many people on this group, myself included, have tried other diets, drugs, and detox plans to get healthy and none of them worked. I have finally found the path to my own health by following Bee's diet and supplement guidelines. I'm sure this diet will help your many issues. There are many folks on this group who share many of your challenges, and they have been able to turn their health around with Bee's diet. But it's important (because this is a self-help program-- with lots of great support!) that you read up on how Bee's diet works and why. So here are some articles to get you started: 1) How to Successfully Overcome Candida http://www.healingnaturallybybee.com/articles/intro2.php 2) Curing Candida, How to Get Started http://www.healingnaturallybybee.com/articles/intro1.php For encouragement and inspiration see these wonderful Success Stories by members of this group: http://www.healingnaturallybybee.com/success/index.php The only way to cure candida: Candida cannot be cured by " killing it off. " It just doesn't work that way. Candida is only cured by building up the immune system, which is done by: 1) Consuming " proper nutrients " (diet plus supplements), 2) Eliminating toxins and foods that feed candida (they also feed bacteria and cancer), 3) Eliminating damaging foods, and 4) Eliminating toxins in general. When the immune system is strong enough it will automatically " make " candida (or any bug, cancer, etc.) change back into the microbe it was before. When you've had a chance to read through the material, you'll see how this diet differs from some of the techniques you mentioned in your email. Welcome!! Marissa (a group moderator) > > Hi, > I am new to this group. I have suffered through self-diagnosed candida symptoms for many years. In the past I've tried cleanses, but because I have serious gastro intestinal issues I have not been able to tolerate any herbal formulas, let alone prescription ones. [i have GERD, gastritis, and am now being checked for gastroparesis] > > I've been able to alleviate certain symptoms by avoiding all sugar, sweetener, and yeast in my diet for the past year or two. However, the moment I eat something with yeast, I seem to get a vaginal irritation and discharge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 > > Hi, > I am new to this group. I have suffered through self-diagnosed candida symptoms for many years. In the past I've tried cleanses, but because I have serious gastro intestinal issues I have not been able to tolerate any herbal formulas, let alone prescription ones. [i have GERD, gastritis, and am now being checked for gastroparesis] +++Hi Jen. Welcome to our group. GERD and gastritis are caused by low stomach acid, not high acid like doctors claim. To understand please read the articles Marissa gave you since there's a section on digestion in my main candida article which explains it. +++Gastroparesis is a weak stomach, so it is very important to build up your overall health with proper diet and supplements which will reconstruct all of the body's cell so they are strong. <snip> Or it could be due to the fact that I've been on and off of proton pump inhibitors which the doctor insists I need for my GERD, but it seems to only help with the reflux but is more trouble than it's worth. One of my immediate family members has Barrett's esphogus so it's really important that I not let the acid get out of hand. +++I've helped many people get off Proton Pump inhibitors by eating sauerkraut, but I believe it is most important you start on this program and follow the recommendations to Improve Digestion. > > Since I have so many things going on, I am not sure how to go about treating it all at once, or doing one condition at a time. Right now I'm severely limited in what I can eat. I was down to only twenty food items that I could tolerate and then they started to bother me a week or two ago, so now I'm on mostly liquids with some solids. So, I'm not sure that I could follow a true Candida diet until I get my stomach working better yet. +++Just start one step at a time, by changing over to this program gradually, even if you are only having liquids and pureeing (blending) some foods - some people do very well on the 9-Day Program too: http://www.healingnaturallybybee.com/articles/dig6.php After reading please get back to us with any questions you have. The best in health, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 Hi : ****Welcome. You are in the right place. > Hi, I am new here. I've been on the candida diet for about two weeks now. I'm 40 years old and I've had illness sinse I was around 20. I had strep, bronchitis and neumonia in my early twenties, which led into chronic fatigue, depression and anxiety. Then I developed food intolerances, one of which was Celiac Disease. I currently have problems relating to IBS, eczema, fibroids, back pain, and chemical sensitivities. **** Many folks have had some of your symptoms on this group. Be sure to check out the Success Stories on Bee's site to get some motivation and inspiration from them. > > I REALLY hope this candida program works! > > It will be hard to stay on this diet for 20 months but I am going to do it. **** Just to make sure you have all the starter info, I'm including the links here: Please ensure you read two important articles so you understand candida, and know what you need to do and why: How to Successfully Overcome Candida http://www.healingnaturallybybee.com/articles/intro2.php Curing Candida, How to Get Started http://www.healingnaturallybybee.com/articles/intro1.php For encouragement and inspiration see these wonderful Success Stories by members of this group: http://www.healingnaturallybybee.com/success/index.php The only way to cure candida: Candida cannot be cured by " killing it off. " It just doesn't work that way. Candida is only cured by building up the immune system, which is done by: Consuming " proper nutrients " (diet plus supplements), Eliminating toxins and foods that feed candida (they also feed bacteria and cancer), Eliminating damaging foods, and Eliminating toxins in general. When the immune system is strong enough it will automatically " make " candida (or any bug, cancer, etc.) change back into the microbe it was before. Welcome to the group! Marissa ( a group moderator) Quote Link to comment Share on other sites More sharing options...
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