Guest guest Posted October 30, 1999 Report Share Posted October 30, 1999 In article <001601bf228e$12b33ca0$110614d1@...>, Yvan & Kathy Trottier <kathytrottier@...> writes > My Rheumy started me on Minocin 100mg 2x daily- said it was normal > protocal. Up to Thanksgiving (In Canada) I was taking that dosage, > but no flares, herx, etc, still the same- feeling good; better than > summer. After reading what everyone says about taking MWF, I > dropped dose down to 200mg MWF. I did this because one symptom I > was having was more salva in my mouth and would have to swallow > more and lips drier. I missed a couple of days without Minocin and > then started on MWF. That symptom went away but just starting to > come back now. I'm wondering if I should reduce dose to 100mg > MWF????????? Does anyone know???? I've been drinking more water > and on my scripe with Minocin, label says to take Dr Brown's protocol called for low dose antibiotics usually taken on alternate days. And this is why many on this list take the treatment in this fashion. However, you have to remember that the patients referred to him often had failed other treatments, and had had their disease for many years. He found that they could not tolerate higher doses due to tissue sensitivities and Herxheimer reactions. My own preference now is for patients with *early* disease ( 1 year or less ) is to rapidly build up the dose to 200 mg daily and stay at that dose. In other patients who are not doing so well on, say, 200 mg x 3 per week, I tend to add Clarithromycin. O'Dell's study does show that this dose of 200 mg per day is well tolerated, and the results of 1/3 in complete remission off all drugs at 4 years is very impressive. So, for you, I would suggest keeping at the 200 mg daily. ------- Regards, Dr Graham Chiu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 What are tissue sensitivities and why would they keep you from taking a higher dose of Minocin? Deb Dr Graham Chiu wrote: > From: Dr Graham Chiu <anon_emouse@...> > > In article <001601bf228e$12b33ca0$110614d1@...>, Yvan & Kathy > Trottier <kathytrottier@...> writes > > My Rheumy started me on Minocin 100mg 2x daily- said it was normal > > protocal. Up to Thanksgiving (In Canada) I was taking that dosage, > > but no flares, herx, etc, still the same- feeling good; better than > > summer. After reading what everyone says about taking MWF, I > > dropped dose down to 200mg MWF. I did this because one symptom I > > was having was more salva in my mouth and would have to swallow > > more and lips drier. I missed a couple of days without Minocin and > > then started on MWF. That symptom went away but just starting to > > come back now. I'm wondering if I should reduce dose to 100mg > > MWF????????? Does anyone know???? I've been drinking more water > > and on my scripe with Minocin, label says to take > > Dr Brown's protocol called for low dose antibiotics usually taken on > alternate days. And this is why many on this list take the treatment in > this fashion. > > However, you have to remember that the patients referred to him often > had failed other treatments, and had had their disease for many years. > He found that they could not tolerate higher doses due to tissue > sensitivities and Herxheimer reactions. > > My own preference now is for patients with *early* disease ( 1 year or > less ) is to rapidly build up the dose to 200 mg daily and stay at that > dose. In other patients who are not doing so well on, say, 200 mg x 3 > per week, I tend to add Clarithromycin. > > O'Dell's study does show that this dose of 200 mg per day is well > tolerated, and the results of 1/3 in complete remission off all drugs at > 4 years is very impressive. > > So, for you, I would suggest keeping at the 200 mg daily. > > ------- > Regards, Dr Graham Chiu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 In a message dated 11/5/99 11:58:53 AM Eastern Standard Time, Dr. Chiu writes: << My own preference now is for patients with *early* disease ( 1 year or > less ) is to rapidly build up the dose to 200 mg daily and stay at that > dose. In other patients who are not doing so well on, say, 200 mg x 3 > per week, I tend to add Clarithromycin. >> Dear Group and DR CHIU: I was diagnosed with RA in 1995, but had no significant symptomatology until Janurary of 1999. I started the Minocin in May of 1999, am at 200 mgs MWF, but am wondering if I am theoretically " early " since I was healthy till one year ago (with the exception of 2 or 3 minor episodes ...two times a trigger finger and once a sore threat and tender achilles). I am responding well to Ap therapy, with sed now about 27 and RF 161. I have tendon problems in wrists and occasional mildly sore ankle and that's it. I don't know if I should go up in dose to 200mgs minocin a day or not. FYI...I have a vaginal yeast infection now (the second in 6 months) but I have eaten sugar which I have dropped. Please let me know how to proceed with the AP protocol. My doctor is leaving it to me and I don't know if I should do 5 days or MWF or something else. ANy advice welcome, as I don't want to lose time! THANK YOU IN ADVANCE> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 In article <0.b6560680.2557a491@...>, SEG14@... writes >From: SEG14@... > >In a message dated 11/5/99 11:58:53 AM Eastern Standard Time, Dr. Chiu writes: > ><< My own preference now is for patients with *early* disease ( 1 year or > > less ) is to rapidly build up the dose to 200 mg daily and stay at that > > dose. In other patients who are not doing so well on, say, 200 mg x 3 > > per week, I tend to add Clarithromycin. >> >Dear Group and DR CHIU: >I was diagnosed with RA in 1995, but had no significant symptomatology until >Janurary of 1999. I started the Minocin in May of 1999, am at 200 mgs MWF, >but am wondering if I am theoretically " early " since I was healthy till one >year ago (with the exception of 2 or 3 minor episodes ...two times a trigger >finger and once a sore threat and tender achilles). I am responding well to >Ap therapy, with sed now about 27 and RF 161. I have tendon problems in >wrists and occasional mildly sore ankle and that's it. I don't know if I >should go up in dose to 200mgs minocin a day or not. FYI...I have a vaginal >yeast infection now (the second in 6 months) but I have eaten sugar which I >have dropped. Please let me know how to proceed with the AP protocol. My >doctor is leaving it to me and I don't know if I should do 5 days or MWF or >something else. ANy advice welcome, as I don't want to lose time! >THANK YOU IN ADVANCE> > If you haven't had many problems with the current dose, and you're still experiencing symptoms, then my own preference would be to push the dose to daily. ------- Regards, Dr Graham Chiu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 Hi > I don't know what you should do, but why not start out slow, MWF, and see if you have a herx. If not, build up to every day. A recent e-mail from the doc said " Aim for the maximal dose " . Just be cautious of a herx. You don't want to get discouraged too soon. > From: SEG14@... >Subject: Re: New to Group > >In a message dated 11/5/99 11:58:53 AM Eastern Standard Time, Dr. Chiu writes: > ><< My own preference now is for patients with *early* disease ( 1 year or > > less ) is to rapidly build up the dose to 200 mg daily and stay at that > > dose. In other patients who are not doing so well on, say, 200 mg x 3 > > per week, I tend to add Clarithromycin. >> >Dear Group and DR CHIU: >I was diagnosed with RA in 1995, but had no significant symptomatology until >Janurary of 1999. I started the Minocin in May of 1999, am at 200 mgs MWF, >but am wondering if I am theoretically " early " since I was healthy till one >year ago (with the exception of 2 or 3 minor episodes ...two times a trigger >finger and once a sore threat and tender achilles). I am responding well to >Ap therapy, with sed now about 27 and RF 161. I have tendon problems in >wrists and occasional mildly sore ankle and that's it. I don't know if I >should go up in dose to 200mgs minocin a day or not. FYI...I have a vaginal >yeast infection now (the second in 6 months) but I have eaten sugar which I >have dropped. Please let me know how to proceed with the AP protocol. My >doctor is leaving it to me and I don't know if I should do 5 days or MWF or >something else. ANy advice welcome, as I don't want to lose time! >THANK YOU IN ADVANCE> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 It is pretty common to see kids whose hair analysis looks like they have amalgam (silver, mercury, tin) when they don't but their mom has a lot. Those reference ranges are a lot different than the other labs use. Andy > Hi: > > I have a 7.5 year old son whose GP hair analysis showed Mercury of > 3.4 (range 0-2) and sliver of 19.6 range (0-1.9). Looks like when I > had all those silver/mercury amalgams out prior to getting pregnant > they filled my body and his with metals. I haven't read of anyone > else's child having silver but there are a lot of posting. I'm just > beginning to look into chelation. Do any of these chelators remove > silver as well. Anyone experienced in chelation in the NYC area?? > > Thanks so much.. > > S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Yes. In a message dated Wed, 31 Jan 2001 1:04:51 AM Eastern Standard Time, hennesjen@... writes: << When you had the amalgams taken out, did the dentist put a dam over your other teeth and a mask over your nose to prevent inhaling mercury vapors? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 , Your best bet will be to find a good DAN (defeat Autism Now ) Dr. Find one that is familliar with oral DMSA chelation and take your son there. If you want to find a Dr. in your area get on the web and do a search for DAN Dr.'s and you should be able to find a list. Start making phone calls: all DAN Dr.'s are not created equal and some of them will pooh pooh the idea of chelation. Best wishes< On Sun, 04 Feb 2001 19:12:35 -0000 " Ballone " <Camp0214fb@...> writes: > I would appreciate any advice, help... to get me started with getting > > my 14 year old son tested for Mercury. I just found out about this > topic and am amazed that I did not hear of this sooner. I live in > Ohio, close to the PA border. If anyone can suggest a doctor in this > > area I would greatly appreciate it. I am looking forward to reading > the posts and seeing if this therapy is working. > Thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Dear , I'd really like to write a much longer reply than I can (I just am out of time right now, and have not gotten through all the mail from yesterday yet ) So I'll answer the parts that I MOST want to answer, briefly: YOU SAID: ================================================================= A hair mineral analysis I had done a year or two ago in the UK showed Calcium and Nickel through the roof with virtually ALL of the other minerals through the floor. I'm not sure what that indicates but I would be interested in getting a test done again, if possible with the US lab recommend in 'counting rules', just to check. Is that possible from the UK or is there a recommended UK lab that is viable to apply the counting rules to ? =================================================================== Well, the counting rules are BASED ON looking for how many high and low values there are. So, if what you say is true, you are toxic according to my understanding of the rules and the premise. If " virtually all " elements are way high or way low you " way qualify " as mercury toxic. Check with DLS as to whether they can run a hair test for you in UK (if so, it is run through DDI, which is in the counting rules.) I'm in too much of a rush to even go find you the text about this, but if you do a search in the archive on " Direct Lab Services " you should find it. I post this about once every week or two. ================================== >I am now very keen to start chelating as soon as possible and would greatly appreciate any advice anyone could offer. As I mentioned, I live in the UK and was wondering if anyone knows of any Doctor's here specialsing in Chronic Fatigue but, more importantly, supportive of Andy's protocol's and who would work with me on the chelation, prescribing the DMSA, etc. Is anyone else on this list living in the UK ? Alternatively, is there a source where I could get DMSA and ALA without a Doctor's prescription ? Thanks in advance for any help. ================================== In the US one can buy ALA at any major health food store, and through any of the major nutritial companies by phone or by web. It is sold as a nutritional supplement. I would think this would be so in UK also, but let us know. DMSA is available in US from ONLY a very few sources that are known to me (or to this list). I also post this VERY frequently. Search on " Vitamin Research " and you'll find the info. I can't think of the website URL (they just changed it and the new one is harder for me to remember.) I don't know if these sources can sell to you in UK, but you can certainly find out. And again, it would be great if you would post your findings. There is a much smaller list, also on groups, -Biomed-UK . (I think I spelled that right!) ====================== >Though I've not read many of the posts here yet (there are SO MANY!!), it sounds like you are achieving some wonderful results with your children and it's so great to hear!! Reading through some of the files and hearing some of the progress being made actually had me in tears!!! But then I always was a bit soft!! ;-) ========================= I may be as soft as you? I've been moved to tears for sure--- but then, I've been reading this stuff for a year--- you may not have " found " some of the more extreme stories of personal achievement/progress. I find it all very remarkable. Check the FILE called " LOVE_LETTERS " (I posted a link to it last night.) Okay, there well, I did answer much of what I wanted to. Still sorry not more time to be chatty about it. Your situation sounds very difficult. Glad you are looking into chelation! best, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Hello again , Now I have a little more time so thought I'd reread your note. ======= <you said, in part > =================== I'm not sure what that indicates but I would be interested in getting a test done again, if possible with the US lab recommend in 'counting rules', just to check. Is that possible from the UK or is there a recommended UK lab that is viable to apply the counting rules to ? ================================================== Did my answer yesterday make any sense? I will (this time) include the information about Direct Lab Services. (it will be after my name at the bottom of this.) I have asked DLS in the past if they can do tests for people in other countries, and it depends on what country (and maybe what test). Call or write them and see what they say. ======== <you said, in part > ============ >I am now very keen to start chelating as soon as possible and would greatly appreciate any advice anyone could offer. As I mentioned, I live in the UK and was wondering if anyone knows of any Doctor's here specialsing in Chronic Fatigue but, more importantly, supportive of Andy's protocol's and who would work with me on the chelation, prescribing the DMSA, etc. Is anyone else on this list living in the UK ? Alternatively, is there a source where I could get DMSA and ALA without a Doctor's prescription ? Thanks in advance for any help. ===================================== You asked for advise. My advise is that your enthusiam for starting chelation ASAP makes sense. My further advise is that you investigate the possibilities for buying ALA & /or DMSA on your own, and that you consider with some care whether you would feel comfortable proceeding without a doctor. Also consider what functions and roles a doctor could helpfully fulfill. And consider ALL the options for how to fulfill these functions or roles. Since I expect you will have difficulty finding a doc who follows Andy's guidelines, or the DAN protocol, I would advise that you proceed in whatever way you can find that best fulfills your desires and is comfortable for you. In my case, I am taking ALA (since beginning of January) and no doctor. I see an accupunturist every 2 weeks (already did that anyway), and I dicuss the state of my liver and kidneys with her regularly, along with everything else. (I have a really fantastic practitioner, so we discuss many details of my health.) I have an adult friend also chelating with ALA following Andy's suggestions for dose/schedule, and without a doctor. She is also doing fine. (She has more side effects than me-- also more physical symptoms to start out with.) I also see her every couple of weeks and we compare notes on how things are going, which is very helpful, and probably makes me a bit more " sane " than I would be otherwise. (It is good to have someone else who is REALLY interested in all this to talk to --- since most people generally think the whole topic is rather off-the-wall.) Your mileage may vary, in fact it probably will--- so it is best for you to decide what to do. (But more options is very good!) I will also include (this time) the info (which I post very frequently) about how/where to buy DMSA (in the US) without an Rx. These sources you can also check out -- I don't know if they can sell to you or not in UK, but it is worth asking (if you want to take DMSA). As I said yesterday, ALA is available freely all over in US-- I buy mine at the health food store. good luck! best, Moria ==================================== Direct Laboratory Services http://directlab.com provides access to testing for professionals and consumers, and they will order tests for you. The way they do this is they have a doctor who requests the tests for you. They are following the normal procedures of the labs involved. They will charge you for this service (by marking up the prices of the tests). However, in some cases their prices will be lower, due to volume discounts and other pricing considerations they get from the labs. Expect them to be helpful, and to treat you as a customer. To order tests, call their Reno office at (877) 339-2444 or (775) 852-2170. The person to talk to is Bassett. Which types of tests you want run will determine what lab they run the tests through. They expect you to prepay, and will send the test kit(s) to your home. a urine toxic metals and essential elements test, processed through DDI, costs $149 a fecal test for heavy metals, through DDI, costs $139 a hair test, through DDI, costs $79. A list of many of the tests available, and prices, can be found at: http://healthchoice.net/lab/labtest_menu.html. " Healthchoice " incorporates several organizations, including DLS. (see http://healthchoice.net/aboutus/whoarewe.html). You can also order a hair test from www.bodybalance.com. BodyBalance is a separate division of Great Smokies Diagnostic Laboratory. This test costs $60, plus postage. You can order a " test kit " from their website, or by phone (888) 891-3061. The " kit " comes with detailed instructions. It includes a legal release form that you will need to sign. It takes about 2 weeks to get results. The results from this test are not included in the counting rules file, however, you can still use the results to look for unusual high/low mineral values, and high values on other toxic metals (besides mercury). ========================================= ALA can be purchased at most health food stores. It is sold as an anti-oxidant supplement. DMSA generally requires a prescription. You can buy DMSA without a prescription from the sources listed below. There may be advantages or disadvantages for you to buy it by prescription verses over the counter. If you have insurance that may cover it, you will want to get it with a prescription. Over the counter it is cheaper, and you don't have to have a doctor. Vitamin Research Products sells DMSA without a prescription. 100 mg capsules: $40 for 45 capsules, plus about $3 for shipping. They do not sell DMSA in doses smaller than 100 mg, so, if you need a smaller amount you'll have to divide it yourself. Other Ingredients: Microcrystalline cellulose (a natural plant fiber) and gelatin. Contains no added sugar, starch, salt, wheat, gluten, corn, coloring, dairy products, flavoring or preservatives. Vitamin Research Products, Inc., Carson City, NV 89701 USA (800) 877-2447 (Mon - Thurs 6 AM to 6 PM pacific time; Fri 6 AM to 5 PM) www.vrpcentral.net The Falls Pharmacy sells Captomer (DMSA made by Thorne Labs) without a prescription. A bottle of 45 capsules is $45. To order (or for more info) send email to Brock Nyberg, Pharmacist at: getit@... Thorne Research makes DMSA called " Captomer " . They will not sell this to just ANYone, but they will sell it to any licensed health care practitioner of any sort (e.g. nurse, chiropractor, optometrist, podiatrist, pharmacist, clinical nutritionist, homeopath, acupuncturist, etc.), who could then re-sell it to you. (Note that the Falls Pharmacy, listed above, sells the Thorne brand.) Their suggested RETAIL price is $43.10 for 45 capsules, 100 mg-- I don't have the wholesale prices. Thorne Research: (208)263-1337, located in Idaho. Kirkman's will sell DMSA without a prescription, but they do require verification that the user is under a doctor's care. This verification can be phone, fax or written note from the doctor. We have not heard of a non-prescription source for DMPS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 > I would like to know if anybody has any info on if you can take these enzymes with nystatin(or something similar) and if there are any drugs/supplements/vitamins-anything at all that you should NOT take the enzymes with? (barring of course things that one knows one's child is sensitive to) The proteases and cellulase enzymes work to enhance the effectiveness of nystatin or other yeast and bacteria treatments. No bad interaction with the others. If you are on a prescription medication, just check with your pharmacist and/or doctor to make sure, but usually there is not adverse interaction...except the following, but I don't know if this is really " adverse " or not. Some of us, including me, have found that when you start taking enzymes, the enzymes breakdown the binders and fillers in the medications and help them to be absorbed more. So your body is acutally taking in more medication than it was before. So you may see more side-effects from your body getting a higher dose than before. You are taking the same amount but your body is digesting and absorbing more of what you take. I ended up reducing both out medicines by 1/3 with enzymes for the same about of results. It could also be that with enzymes, something in our systems was " fixed " and so we just don't need that much anymore. You can freely mix the enzymes with all supplements that I know of (someone else say if you know of something) except colostrum and probiotics. For colostrum, it may contain some helpful milk protein or something like that which the enzymes would break down. We don't know for sure. This is a guess. So just to be on the safe side, give colostrum and proteases seperately. The same with probiotics. There may be an interaction and there may not be. There is disagreement on this, so to be on the safe side, give separately. Some people said they saw better results giving these separately and some say they don't. So it may depend on the brand of probiotic too. Separately can be enzymes at the beginning of the meal and probiotic at the end of the meal, too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 > I have just joined this group after reading about Peptyzide and HN > Zyme in Autism magazine. Our 11 year old HFA daughter seems to crave > carbohydrates and dairy. She will not eat vegetables and rarely eats > fruit. Could this kind of craving indicate an intolerance? Yes > She does > have trouble with her skin; rashes and eczema. My kids have rashes and eczema when they eat " bad foods " without enzymes. > Needless to say, based on my daughter's eating patterns we have not > been able to try GFcF diets. I use enzymes from here, I would suggest you consider them for your daughter. http://www.houstonni.com/ Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 thank you dana [ ] Re: New to group > I have just joined this group after reading about Peptyzide and HN > Zyme in Autism magazine. Our 11 year old HFA daughter seems to crave > carbohydrates and dairy. She will not eat vegetables and rarely eats > fruit. Could this kind of craving indicate an intolerance? Yes > She does > have trouble with her skin; rashes and eczema. My kids have rashes and eczema when they eat " bad foods " without enzymes. > Needless to say, based on my daughter's eating patterns we have not > been able to try GFcF diets. I use enzymes from here, I would suggest you consider them for your daughter. http://www.houstonni.com/ Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Hi Krista, There are all kinds of autoimmune disorders that can develop with . I don't know anyone with ITP but the abstract below mentions viruses and immune dysfunction. There were some others that mention the herpes viruses like HHV6, Epstein Barr, etc. the type that were involved in many of our childrens ongoing dysfunction. Unfortunately most doctors look more at acute infections and just assume that autoimmunity becomes self perpetuating. Even if a virus is not the trigger for the immune dysfunction, viruses and other infections can take advantage of the immune dysfunction. The food sensitivities develop when the immune system becomes overactive. They are not always obvious. My older son had none of the obvious symptoms like my younger one (autism spectrum), yet viruses, yeast, dietary issues were triggering off his immune system. Besides CFS he had also developed an autoimmune skin disorder. For two years we worked with our GP, then a specialist. Everything they had us do was not really helping. After he was on the protocol his skin disorder went into remission. I would definitely try to have the bloodtests done for the workup. If your child is like many of the kids (chronic smouldering viruses, etc.) you want to avoid steroids if at all possible. http://www.nids.net/labtests.htm Dr. Goldbergs website for info in addition to .net www.neuroimmunedr.com I hope that you can find some answers for your son. It's hard when no one seems to really understand what is wrong, how different problems are really medically interconnected. Cheryl Blood Rev 2002 Mar;16(1):27-9 Related Articles, Books, LinkOut Childhood immune thrombocytopenic purpura. Nugent DJ. Division of Hematology, Hemostasis/Thrombosis Research, Children's Hospital of Orange County, Orange, CA Childhood immune thrombocytopenic purpura (ITP) is acute and generally seasonal in nature, suggesting that infectious or environmental agents may trigger the immune response to produce platelet-reactive autoantibodies 4 to 8 weeks following an infection. In general, the patient is well apart from the diffuse bruising and petechiae indicative of a profound thrombocytopenia. Over a period of 6 months, the thrombocytopenia resolves in approximately 85% of children, while the remaining 15% with persistent platelet consumption are designated as chronic ITP patients. The peak age of acute ITP is 2 to 5 years of age, a period when children experience the greatest frequency of viral infections. Children with the chronic form of ITP mirror the adult phenotype, in that females predominate, and there is no seasonal fluctuation of the disease. Evidence from our laboratory suggests that the activated platelet itself may play a role in perpetuating autoantibody production and immune dysregulation associated with ITP. Current data on lymphocyte studies and cytokine alterations noted in response to the variety of regimens used in children with ITP suggest that acute ITP is accompanied by autoantibodies to GPIb and a cytokine profile that is proinflammatory in nature. Early recognition of the immune dysregulation driving acute versus chronic ITP will distinguish those children who might benefit from immunotherapy versus those who will recover without therapeutic intervention. Copyright 2002, Elsevier Science Ltd. All rights reserved. PMID: 11913990 [PubMed - in process] >From: " iamjoeysmom " <joemommy@...> >Reply- > >Subject: new to group >Date: Sat, 30 Mar 2002 02:49:34 -0000 > >Hi, my name is Krista and I am new to the group, so I am not sure >how these posts work. I have been intrigued by Dr Goldberg's work >since I stumbled upon it a few months ago. My son (3 years >old) is Autistic. Not so coincidentally, he was also diagnosed with >Idiopathic Thrombocytic Purpura (ITP), an autoimmune disorder >destroys the patient's platelets. The onset of his ITP was within a >month or so of his developmental regression and the appearance of >his unrelatedness and self-stimulatory behaviors (about 15 months of >age). I have a Master's degree in Speech Pathology and have been >working with young children for the past 10 years, so I feel >qualified to say his development was normal until then. I am >convinced the 2 problems are related. is being monitored by >the Hematologist for his ITP, the only treatment he received was one >dose of intravenous steroids during the acute phase of the disorder >when he was at risk of hemhorraging. For now, his platelets are in >a " safe " range, but are still below normal. Interestingly, the >results of the standard blood work which is done at one year of age >indicated that 's platelet count was well within a normal range >at a year. Yet, mysteriously at 15 months, it was dangerously low, >and the autistic behaviors appeared. I just brought him to see an >Endocrinologist who is gathering all previous testing to determine >what tests need to be done. I had taken to an >allergist/immunologist, but had a bad experience with him, so I am >pursuing the Endocrinologist instead. I didn't have any luck with >the casein free/gluten free diet. Thankfully, is a good eater >and doesn't seem to have any food allergies. I guess I don't have >any specific questions, but rather was wondering what treatments are >out there for these kids? Has anyone had similar blood disordered/ >autoimmune dysfunction that they had received treatment for with any >success in treating the Autism as well? > > > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Welcome Dave, There are a lot of great people in this group. They have helped me along in this my first year as a member of the group. L davepastirik_2000 wrote: Hi All, I'm new to the group, I have Ankylosing Spondylitis and I have been looking for support for a longtime. I'm glad I found this group. Dave To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Hi, I think it likely that my son had bad ABA from the same place as your client (C--------s). We are in Schoharie, NY. We transitioned to a manding only protocol for 2 months and have gone from there. I am also a competing EO in the home. However, I am usually in the ROOM, not upstairs. I take the child to the therapist or he sits on my lap if he has to. Occasionally I have had to leave the room. Especially at first. But it works. My little guys go to a developmental integrated preschool that has a strong OT, SI program. It is in Delanson. Call me if you want to . 518-295-7337. We have used VB procedures for not quite one year. t Burk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 How is his language? How long has he had this behavior? I just attended a meeting with Dr. Houston himself, and he said 1 capsule per meal to start might be best.....increase as you think is needed, but I believe no more than 2 per meal is recommended......If you have a fax machine, I could send you a copy of a printout he gave us that would give you some good info. including doses. Based on this enzyme chat group, a lot of folks use 1, 2 and even all 3 of his products. Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 yes please fax is 64 9 415 9294 this is in New Zealand - but you will be remembered in heaven! - much appreciated Cheers H Re: [ ] new to group > How is his language? How long has he had this behavior? I just attended a > meeting with Dr. Houston himself, and he said 1 capsule per meal to start > might be best.....increase as you think is needed, but I believe no more than > 2 per meal is recommended......If you have a fax machine, I could send you a > copy of a printout he gave us that would give you some good info. including > doses. > > Based on this enzyme chat group, a lot of folks use 1, 2 and even all 3 of > his products. > > Good luck! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 Dear Jay, Welcome to the other side of the " Time Warp " . Now YOU know but MILLIONS dont. There will be those who dont want to know. Just help the ones that do. I just wish to Hell someone had told me all this before I got pregnant. I could have spared my daughter a lot of grief! [ ] New to group > Hi, > > I joined the group about a month ago. I have read some past posts, most of > Andy's files, and Andy's book so I'm somewhat up to speed. > > I'm a psychologist in NYC supervising homebased, ABA programs for ASD > children. I became aware of biomedical issues such as mercury poisoning and > chelation through my work as some of the children I see have begun the > various biomedical protocols. As I learned more, I began to wonder about > many nagging physical and neurological problems I have had over the past > 5-10 years (talk about a bear with a sore head!!). > > I have had a mouthful (12 teeth) with many fillings in each starting as a > child (I'm now 43). Over the past 5 years, 6 of these teeth had broken and > required caps and a few root canals. A few months ago, I started the > process of removing my amalgams. > > I bought Andy's book about 3 weeks ago and was chilled when I read the > description of symptoms of mercury poisoning as I thought perhaps he knew > me. While I knew about the exposure from my amalgams, I wasn't aware that > mercury based preservatives were used in injectables other than vaccines. > As a child, I received weekly allergy injections for about TEN YEARS. > According to Andy, most of these were probably mercury preserved. So while > the dentist was loading my mouth with mercury, my pediatrician first and > then an allergy specialist were injecting it in my arm. My mom helped out > by putting mercurochrome antiseptic on all our cuts (thanks mom!!). > > I have always used many supplements and have refined them according to > Andy's recommendations over the past few weeks. I have now replaced the > amalgams in both lower quadrants and today had 2 upper caps removed and > amalgam removed underneath. Next week, I am having the last few caps > removed to remove the last of the amalgam, afterwhich I will begin using > DMSA as per Andy's schedule (have a consult with my alternative doctor next > week where I will propose Andy's protocol which I am pretty sure he doesn't > use). > > One amazing result that I have already had with Andy's recommendations is > for allergies. I have always had severe tree and weed (spring and fall) > allergies and have been using a steroid nasal spray for about the last 10 > years during those seasons. I have not used it for the past 3 weeks, but > instead added more DHEA, more GLA (borage oil), forskolin, and conjugated > linoleic acid. Despite very high tree pollens in NYC over the past 3 weeks, > I have virtually been symptom free which is startling. > > This list has been very informative and I am beginning to understand the > need for support. Both families and friends that I have told this story to > have laughed it off as silliness which as you all know is very frustrating. > I'll be happy to make occasional progress reports as I undergo the long > process ahead. > > Jay > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 > I just wish to Hell someone had told me all this before I got pregnant. I > could have spared my daughter a lot of grief! Amen. Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 Hello Jay: Thanks for the post. Good luck with your detox. I'm detoxing as well and also my 10 yr old son. In Christ's love and mine...Jen : ) On Fri, 26 Apr 2002 01:02:54 -0400 " Jay Goldwein " <getinline@...> writes: Hi, I joined the group about a month ago. I have read some past posts, most of Andy's files, and Andy's book so I'm somewhat up to speed. I'm a psychologist in NYC supervising homebased, ABA programs for ASD children. I became aware of biomedical issues such as mercury poisoning and chelation through my work as some of the children I see have begun the various biomedical protocols. As I learned more, I began to wonder about many nagging physical and neurological problems I have had over the past 5-10 years (talk about a bear with a sore head!!). I have had a mouthful (12 teeth) with many fillings in each starting as a child (I'm now 43). Over the past 5 years, 6 of these teeth had broken and required caps and a few root canals. A few months ago, I started the process of removing my amalgams. I bought Andy's book about 3 weeks ago and was chilled when I read the description of symptoms of mercury poisoning as I thought perhaps he knew me. While I knew about the exposure from my amalgams, I wasn't aware that mercury based preservatives were used in injectables other than vaccines. As a child, I received weekly allergy injections for about TEN YEARS. According to Andy, most of these were probably mercury preserved. So while the dentist was loading my mouth with mercury, my pediatrician first and then an allergy specialist were injecting it in my arm. My mom helped out by putting mercurochrome antiseptic on all our cuts (thanks mom!!). I have always used many supplements and have refined them according to Andy's recommendations over the past few weeks. I have now replaced the amalgams in both lower quadrants and today had 2 upper caps removed and amalgam removed underneath. Next week, I am having the last few caps removed to remove the last of the amalgam, afterwhich I will begin using DMSA as per Andy's schedule (have a consult with my alternative doctor next week where I will propose Andy's protocol which I am pretty sure he doesn't use). One amazing result that I have already had with Andy's recommendations is for allergies. I have always had severe tree and weed (spring and fall) allergies and have been using a steroid nasal spray for about the last 10 years during those seasons. I have not used it for the past 3 weeks, but instead added more DHEA, more GLA (borage oil), forskolin, and conjugated linoleic acid. Despite very high tree pollens in NYC over the past 3 weeks, I have virtually been symptom free which is startling. This list has been very informative and I am beginning to understand the need for support. Both families and friends that I have told this story to have laughed it off as silliness which as you all know is very frustrating. I'll be happy to make occasional progress reports as I undergo the long process ahead. Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 Hi Jay, It is so nice to have a member of the medical profession join and understand us.The truth is always revealed and I'm sure as time goes on many more doctors will " cross the line " .In the meantime we as parents are against the clock as we try to remove the toxins from our kids and so we have to rely on each other for info. Sometimes it's hit or miss but it's ALWAYS better than the poison they put in our children. I too had all my amalgams removed and even though the progress has been slow I feel ALOT BETTER!I think back to the time when my mouth was loaded with mercury,I played with the little silver balls rolling around my bathroom floor, and mercurochrome was slathered all over my cuts and realize that is when I started noticing alot of strange symptoms. I thought it was due to the fact that I was approaching puberty and my body was changing,now I know different.Glad to hear you're feeling better. R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 Hello Jay, >I bought Andy's book about 3 weeks ago and was chilled when I read the >description of symptoms of mercury poisoning as I thought perhaps he knew >me. I felt this way too--- nice to know I'm not the only one! >This list has been very informative and I am beginning to understand the >need for support. Both families and friends that I have told this story to >have laughed it off as silliness which as you all know is very frustrating. >I'll be happy to make occasional progress reports as I undergo the long >process ahead. good-- that is something to look forward to Thanks for sharing. I'm sure going through detox yourself will be of great help for the families you work with also. Nothing like personal experience Moria [also in 40's and chelating myself] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 | I joined the group about a month ago. I have read some past posts, most of | Andy's files, and Andy's book so I'm somewhat up to speed. | | I'm a psychologist in NYC supervising homebased, ABA programs for ASD | children. I became aware of biomedical issues such as mercury poisoning and | chelation through my work as some of the children I see have begun the | various biomedical protocols. As I learned more, I began to wonder about | many nagging physical and neurological problems I have had over the past | 5-10 years (talk about a bear with a sore head!!). .... | I'll be happy to make occasional progress reports as I undergo the long | process ahead. Jay, I'll look forward to your updates. I wonder if you are in a position to note any effect, positive or negative, that the biomedical interventions have on the kids you see. I ask this because I've noticed that whenever my child makes progress, therapists and teachers attribute it to their interventions, or they say that she was just 'ready' for the intervention to take hold. (And if I attribute her disabilities to toxicity and illness, they smile patiently and probably think I'm in denial or something). I know that as my child gets healthier she's more able to respond to their interventions. In all honesty, there is no way I can tease apart the theraputic and health influences. It would be wonderful if someone who sees this issue from both angles could comment or even collect data of some kind on biomedical interventions and their effects on therapy. " Mom anecdotes " aren't going to persuade most professionals, I'm afraid. And it pains me to think of all the children who will never benefit from biomedical and dietary interventions. Good luck, K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 -Welcome JoAnn! If you look to the left on your screen you will see " files " click on that and you will find loads of info that will probably answer your questions(and then some!) I am " just a mom " on here and will tell you that Houston's enzymes rule and I personally wouldn't touch any other brand because these work so well for my daughter(she is 8 and no longer has to be gfcf.) -- In @y..., " joann4dk " <joann4dk@y...> wrote: > Hello Everyone, > > I just joined this group in hopes of getting some help. My son, > Dante, 4 1/2 AI, is currently on the GFCF diet for about 6 months. I > would say that he's about 98% GFCF -- and doing wonderfully! We are > also chelating him with PCA. He's already up to 6 word sentences and > amazing me everyday! > > My husband and I were thinking about checking into enzymes to see if > this would help him, but I have no idea where I should start my > research. I've read that Kirkman and Houstan Labs sell them. Are > their information good or bias? I do have a DAN doctor, but have yet > to discuss it with him. Thought I would check it out and had a > little knowledge before I went to him. > > So any help in advance would be greatly appreciated! JoAnn Quote Link to comment Share on other sites More sharing options...
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