Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Hi albiecarol@... wrote: > Hi all, > > Been lurking around for a few weeks now (since November). Mom to three yo > diagnosed in November moderately autistic. We are planning on > starting him on Super Nu Thera next week from Kirkman...wondering if anyone > has had any experience good/bad with this supplement. We had to watch out for some of their flavoring elements (allergy issues) and which ones have what in them since we give or son fish oil (didnt want too much A and D) but other than that I have liked them. I would say the one with p5p definetely gives him a little more pep but thats something he needed. I wouldnt say he was hyper from it. I found Kirkmans a good way to get the B vitamins and somewhat more convienent than getting everything myself and making it (because of my son's allergies). It was always hard to get him to take anything with B in it. I still give him a little more Calcium, Zinc and Magnesium malate by other supplements than just the Kirkmans. They only complaint I have..., it's a shame that make it so damn expensive! Take a hair sample now before supplementing him. You'll get a better idea of what he needs although what shows up in the hair isn't always " recent " . When you wash his hair before taking a sample note any metals in the ingredients it may contain (such as Titanium). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 Well, it is hard to compare measurements. You should go by the look, shape, and feel of your baby's head. You can look at some Severity Assessment Charts at http://www.cranialtech.com/medicalinfo/identifyplagio.html and also in our FILES section, at the bottom there is a Decision Tree that could help you. Natasha --- In Plagiocephaly , " kakie5 " <kseyfried@c...> wrote: > Hello All. I'm new here and have a question. Our 8 month old has > some flatness on the back left side of his head. I am wondering how > misshapen a head should be in order for the helmet to be a good > idea. I'm sure if it's off by just a tiny bit, then one probably > wouldn't go for the helmet, but is there a cutoff at some point? > What were some of your measurements or cutoffs?? Just trying to see > if our baby's head is mild or moderate and trying to decide if we > should do anything. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 Natasha is right about assessing the look, shape and feel in addition to the measurements. Have you talked to your pediatrician about it? Also, if you are concerned you might want to make an appointment with a specialist or Cranial Technologies (CT). You don't need a referral to go to CT and they will provide a free evaluation and give you an honest assessment. If they don't think it's severe enough they will let you know. What area are you in? If you go to their website you can look at their locations and see if they have one close to you. www.cranialtech.com Good Luck, Dianna Mom to DOC Band 9/13 plagio/brachy In Plagiocephaly , " Natasha Gubash " <ngubash@y...> wrote: > > Well, it is hard to compare measurements. You should go by the > look, shape, and feel of your baby's head. You can look at some > Severity Assessment Charts at > http://www.cranialtech.com/medicalinfo/identifyplagio.html and also > in our FILES section, at the bottom there is a Decision Tree that > could help you. > Natasha > > > Hello All. I'm new here and have a question. Our 8 month old has > > some flatness on the back left side of his head. I am wondering > how > > misshapen a head should be in order for the helmet to be a good > > idea. I'm sure if it's off by just a tiny bit, then one probably > > wouldn't go for the helmet, but is there a cutoff at some point? > > What were some of your measurements or cutoffs?? Just trying to > see > > if our baby's head is mild or moderate and trying to decide if we > > should do anything. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Hi, Adding on to previous posters. The severity charts are great!! If you would like to put some numbers with the charts you can use my na as a comparison. She has pics in the DOC Band B & A section. She had traditional plagio. She was 11mm cranial vault (think X across the top of the head) and 9 mm ear assymetry (one ear was 9 mm closer to her eye socket than the other). She completed treatment at 3 mm cranial and 4 mm ear after 2 DOC bands and 4 months of treatment. I know some insurance companies use 6 mm assymetry in any one measurement as their guideline, others use 12 mm. I always got the impression <6 mm was mild, 6-15 mm was moderate and >15 mm was severe. This is not a general guideline anywhere just what I have picked up on. The average person has 2-3 mm while the general population (~97% will have less than ~6mm). Measurements can be somewhat subjective because it's hard to get the same spot everytime especially on a moving child. I believe any measurement could be off by +/- 1 mm. mom to na DOC Grad 2/04 SC > Hello All. I'm new here and have a question. Our 8 month old has > some flatness on the back left side of his head. I am wondering how > misshapen a head should be in order for the helmet to be a good > idea. I'm sure if it's off by just a tiny bit, then one probably > wouldn't go for the helmet, but is there a cutoff at some point? > What were some of your measurements or cutoffs?? Just trying to see > if our baby's head is mild or moderate and trying to decide if we > should do anything. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Hi. About a year ago I figured out that a number of the symptoms I was having (fatigue, mental confusion, sinus problems, blepharitis) were worse on a high-sugar diet and would temporarily clear up on a low-carb diet. This led to self-diagnose of yeast overgrowth as a result of 3 years of antibiotic use that I had for acne about 10 years ago. In the last year I have continued on anti-candida diet and used anti- fungals (nystatin, diflucan, sporanox) but things only improve temporarily and then come back perhaps worse than before. Also I have chronic pain in my neck and hips that actually seems to get worse when on the diet and drugs. Recently I discovered the protocol of a researcher that I don't think we're allowed to mention in posts, and I am very intrigued by his research and protocal. However, I understand that this group was started by folks who have diverged from the theories of that researcher. I am hoping that someone could give me a summary of the main points of disagreement with that researcher. Is there a different protocol or specific changes to his protocol that this group recommends following? Thanks! - Russ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Dear Russel If there is a consensus, it probably is that everyone is unique and needs to address his/her own symptoms with the tools which are available. Sounds bloody pessimistic but when you have read a couple of thousand of the backfiles you will see what I mean. There are often enormous financial barriers between patient and treatment. There are also enormous communication barriers between patient and treating duc. Any patient who has a physician who will listen rationally to a patients research experiences let alone a comprehensive and complete history is blessed. Regards Windsor [infections] Re: Newbie Question > is there a consensus opinion on an alternative treatment/cure? > > thanks, > > - Russ > > > > > > > > Hi. About a year ago I figured out that a number of the > symptoms > > I > > > was having (fatigue, mental confusion, sinus problems, > > blepharitis) > > > were worse on a high-sugar diet and would temporarily clear up > on > > a > > > low-carb diet. This led to self-diagnose of yeast overgrowth as > a > > > result of 3 years of antibiotic use that I had for acne about 10 > > > years ago. > > > > > > In the last year I have continued on anti-candida diet and used > > anti- > > > fungals (nystatin, diflucan, sporanox) but things only improve > > > temporarily and then come back perhaps worse than before. Also > I > > > have chronic pain in my neck and hips that actually seems to get > > > worse when on the diet and drugs. > > > > > > Recently I discovered the protocol of a researcher that I don't > > > think we're allowed to mention in posts, and I am very intrigued > > by > > > his research and protocal. However, I understand that this > group > > > was started by folks who have diverged from the theories of that > > > researcher. > > > > > > I am hoping that someone could give me a summary of the main > > points > > > of disagreement with that researcher. Is there a different > > protocol > > > or specific changes to his protocol that this group recommends > > > following? > > > > > > Thanks! > > > > > > - Russ > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 I don't know if the stuff you mentioned is any good but I do believe that what you eat has a huge bearing on how much you slime.I just think that you should sort of get to know yourself-and what needs doing as everyone is different and this to me determines the therapy path you should go onto. I am a fibro sufferer(no longer) and that bitch of an ilness will alway's scream out at you when your doing things wrong or right. > > > > > > > > > > Hi. About a year ago I figured out that a number of the > > > symptoms > > > > I > > > > > was having (fatigue, mental confusion, sinus problems, > > > > blepharitis) > > > > > were worse on a high-sugar diet and would temporarily clear > up > > > on > > > > a > > > > > low-carb diet. This led to self-diagnose of yeast overgrowth > > as > > > a > > > > > result of 3 years of antibiotic use that I had for acne about > > 10 > > > > > years ago. > > > > > > > > > > In the last year I have continued on anti-candida diet and > > used > > > > anti- > > > > > fungals (nystatin, diflucan, sporanox) but things only > improve > > > > > temporarily and then come back perhaps worse than before. > > Also > > > I > > > > > have chronic pain in my neck and hips that actually seems to > > get > > > > > worse when on the diet and drugs. > > > > > > > > > > Recently I discovered the protocol of a researcher that I > > don't > > > > > think we're allowed to mention in posts, and I am very > > intrigued > > > > by > > > > > his research and protocal. However, I understand that this > > > group > > > > > was started by folks who have diverged from the theories of > > that > > > > > researcher. > > > > > > > > > > I am hoping that someone could give me a summary of the main > > > > points > > > > > of disagreement with that researcher. Is there a different > > > > protocol > > > > > or specific changes to his protocol that this group > recommends > > > > > following? > > > > > > > > > > Thanks! > > > > > > > > > > - Russ > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Russ, Sounds like we're in similar boats. If we're talking about the same protocol, then here are some of the reasons we no longer discuss it. People with negative reactions to the protocol are censored or banned. All (or next to all) negative reactions, some really severe, are dismissed as herxheimer, even when there's lots of medical documentation pointing to the contrary. Expressing concern or questioning the creator over these reactions gets you banned from the discussions. Plus, people with chronic infections are told that there is only a certain group of antibiotics to take, and they must be taken in low doses, which goes against every sensible infectious disease protocol and doc on the planet, not to mention our own experience. Different bugs and different people require different drugs. Illnesses like osteomyelitis (rotting bone), which I have, are not going to be eradicated by 25 mg of minocycline every other day. Wouldn't orthopedic docs be happy if it could? The biggest reason we don't mention specific names is because when we did, people end up in lawsuits. I got sued for " libel " . I'm not the first by any means. Fortunately, the case was dismissed, but I could have lost by default if I hadn't had an attorney show up on my behalf. The suit was filed in a town 5 hours away from me. The plaintiff got the judge to grant an " emergency status " , giving me one day to find counsel. This was intended to be a slam dunk win by default, since he doubted I would ever make it to court, considering how sick I was. But fortunately, I found a great attorney in the plaintiff's home town. Even though the case was dismissed, it cost me a great deal of money and stress. It happened when I was very sick, and right during the holidays. So this gives you an idea of what you could be dealing with if you decide to do the protocol. The worst part of it is that free speech is being successfully squelched, because most people are afraid of getting sued. And he does not hesitate to use the legal system. penny > > Hi. About a year ago I figured out that a number of the symptoms I > was having (fatigue, mental confusion, sinus problems, blepharitis) > were worse on a high-sugar diet and would temporarily clear up on a > low-carb diet. This led to self-diagnose of yeast overgrowth as a > result of 3 years of antibiotic use that I had for acne about 10 > years ago. > > In the last year I have continued on anti-candida diet and used anti- > fungals (nystatin, diflucan, sporanox) but things only improve > temporarily and then come back perhaps worse than before. Also I > have chronic pain in my neck and hips that actually seems to get > worse when on the diet and drugs. > > Recently I discovered the protocol of a researcher that I don't > think we're allowed to mention in posts, and I am very intrigued by > his research and protocal. However, I understand that this group > was started by folks who have diverged from the theories of that > researcher. > > I am hoping that someone could give me a summary of the main points > of disagreement with that researcher. Is there a different protocol > or specific changes to his protocol that this group recommends > following? > > Thanks! > > - Russ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Russ, Please see my other post. Now I'll share my experience with the MP. Personally, I take Benicar, have for over 2 years. I've found it to be immensely helpful for my inflammation, although lately not as effective. Still effective enough for me to fork over the $200 a month for it, because it relieves a whole bunch of my symptoms. There are some (still to be published) theories about why Benicar works for some and doesn't work for others, but because of the blow back on the MP protocol, Benicar's gotten a really bad rap. I can take most antibiotics without problems, but I get deathly sick on minocycline, and I've tried it numerous times in numerous ways, i.v. and oral. I finally did the research and learned that minocycline affects a number of people this way, and it has nothing to do with " herxing " . I do take Zithromax sometimes. Bactrim was another tough drug for me, gave me visual hallucinations, a listed side effect. And these are the drugs used on the MP. Deviations from the protocol are met with severe disapproval. As I said before, I've found antibiotics and Benicar to be a good combination. I do think inflammation is a huge issue here, and I do think Benicar has amazing potential in this area of treatment. But there's a long ways to go to figure out what exactly is going on and why it works for some, doesn't work for others, and how to know if the initial adjustment period is truly an adjustment, or is a sign that you're not a good candidate. As far as I'm concerned, the abx portion of the protocol is ridiculous. penny > > Hi. About a year ago I figured out that a number of the symptoms I > was having (fatigue, mental confusion, sinus problems, blepharitis) > were worse on a high-sugar diet and would temporarily clear up on a > low-carb diet. This led to self-diagnose of yeast overgrowth as a > result of 3 years of antibiotic use that I had for acne about 10 > years ago. > > In the last year I have continued on anti-candida diet and used anti- > fungals (nystatin, diflucan, sporanox) but things only improve > temporarily and then come back perhaps worse than before. Also I > have chronic pain in my neck and hips that actually seems to get > worse when on the diet and drugs. > > Recently I discovered the protocol of a researcher that I don't > think we're allowed to mention in posts, and I am very intrigued by > his research and protocal. However, I understand that this group > was started by folks who have diverged from the theories of that > researcher. > > I am hoping that someone could give me a summary of the main points > of disagreement with that researcher. Is there a different protocol > or specific changes to his protocol that this group recommends > following? > > Thanks! > > - Russ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 I guess I would just ask, why do you think antagonizing vit D receptor signaling and angiotensin II signaling are effective for the treatment of these diseases? What exactly is the evidence? Thats what I finally figured out how to ask myself after 2 months of reading that stuff (Sept and Oct 2003). > > Hi. About a year ago I figured out that a number of the symptoms I > was having (fatigue, mental confusion, sinus problems, blepharitis) > were worse on a high-sugar diet and would temporarily clear up on a > low-carb diet. This led to self-diagnose of yeast overgrowth as a > result of 3 years of antibiotic use that I had for acne about 10 > years ago. > > In the last year I have continued on anti-candida diet and used anti- > fungals (nystatin, diflucan, sporanox) but things only improve > temporarily and then come back perhaps worse than before. Also I > have chronic pain in my neck and hips that actually seems to get > worse when on the diet and drugs. > > Recently I discovered the protocol of a researcher that I don't > think we're allowed to mention in posts, and I am very intrigued by > his research and protocal. However, I understand that this group > was started by folks who have diverged from the theories of that > researcher. > > I am hoping that someone could give me a summary of the main points > of disagreement with that researcher. Is there a different protocol > or specific changes to his protocol that this group recommends > following? > > Thanks! > > - Russ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 > I finally figured out how to ask myself after 2 months of reading > that stuff (Sept and Oct 2003). ....by which I of course meant 2004, not 2003. I wanted to add, at this point it seems like, why not focus on actual patient outcomes. Bear in mind that not everyone doing " that " was ever a poster at " that " site, and that for various reasons its possible reports carried on other sites might not be as positive. Hence I would consider it important to search the web (google or whatever) for further patient reports. I dont know if there are reports on usenet (groups.google.com) but one can look. There definitely were reports on the lymenet.org medical forum; this forum is sometimes pruned but I would guess these threads are probably preserved. There may have been some reports at accidentalpatient but I dont know; I dont read there, or co-cure, or immunesupport. Those places are all searchable I think. are " semi- searchable, " especially if you have a good internet connection. Its time-consuming. The early archives of this list seem to have been deleted by , in response to a third-party request I would assume. eurolyme and have a few patient reports on this somewhere back there. As advocates of " that " might point out, to be fair you do have to examine peoples compliance with the regime when you evaluate their reports. To the extent possible. I would say, dont rely much on summaries of patient outcomes, read patient reports, firsthand. I once believed uncritically patient outcome summaries that I read " there, " and I later felt it foolish to have done so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2009 Report Share Posted June 10, 2009 , Welcome to the group. Your husband is very lucky to have a supportive wife. His doctor will monitor Methotrexate's effect on his liver by ordering blood work often. If the liver enzymes are elevated too much, he can stop it and try something else. I believe there are rheumatologists who do the antibiotic therapy, but not all do. I have not heard anything about not taking Celebrex with MTX. Sie On Jun 10, 2009, at 9:24 AM, laurenh33 wrote: > Hi all, > I haven't been on this group long and haven't had a lot of time to > read > everything I should. My husband is 44 years old and was recently > diagnosed with > RA. Since then they put him on Metho (he just took his 4th dose), > prednisone(which they don't want to give him but it helps him), > Celebrex, and > folic acid. He is also taking tramadol for the pain, which doesn't > do him much > good and lyrica. The metho gives him terrible pain and fatigue the > next day. I > Have read bad things about the methotrexate with regards to liver > problems. I > also read that you shouldn't take Celebrex with the methotrexate. > Do they mean > on the same day or just not at all? Also, I got a book from the > library that > had very good reviews. IT is called the New ARthritis breakthrough > by Henry > Scammell. It is an antibiotic therapy in which Minocyline is > given. Has anyone > tried or know about this. I have not read very much yet but it sounds > promising. I would be willing to try anything instead of him taking > all these > other meds that cause so many problems down the road. Thanks all and I > appreciate everyone's input. It's great to be a part of this group. > Quote Link to comment Share on other sites More sharing options...
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