Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 > I started the enzymes (specifically no-fenol and peptizyde) on the advice of a friend. He puked twice so I quit, but then read more about it and started up again. He has been on 1 cap of each (or less) for about a week and the stimming is even worse, the giggling is worse, and he has invented a Whole New Stim. Remember that there is a three-week adjustment period/die-off phase for the enzymes. Also note that there's no real need to rush through this and that your child may react differently than others you may read about. We are on AFP Peptizyde, and it has taken almost two months for me to feel confident about the dosing for my 2.5-year-old- son. He CANNOT tolerate ANY dose on an empty stomach, and still doesn't get even a full cap for most meals. For pizza, he definitely needs a full cap. But no more than that. There's also an element of " gut listening " (no pun intended!) going on here. When we started the Zyme Prime, my son's behavior just seemed out of the ordinary from what I'd read to expect. I believe he was having a negative reaction to something in the ZP. When we started the AFP, he still had behavior issues, but they felt more " right. " If you start slowly, you can give yourself better latitude with evaluating the reaction, I think. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 >>If I'm giving too much, do I quit for a week and start slower, or just cut back the dose? Am I giving too little? I would start with 1/2 capsule of ONE of the enzymes, one meal per day, wait a week or so, then go to 1/2 capsule for two meals, then three meals. Then add the other enzyme. Adding No-Fenol start at about 1/8 to 1/4 capsule. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 Blowout, There might be studies out there, but that is not what is important. There are hundreds of favorable testimonials on some of the web sites that deal with Dr. 's protocols. Her ideas are way beyond fascinating, they are honest, thoroughly researched, cures for much of what ails us today. Not only that, some of her ideas are not her own, but come from research done years ago that was ignored, but hold true today, where curing diseases are concerned. Main stream medicine is big business and your onocologist is not going to tell you that something as simple as Dr. 's methods will work. He/she has a vested interest in making money. Many chemo drugs cost pennies to manufacture, are sold for hundreds of dollars to onocologists, who then charge hundreds more to administer. Talk about taking advantage of someone who is ill!! Your doctors are bound by the standard method of care as detailed in the Physicians desk reference, a book written by drug and insurance companies. Can you answer the following questions for me? Beyond a doubt, one of the best ways to fight disease and illness is to have a strong and healthy immune system. Please explain why the main stream thinks that killing off healthy immunity is going to cure cancer? Shouldn't the cure involve building the immune system and just killing the cancer cells? Just how many people does chemo kill? The coverup is that if you die after having chemo, then it is the cancer that killed you. I don't think so! Too many people have refused chemo and did a program to improve their over all health that included getting rid of foreign invaders in the body, and their cancers went away. I personally know two people who were given 6 months or less to live with their cancer. Both of them cured their cancer, just by changing their diet to a much healthier one. They improved their health and their own immune systems did the job it is supposed to do. Another gentleman refused chemo for his lung cancer and was given 3 months to live. He died 7 years later of the cancer. Never changed anything he was doing in the first place, and he continued to smoke! I also know a few that survived chemo, but their treatment made their quality of life unbearable and left them with other health issues. We humans cause most of our own ill health by the diet we ingest, and the unhealthy air and water on this earth and the toxic chemicals we expose ourselves to daily. I am not the healthiest person in the world, but I do try to keep from ingesting anything that is laden with additives, and keep my diet simple. Meat, fish, fresh veggies and fruit, and dairy. I don't eat anything that needs to be manufactured except ice cream. I never eat processed foods, I use water filters in my home, and I use borax and peroxide to clean my house. Those few things will go a long way in my attempt to stay healthy. I don't have cancer, but I damn well know that if I did, I would turn to pioneers like Dr. and others who KNOW HOW TO CURE CANCER, because they understand the root causes of this disease. Dr is a researcher who has made significant discoveries that will forever change the way smart people will prevent or cure diseases without the help of the modern medicine man. She is as appalled as many of us that simple and effective cures are readily available, but governments, medical societies, and insurance companies, stand to lose all they have if people understood how simple, at home treatments can be much more effective than being poisoned by chemo or cut by surgeons. Please use your search engine and do some research on the net to find testimonials and information. Read more books that indicate there is a cure for cancer, try some of the methods yourself, they are all harmless, to see if they help you. If you decide to go with the recommendations of your onocologist, that is your choice to make, but you had better be more informed about your disease than he or she is! If you choose to handle your disease yourself, don't expect your onocologist to be pleased to hear that. Funny, you question whether there have been studies of Dr. 's methods, but have you done the same for the treatment your onocologist has recommended? You will be horrified. Welcome to the list. I hope one day you will be able to tell us how you got well and rid yourself of cancer. Best of luck to you. Aluna. At 08:00 PM 12/11/03 +0000, you wrote: >Hi! I'm new to the list. I joined because I read Dr. 's >book " Cure for All Cancers " and couldn't find anyone locally who >could answer my questions. I found Dr. 's ideas fascinating, >but I'm still a bit skeptical - it seems too simple, especially when >compared to the information I'm getting from my oncologist. Can >anyone on the list point me to some studies that support Dr. 's >theories? > >Thanks in advance, > >Blowout Bob > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 HELLO,I WOULDN'T LET THEM SWIM UNLESS THERE IS SOMEONE WITH THEM THAT KNOWS WHAT TO DO INCASE THEY SHOULD HAVE A SEIZURE.KEPPRA, I HAD BAD LUCK WITH KEPPRA IT MADE ME HAVE MORE SEIZURE'S AND ALSO,MAKE SURE SOMEONE IS STRONG ENOUGH BECAUSE WHEN HAVING A SEIZURE THERE BODY BECOMES DEAD WEIGHT.ALSO MAKE SURE YOU TURN THEM TO THEIR SIDE SO THEY WON'T CHOKE TO DEATH.AS FOR ROLLERBLADING ALWAYS MAKE SURE SOMEONE IS THERE WITH THEM.WHAT IS YOUR CHILD'S NAME? I'LL PRAY!!!!! MOSTLY I THINK IT'S WHEN SOMETHING BOTHER'S THEM OR STRESS WHEN PEOPLE HAVE STUPID FIGHTS THAT WILL CAUSE STRESS AND HERE'S SOME DON'TS DON'T GIVE THEM GRAPEFRUIT OR GRAPEFRUIT JUICE DON'T TRY FORCING THEM TO DO THINGS THAT THEY DON'T WANT TO DO AND DON'T SMOKE AROUND THEM,DON'T GIVE THEM FLOURIDE WATER GIVE THEM DISTILLED WATER.FLOURIDE WATER IS BAD ON THE BRAIN CELLS AND HARMFUL TO PEOPLE WITH EPILEPSY/SEIZURES MAY GOD WATCH OVER YOUR CHILD AND PROTECT HIM/HER WHICH EVER IT MAY BE. OH DON'T LET THEM GET TOO EXCITED OR PLAY VIDEO GAMES FOR A LONG PERIOD OF TIME.TAKE CARE,MARK HOGUE SI <sillouz@...> wrote:I am the mother of a teen who suffers from autism and epilepsy. Being non verbal , he can not communicate with me about his seizure disorder. I have joined this list in the hope that someone could answer some of my questions.........questions that I would ask my son , if he could answer. Please feel free to email me privately if you so wish. 1. This first question is for those who were not or are not controlled , having both petit mal, partial and generalized seizures : On days that you are having partial and absence seizures, are you able to exercise (i.e. swim, jog, go to the gym ) ? 2. Have grand mal seizures affected your speech ? 3. Is any one was KEPPRA ? Did KEPPRA make you gain weight ? 4. Does anyone out there who is not controlled skate or rollerblade regularly ? 5. Does anyone that is mostly controlled through medications, feel that lights or sounds can trigger seizures ? Thanks in advance for your support and help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Welcome to the group! If your child is having any type of seizures, I would make sure that someone was there to watch him if he were to go swimming, jogging or the gym. In fact, I would make sure that someone was always with him whether he's having seizures that day or not because seizures are unpredictable unless they are controlled. My daughter is language/speech impaired, but after a grand mal, her speech becomes slurred and it's harder to understand her. I don't know anything about keppra so this I will leave to someone who knows. For someone who is controlled, I don't see why they couldn't skate or rollerblade. My daughter's EEG showed that she has what is called photosensitivity to flashing lights, which means that flashing lights, TV, video games would trigger her grand mals, so my neuro advised us to make sure that a light was always on whenever the TV was on and to keep her from flashing lights. She doesn't play video games so we're OK there. I hope that I helped some and I wish you all the best. God Bless! Grace > 1. This first question is for those who were not or are not > controlled , having both petit mal, partial and generalized seizures > : > On days that you are having partial and absence seizures, are you > able to exercise (i.e. swim, jog, go to the gym ) ? > > 2. Have grand mal seizures affected your speech ? > > 3. Is any one was KEPPRA ? Did KEPPRA make you gain weight ? > > 4. Does anyone out there who is not controlled skate or rollerblade > regularly ? > > 5. Does anyone that is mostly controlled through medications, feel > that lights or sounds can trigger seizures ? > > Thanks in advance for your support and help. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Thank you Mark for your email and advice. Question: Does sugar and chocolate trigger seizures or is that just a myth. Re: [ ] NEW TO LIST > HELLO,I WOULDN'T LET THEM SWIM UNLESS THERE IS SOMEONE WITH THEM THAT KNOWS WHAT TO DO INCASE THEY SHOULD HAVE A SEIZURE.KEPPRA, I HAD BAD LUCK WITH KEPPRA IT MADE ME HAVE MORE SEIZURE'S AND ALSO,MAKE SURE SOMEONE IS STRONG ENOUGH BECAUSE WHEN HAVING A SEIZURE THERE BODY BECOMES DEAD WEIGHT.ALSO MAKE SURE YOU TURN THEM TO THEIR SIDE SO THEY WON'T CHOKE TO DEATH.AS FOR ROLLERBLADING ALWAYS MAKE SURE SOMEONE IS THERE WITH THEM.WHAT IS YOUR CHILD'S NAME? I'LL PRAY!!!!! MOSTLY I THINK IT'S WHEN SOMETHING BOTHER'S THEM OR STRESS WHEN PEOPLE HAVE STUPID FIGHTS THAT WILL CAUSE STRESS AND HERE'S SOME DON'TS DON'T GIVE THEM GRAPEFRUIT OR GRAPEFRUIT JUICE DON'T TRY FORCING THEM TO DO THINGS THAT THEY DON'T WANT TO DO AND DON'T SMOKE AROUND THEM,DON'T GIVE THEM FLOURIDE WATER GIVE THEM DISTILLED WATER.FLOURIDE WATER IS BAD ON THE BRAIN CELLS AND HARMFUL TO PEOPLE WITH EPILEPSY/SEIZURES MAY GOD WATCH OVER YOUR CHILD AND PROTECT HIM/HER WHICH EVER IT MAY BE. OH DON'T LET THEM GET TOO EXCITED OR > PLAY VIDEO GAMES FOR A LONG PERIOD OF TIME.TAKE CARE,MARK HOGUE > > SI <sillouz@...> wrote:I am the mother of a teen who suffers from autism and epilepsy. > > Being non verbal , he can not communicate with me about his seizure disorder. > > I have joined this list in the hope that someone could answer some of my questions.........questions that I would ask my son , if he could answer. > > Please feel free to email me privately if you so wish. > > 1. This first question is for those who were not or are not controlled , having both petit mal, partial and generalized seizures : > On days that you are having partial and absence seizures, are you able to exercise (i.e. swim, jog, go to the gym ) ? > > 2. Have grand mal seizures affected your speech ? > > 3. Is any one was KEPPRA ? Did KEPPRA make you gain weight ? > > 4. Does anyone out there who is not controlled skate or rollerblade regularly ? > > 5. Does anyone that is mostly controlled through medications, feel that lights or sounds can trigger seizures ? > > Thanks in advance for your support and help. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 also i would keep them away from cokes/soda's if you have a drink for them make sure it doesn't contain aspertaine this is worse than sugar but,i'd limit the sugar to as little as possible. i use to drink alot of pepsi i used to drinkthem for my tention headaches. now,that i've been off of them i feel so much better plus taking sunrider herbal foods has helpped alot since being on sunrider i haven't had any seizures from jan-june i had nearly 700 seizures and since being on sunrider i haven't had any. big improvement would you say?you know if someone want to be well they will do anything.also don't let your child get too hot because if they sweat too much the medicine level drops and can cause seizures.if your child seems stressed get them some lavender and/or valerian them are great for stress i take them everyday just to stay calm.may God watch over all the children and place His Healing Hands upon all of them.IN HIS HOLY NAME I PRAY.AMEN SI <sillouz@...> wrote:Thank you Mark for your email and advice. Question: Does sugar and chocolate trigger seizures or is that just a myth. Re: [ ] NEW TO LIST > HELLO,I WOULDN'T LET THEM SWIM UNLESS THERE IS SOMEONE WITH THEM THAT KNOWS WHAT TO DO INCASE THEY SHOULD HAVE A SEIZURE.KEPPRA, I HAD BAD LUCK WITH KEPPRA IT MADE ME HAVE MORE SEIZURE'S AND ALSO,MAKE SURE SOMEONE IS STRONG ENOUGH BECAUSE WHEN HAVING A SEIZURE THERE BODY BECOMES DEAD WEIGHT.ALSO MAKE SURE YOU TURN THEM TO THEIR SIDE SO THEY WON'T CHOKE TO DEATH.AS FOR ROLLERBLADING ALWAYS MAKE SURE SOMEONE IS THERE WITH THEM.WHAT IS YOUR CHILD'S NAME? I'LL PRAY!!!!! MOSTLY I THINK IT'S WHEN SOMETHING BOTHER'S THEM OR STRESS WHEN PEOPLE HAVE STUPID FIGHTS THAT WILL CAUSE STRESS AND HERE'S SOME DON'TS DON'T GIVE THEM GRAPEFRUIT OR GRAPEFRUIT JUICE DON'T TRY FORCING THEM TO DO THINGS THAT THEY DON'T WANT TO DO AND DON'T SMOKE AROUND THEM,DON'T GIVE THEM FLOURIDE WATER GIVE THEM DISTILLED WATER.FLOURIDE WATER IS BAD ON THE BRAIN CELLS AND HARMFUL TO PEOPLE WITH EPILEPSY/SEIZURES MAY GOD WATCH OVER YOUR CHILD AND PROTECT HIM/HER WHICH EVER IT MAY BE. OH DON'T LET THEM GET TOO EXCITED OR > PLAY VIDEO GAMES FOR A LONG PERIOD OF TIME.TAKE CARE,MARK HOGUE > > SI <sillouz@...> wrote:I am the mother of a teen who suffers from autism and epilepsy. > > Being non verbal , he can not communicate with me about his seizure disorder. > > I have joined this list in the hope that someone could answer some of my questions.........questions that I would ask my son , if he could answer. > > Please feel free to email me privately if you so wish. > > 1. This first question is for those who were not or are not controlled , having both petit mal, partial and generalized seizures : > On days that you are having partial and absence seizures, are you able to exercise (i.e. swim, jog, go to the gym ) ? > > 2. Have grand mal seizures affected your speech ? > > 3. Is any one was KEPPRA ? Did KEPPRA make you gain weight ? > > 4. Does anyone out there who is not controlled skate or rollerblade regularly ? > > 5. Does anyone that is mostly controlled through medications, feel that lights or sounds can trigger seizures ? > > Thanks in advance for your support and help. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Barbara H <barbinlr@...> wrote: Hi all, Just wanted to let everyone know about my son's (11 YO) progress with his vision problems. This is after 16 rounds of chelation. Before he was unable to do the exercises prescribed by his developmental optometrists. These were computer generated exercises that required him to see 3D images. Today for the first time, he was able to see them like everyone else is able to. This is very exciting. I suspect that his problems with depth perception have improved. This seems the case with his basketball playing. This is just what I needed to convince me to keep up the chelation. It has been very hard with the yeast issues. Before I had already seen improvements in his bowel activity and also his energy levels. I have now gone to 3 days on and 11 days off which seems more manageable. Happy New Year!! barb in little rock Hi all, Just wanted to introduce myself. My son Colin is 7 and is moderately autistic. He also has the speech apraxia diagnosis. We started chelating approx. 1 year ago very conservatively. Colin has made gains very slowly. We have just moved from the Chicago area to Northwest Arkansas. (Bentonville) I look forward to sharing with all of you and look forward to gaining some helpful information. Happy New Year!! Kathy Buckley.....Colin's MOM ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Hi romasweb, welcome to the group. If the RA is interfering with your ability to live your life, why not at least investigate medications to treat it? Do you have a rheumatologist? I understand not wanting to take medication, but this is a progressive disease and if yours has progressed it is not likely to stop or get any better. Leaving it untreated for an extended period of time can lead to more severe joint destruction. Joint destruction can be limited or stopped with proper medication. This is important because once you have loss of joints, there is no going back, no cure or treatment for that. Severe joint destruction will permenantly limit your ability to do the things you want to be able to do. The medications available today are nothing like what they had it when you were younger. The side effects are not that bad and it's very possible to have no side effects from most of the drugs. Mine have been minor compared to my life without them, and very managable. Jennie > Hi to everybody here I am new but not new to the problems of RA. > diagnosed at the age of 4 I went cripple for months at a time, > however in the years since I have been lucky because the attacks > have been few and not too severe. In the last couple of years though > it is getting worst with more swollen joints more often. The worst I > find is what I have to give up doing now. I can't seem to be able to > sit around and watch tv all day. I like to sew, knit, crochet and > play the piano but I can't seem to be able to do any of it now and > that is as bad as the pain. it takes away meaning in your life I > find anyway, I don't know how anybody else feels, I am not taking > any meds for it and I will try to stay off them as long as possible > though lately it is very tempting. I am 47 now and I have diabetes, > I walk alot which seems to help but my arms are the worst, I would > like to learn as much as I can about RA. I consider myself lucky > that the attacks aren't all the time and I get times when I can do > things I want to do. I am sure there is alot worst than I am and I > have no right to complain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Hi, welcome to the list. I am new here as well. There are some medications out now, like Vioxx, that actually do seem to help with range-of-motion and inflammation issues. When I was a kid and got it, there was nothing really great out there and I just had to keep taking more and more to get any sort of relief and it tore up my insides so I had to stop. And then I stopped looking at traditional medicine. However, I have now since tried some things including Vioxx and Celebrex. Celebrex I didn't like at all, but Vioxx was all right except it was extremely expensive. So I'm not on it now and can't speak about it wearing off like everything else has for me. They are lots of other medicines too that I see other people talking about on the list, some of which I've tried too, but there seems to be enough discussion on that for you to get the info you would need from here. I can definitely relate to the loss of meaning that you talk about. Music was how I expressed myself and how I dealt with all sorts of things and how I received, in many ways, from others as well. When it got to the point that I just couldn't do it anymore, I was devastated. I haven't really recovered from that and am still looking for a new vocation. I wouldn't worry about " a right to complain " . Pain is not a competition and all you know about someone's pain is what they share anyway. So somebody could have lots of conditions and things and other issues and just talk about one thing or someone could have one thing but it affects them very strongly - it just doesn't matter how you " stack up " . I've been in situations where with the variety of conditions I have or for some specific condition I'm considered " the worst of the bunch " and in others where there is somebody worse than me in one area and I'm worse than them in another and I find it very non-constructive. It's isolating to have to put it on a scale like that because you can either feel unworthy to be discussing your pain or feel like you have so much that you can't discuss it with anybody without them understanding. So what I try to do is take each situation as it comes and talk about what I need to talk about or what someone else needs to talk about and let all the other people worry about categorizing if it is important to them. I'd rather find the common ground points - of health, of pain, of healing, of whatever, than focusing on the differences or try to one-up anybody or worry that I shouldn't be talking. Sorry for the ramble...going to go hide now.... BCNU heather romasweb <rl-hl@...> wrote: Hi to everybody here I am new but not new to the problems of RA. diagnosed at the age of 4 I went cripple for months at a time, however in the years since I have been lucky because the attacks have been few and not too severe. In the last couple of years though it is getting worst with more swollen joints more often. The worst I find is what I have to give up doing now. I can't seem to be able to sit around and watch tv all day. I like to sew, knit, crochet and play the piano but I can't seem to be able to do any of it now and that is as bad as the pain. it takes away meaning in your life I find anyway, I don't know how anybody else feels, I am not taking any meds for it and I will try to stay off them as long as possible though lately it is very tempting. I am 47 now and I have diabetes, I walk alot which seems to help but my arms are the worst, I would like to learn as much as I can about RA. I consider myself lucky that the attacks aren't all the time and I get times when I can do things I want to do. I am sure there is alot worst than I am and I have no right to complain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Hi , For us, the neurologist was a TOTAL waste of time, basically she told us to live with it, do some therapy, some back half way thru 1st grade and then evaluate to see if he needed some meds to deal with attention issues, no thank you.. We took our son to pediatric allergist/immunologist that speciallizes in metabolic disorders. Well that was back in May, he ran some blood tests, (the difference here being) he knew HOW to interpret what they meant.When our pediatrican looked at his blood work, he said interpreting it was beyond his knowledge base, he said I know what abnormalities mean, but over-all imbalances, and how to treat each and the interplay one has with the other.Allergist/immunologist put our son on some supplements and we have not looked back. For us it put our son on his way, he now is the top reader in 1st grade, because of his phenominal memory, can add 2 digit numbers in his head, his speech is age appropriate, and the hypotonia is none existent, still improving. We also started the gf/cf in May, haven't had to do the SCD because of the tremendous improvement just doing gf/cf. If you want to e-mail me off list on what we did I would glad to help, Colleen > Hi. I just discovered this list today and am very excited about it. My 5 year old son, Zachary, was diagnosed on the mild end of the > autism spectrum 2 years ago. We've been on the gfcf & SCD diets > since then and Zachary was evaluated this summer. It was determined > that there were no traces of autism to be found. Hooray! However, > speech has always been his biggest issue and it still is. He has > delays with his expressive language and with his listening > comprehension. > > I just started Zachary on Carnaware yesterday and am waiting to see > if we have any results. I am also looking into the mood-Bell > progam. Zachary is severely allergic to fish or I would definitely > want to try some of the EFA's. > > I would LOVE to hear any feedback or advice about what people have > found to be most successful with getting their children's language as > normal as possible. The only evaluations we have had done have been > by a developmental pediatrician and SLP's. I have been wondering > lately whether we should consider seeing a neurologist or a metabolic > doctor? Don't know how helpful it would be. Again, any feedback > would be appreciated. > > Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hi Joyce Mazzei’s Pharmacy in Eastwood (Sydney) usually carries them, but are out of stock at the moment. It costs less to purchase them on-line. However, if you’re wanting them to be given at school / kindy /etc, you’ll need a pharmacy label on them which gives the doctor’s directions on it. Mazzei’s will do this for you. You just have to get your doctor then to write the letter:-) If you want more info, just email me privately :-) new to list Hi there, I just joined this list today and have a question. I've been reading about the enzymes and want to try them with my 7yr old foster child who has severe autism. Does anyone know if I can get them in Australia or what I would have to do to get them shipped in from USA? thanks, Joyce D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Welcome to the list. You're in the right place. Does you child have any mercury amalgam dental fillings? Did your child have vaccines? Does he eat fish? Consider getting a DDI (Doctor's Data, Inc) hair analysis (for both toxic and essential elements) and applying the counting rules. If you can't get a doctor to order the test, you can get it through DLS (Direct Lab Services). The FAQs of this list are/is a good place to start. S <tt> <BR> Hello! We have a 9.5 year old with Autism PDD-nos, Auditory <BR> Processing disorder, and sensory issues. We are looking <BR> into any possible mercury connection.<BR> <BR> cindy<BR> <BR> <BR> <BR> </tt> <br><br> <tt> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Hi Nina, Welcome to the group, but sorry that you have so many health problems. This is a very supportive bunch of people, and a and , our moderators, keep us educated about RA and other autoimmune diseases. I am on Enbrel, and it's working very well to keep my RA in check. I'm also on Bextra, which helps out a lot, too. As I recall, one of our members applied to get Enbrel through Medicare. Turned out that it would still be a considerable amount of money out of his pocket, so that he still could not afford it. Maybe he'll see this and speak up. Let us know how it goes. Sue On Tuesday, March 15, 2005, at 03:51 PM, Nina wrote: > > The doc wants to put me on Enbrel. I have applied to get Medicare to > pay > for it. Can't possibly afford it otherwise. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Nina, welcome to the group. I work in Dallas and live east of Dallas. Looking forward to getting to know you! Jane > > Hello, I'm new to the group as of this morning. I was recently diagnosed > with RA. In addition I have Sjogren's Syndrome, Primary Biliary Cirrhosis, > Fibro, COPD and possibly Lupus (no positive blood test yet, though the doc > thinks I have it). > > The doc wants to put me on Enbrel. I have applied to get Medicare to pay > for it. Can't possibly afford it otherwise. He was thinking of giving me > Methotrexate, but because of the PBC (autoimmune liver disease) he is > concerned about the effects on my liver. Currently I take Plaquenil, > Prednisone and Darvocet. > > I am 53, married for 34 years and have one daughter. I live in North Texas > in the country and have many animals (9 dogs and a bunch of farm critters). > > Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 ----- Original Message ----- From: JANE > Nina, welcome to the group. I work in Dallas and live east of Dallas. Looking forward to getting to know you! Thanks for the welcome! I'm abut 90 miles North of Dallas, almost in Oklahoma. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 ----- Original Message ----- From: Sue > Welcome to the group, but sorry that you have so many health problems. This is a very supportive bunch of people, and a and , our moderators, keep us educated about RA and other autoimmune diseases. Thanks for the welcome! Every time I go to the rheumatologist I expect the other shoe to drop. Seems like every time I go, they add a new diagnosis. Now he's talking Lupus, though the tests do not show positive (yet). He's talking " mixed connective tissue disease " since so many of my diseases overlap. > I am on Enbrel, and it's working very well to keep my RA in check. I'm also on Bextra, which helps out a lot, too. I have two major problems that keep me from getting relief. One is the primary biliary cirrhosis (autoimmune which destroys the bile ducts) and I am allergic to NSAIDs (break me out in hives from head to foot). So my poor doctors just stand there and scratch their heads and say they aren't sure what to do. > As I recall, one of our members applied to get Enbrel through Medicare. Turned out that it would still be a considerable amount of money out of his pocket, so that he still could not afford it. Maybe he'll see this and speak up. My daughter has a young friend who could not get it through Medicare, but gets it free from the manufacturer. So I have asked the Enbrel people to include an application to get it through them, in case the Medicare doesn't pan out. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Hi Nina, welcome to the group, glad your here. I'm sorry about your dx, and the difficulties your having. I hope that the Medicare comes in for you, and they can get you on Enbrel. I have heard many good things about Enbrel. I live in OK, so not too far from you. I love animals too, would have them all if I could. You take care, and know that I'm here for you, hugs Tawny > > Hello, I'm new to the group as of this morning. I was recently diagnosed > with RA. In addition I have Sjogren's Syndrome, Primary Biliary Cirrhosis, > Fibro, COPD and possibly Lupus (no positive blood test yet, though the doc > thinks I have it). > > The doc wants to put me on Enbrel. I have applied to get Medicare to pay > for it. Can't possibly afford it otherwise. He was thinking of giving me > Methotrexate, but because of the PBC (autoimmune liver disease) he is > concerned about the effects on my liver. Currently I take Plaquenil, > Prednisone and Darvocet. > > I am 53, married for 34 years and have one daughter. I live in North Texas > in the country and have many animals (9 dogs and a bunch of farm critters). > > Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 I'm glad you have a backup plan, Nina. Hope you can soon try Enbrel and that it puts your RA in remission. Sue On Wednesday, March 16, 2005, at 01:36 PM, Nina wrote: > > My daughter has a young friend who could not get it through Medicare, > but gets it free from the manufacturer. So I have asked the Enbrel > people to include an application to get it through them, in case the > Medicare doesn't pan out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 ----- Original Message ----- From: Sue > I'm glad you have a backup plan, Nina. Hope you can soon try Enbrel and that it puts your RA in remission. Sue When I still worked, my boss said I was like a boy scout, always prepared for anything. LOL Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 I'd certainly like to know how she got the Enbrel from the manufacturer. I've looked for ways, but haven't found any. It would certainly be a blessing for a few of us. Dennis > On Wednesday, March 16, 2005, at 01:36 PM, Nina wrote: >> >> My daughter has a young friend who could not get it through Medicare, >> but gets it free from the manufacturer. So I have asked the Enbrel >> people to include an application to get it through them, in case the >> Medicare doesn't pan out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 ----- Original Message ----- From: Dennis W > I'd certainly like to know how she got the Enbrel from the manufacturer. I've looked for ways, but haven't found any. It would certainly be a blessing for a few of us. My doctor told me that if Medicare wouldn't pay for it, there were other ways to get it. If it comes to that, I'll let you know what I find out. You couldn't get Medicare to pay for yours? Have you checked here: http://www.needymeds.com/indices/brandname.shtml#E It lists Enbrel. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Hi, Nina. I am new to the group, too. I have scleroderma, sjorgrens, pulmonary hypertension. I was diagnosis about 5 years ago. I have ulcers on my fingers and i also had to have the tip of my middle right hand finger cut off. I am 59 years old, married 40 years this year with 4 children and 5 grandchildren. Does anyone in this group have scleroderma. Carolyn JANE <janeatregis@...> wrote: Nina, welcome to the group. I work in Dallas and live east of Dallas. Looking forward to getting to know you! Jane > > Hello, I'm new to the group as of this morning. I was recently diagnosed > with RA. In addition I have Sjogren's Syndrome, Primary Biliary Cirrhosis, > Fibro, COPD and possibly Lupus (no positive blood test yet, though the doc > thinks I have it). > > The doc wants to put me on Enbrel. I have applied to get Medicare to pay > for it. Can't possibly afford it otherwise. He was thinking of giving me > Methotrexate, but because of the PBC (autoimmune liver disease) he is > concerned about the effects on my liver. Currently I take Plaquenil, > Prednisone and Darvocet. > > I am 53, married for 34 years and have one daughter. I live in North Texas > in the country and have many animals (9 dogs and a bunch of farm critters). > > Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Welcome to the Group Deb. I just found out recently that our now two year old son has Autism. Everyone in this group has been great, I just joined recently as well. I Hope to get to know you and your family better and like everyone else in this group. Thanks - TM DH ; Married 5 years and Still Going Strong Proud Parents Of: DS; Jonathyn b/ 03-13-03 @ 37 wks Our Miracle www.babiesonline.com/babies/j/jonathyn DD; Kaitlyn b/s 03-21-02 @ 38 wks (Hypercoiled Cord) Angel; M/C 01-30-01 @ 9 wks (D & C) DD; Shirley Marie b/s 06-07-00 @ 24 wks (Hypercoiled Cord) Mommy & Daddy, LOVES & MISSES their Girls! ^I^ ^I^ " I know God won't give me anything I can't handle I just wish he didn't trust me so much " -Mother " A moment in my arms, forever in my heart " " Always Loved and Never Forgotten " When You Lose A Parent You Lose You Past When You Lose A Spouse You Lose Your Present When You Lose A Child You Lose Your Future New to list Hi, I'm new to the list! My son is 6 and has been SCD for 11 months. We started Houston Enzymes 3 months into SCD and found them very helpful, but one of my questions is the dosing, when to use them, how much to use of them... etc... Our son is small for his age, very small. He has a lot of medical issues, and is 28 lbs., 38 " . He has a lot of oral sensitivities as many of our kids do, and eats purees and soft foods mostly so it's easy to hide the enzymes in his food! We have a lot of trouble getting protein into him. We also use Acidophillus and SCD compliant almond yogurt. Our son has a major problem with yeast that comes and goes. Right now he is on a course of Diflucan. I'd love to hear any advice from others on how to help him more with this issue too. The main reason we started SCD in the first place was severe, chronic constipation and bloating. It was so bad he required rx laxatives every day and still would not go for 2 weeks at a time. He is dx with slow motility, severe reflux and delayed gastric emptying. Thanks for any advice! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 >>Our son has a major problem with yeast > that comes and goes. Right now he is on a course of Diflucan. I'd love > to hear any advice from others on how to help him more with this issue > too. The main reason we started SCD in the first place was severe, > chronic constipation and bloating. Yeast ideas http://www.danasview.net/yeast.htm Constipation ideas http://www.danasview.net/constip.htm Dana Quote Link to comment Share on other sites More sharing options...
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