Guest guest Posted April 21, 1999 Report Share Posted April 21, 1999 Hi to the List! I am new to this list, and have been reading daily, quietly, as an observer. I often do so when joining a new group. As a newcomer, I must say, I am struck by the " defensive " verbage by some members. If a particular program works for some families, thank God. Hurrah!!! No need to throw stones if it happens to " old " or " out of date " as seen by different locales & medical professionals. I like to read about ALL new methodology, do MY OWN research, take what I see as viable for OUR situation & location, present facts & have a discussion with our medical/psych service providers, and make informed decisions, in the best interest of all concerned. As a parent, counselor, child advocate, and aunt to many of these kids, I know we can't all fly to S. CA whenever we might choose. I also know the frustration & need for " I'M DOING THE RIGHT THING " sense that many of us feel and KNOW on a daily basis. We question ourselves about everything, much moreso than other parents of " normal " kids. So, I am not even condemning or pointing a finger, just making a biased observation of what I am seeing so far on this list. I hope each of you out there are well and healthy today, and that our kids find the year 2000 more knowledgeable and understanding of there differences. Sincerely, a onelist wrote: > New hobbies? New curiosities? New enthusiasms? > http://www.ONElist.com > Sign up for a new e-mail list today! > > There are 20 messages in this issue. > > Topics in today's digest: > > 1. Re: FEAT News? Your input please. > From: Sharron Rule <sherules@...> > 2. Re: HMO excuses > From: Bounds <mbounds@...> > 3. Re: FEAT News? Your input please. > From: " SandyD " <sandy@...> > 4. Re: FEAT News? Your input please. > From: " SandyD " <sandy@...> > 5. Re: Lovaas outdated? > From: " Gill, " <lgill@...> > 6. Re: Lovaas outdated? > From: Lizanj@... > 7. Re: Lovaas outdated? > From: lois noland <jlois@...> > 8. Re: Lovaas outdated? > From: Lizanj@... > 9. Re: Lovaas outdated? > From: lois noland <jlois@...> > 10. Re: Lovaas outdated? > From: Bounds <mbounds@...> > 11. Re: Lovaas outdated? > From: Lizanj@... > 12. Re: Lovaas outdated? > From: lois noland <jlois@...> > 13. Re: Lovaas outdated? > From: Lizanj@... > 14. Neuro News: ADHD, Violent Offenders Brains Found Different > From: " FEAT " <feat@...> > 15. Re: Lovaas outdated? > From: CWither43@... > 16. Re: Lovaas outdated? > From: lois noland <jlois@...> > 17. Re: Lovaas outdated? > From: Virri345@... > 18. Re: Lovaas outdated? > From: Rusadie@... > 19. Lovaas > From: " SandyD " <sandy@...> > 20. Re: Lovaas outdated? > From: " Bukitt " <wingding@...> > > _______________________________________________________________________________ > _______________________________________________________________________________ > > Message: 1 > Date: Tue, 20 Apr 1999 22:33:06 +1200 > From: Sharron Rule <sherules@...> > Subject: Re: FEAT News? Your input please. > > Hello. > > I dont even know who or What Feat are ?? Can someone please tell a KIWI....... > > Regards > Sharron > > FEAT wrote: > > > From: " FEAT " <feat@...> > > > > Dear Sandy. > > > > Whoa! Droppin' a 'get-lost' hint. But I thought this list was not > > moderated? It seems a little unusual to put someone's posting content up to > > a straw vote for a list that's not moderated. Is there a problem with any > > of the posts I've made so far? I haven't heard of any complaints on > > content. > > > > So what does it take for me to lose the " input " vote you're taking and be > > asked to leave? Are you looking for a simple majority of subscribers, or > > perhaps would just a loud handful do it? > > > > Why don't you want the press around, Sandy? The press can be a tremendous > > asset to the autism community. But if we're going to defeat autism, we will > > need to be supportive of eachother. > > > > -lenny schafer > > Izak's dad > > > > > Re: Lovaas outdated? > > >From: Rusadie@... > > > >In a message dated 99-04-20 23:52:47 EDT, you write: > > > ><< I have certainly seen more than one child benefit from Lovaas. It > works. > >I > > firmly believe in it. I'm sure many of us wonder if we'd been able to > > arrange for Lovaas for children just how much further they'd be now. > > >> > >I must have missed something - what is Lovaas? Where can I get it? TIA > >martha > > > >------------------------------------------------------------------------ > >Have you visited the new ONElist home page lately? > >http://www.ONElist.com > >ONElist: The Leading e-mail list and community service on the Internet! > > _______________________________________________________________________________ > _______________________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 1999 Report Share Posted April 21, 1999 I would just like to second the sentiments expressed by a and Chuck . Although, I think a bit of defensiveness and contention is almost unavoidable in this area. Since no one method of treatment has proved universaly successful, (for that matter not even successful in a majority of cases considered) each therapy/treatment is in a constant struggle to establish its legitimacy. Lovaas is one of the more broadly accepted therapies and I haven't found one therapist (and we've seen many) who would recommend it for our child. And, many who have disuaded us from it. It's interesting to me that the people, in my experience, who are most likely to recommend Lovaas, are degreed medical practitioners who have little exposure to or experience with developmentally delayed children following diagnosis. That's why I was interested in hearing from people who are proponents of it. At present I have considered and explored to some degree several different approaches: viral cause (Goldberg, Vingh, Torrey, Swedo et al., genetic inheritiance of childhood bipopar disorder (Dr.DeLong) auditory disregulation (AIT) diet/allergies (Dr. Stanely Baker) Greenspan (one of the best books I've ever read on this issue and a very compelling speaker if you ever have a chance to see him) The Sawtelle School (Lovaas) Impulse Control (n Blank). At present, we are pursuing a viral treatment, TEACCH (I'm not sold) and speech and OT therapies because they seem (in combination to produce the best results). AIT was a disaster, Diet doesn't seem to have a dramatic effect, and allergies don't appear on the blood work. Every one of these elements (viral, TEACCH, Speech and OT) has both it's supporters and detractors. As a parent, you have to listen to the best information possible and make choices based on your own observations of what works. I would hope that the primary purpose of this board would be to provide parents with a central information service where they could share experiences and observations, not as a soapbox for proponents of one or another therapy to preach their Gospel or to condem others. By the way, I think that in reading this that it may sound as if we are floundering in this effort but in truth our child is making very good progress and like many in this community are both encouraged and discouraged many times all in the same day. To the ' thanks again for your post. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 Hallo everyone on the Dr list! Many of you are talking about the parasite cleanse...... and you don't find Hulda R. s cleanse strong enough and it just bring you minimal success. Hulda R. writes about this in her books: The herbal parasite program is not effective against all tapeworms. The zapper can't reach every one either. Other traditional herbs, such as pumpkin seed or male fern, are helpful, but the most effective treatment I have found is Co-enzyme Q10. Please read all about tapeworm mop-up program, and try that before you say that Hulda s method is not working: www..ch/info/tapeworm.htm Here is some more she writes about tapeworm mop-up program: " If your symptoms return or never completely left, you can assume that some eggs escaped or you still have a particularly resistant tapeworm stage. You may safely double the dosage of ozonated oil. Take one tbs. twice a day for one day only. It is not necessary to repeat this. No Ascaris or tapeworm stage can escape this one-time treatment. Only reinfection can give them back to you. Although there are no side effects, you may not take this dosage on a daily basis. But you may add it to your weekly maintenance program (including vitamin E). (From: " The Cure for HIV and AIDS " , p. 34ff.; copyright notice) Please also always consider the possibility of reinfection. If you do a parasite cleanse and you are not careful with the hygien, you will always reinfect yourself, and the cleanse will not be effective. Best regards, Mona Hulda Klinikken sostuve@... Dronelist wrote: > How many communities do you think join ONElist each day? > > More than 1,000! Create yours now! > ------------------------------------------------------------------------ > http://home.sol.no/~dusan/ > > There are 2 messages in this issue. > > Topics in today's digest: > > 1. Re: Tapeworm > From: " Ulf Hogberg " <ulftage@...> > 2. Re: Introduction > From: " Ulf Hogberg " <ulftage@...> > > _______________________________________________________________________________ > _______________________________________________________________________________ > > Message: 1 > Date: Tue, 1 Jun 1999 07:45:46 +0200 > From: " Ulf Hogberg " <ulftage@...> > Subject: Re: Tapeworm > > On 29 May 99, at 17:11, Dusan Stojkovic wrote: > > > One old message form <cures for canceregroups> list : > > From: " Johanne Wayne " <johanne@...> > > Date: Wed, 24 Mar 1999 07:25:39 -0600 > > > > Another question I have about parasites. I was wondering if there are > > any treatments powerful enough to cross the blood-brain barrier. I've done > > the Hulda treatments several times with minimal success, I've done > > Clear from Awareness Corp. with medium success and somehow I'm convinced > > that my tumor in the brain is a nest of parasites. Yesterday, a long > > tapeworm came out of me and it was horrific. I do not eat meat or fish or > > dairy, I wash all my organic veggies properly and we hardly eat out > > because organic restaurants are next to none. I know my immune system is > > down because of this. All of the suggestions that Dusan writes have been > > followed and continue to be. What can I do more? > > Perhaps this is stating the obvious, but there are two main reasons > why one would not get the desired results from a treatment: > > a) there is something wrong with the treatment/method itself (it does > not work) or > > there is something wrong with the _application_ of the > treatment/method (the most usual cause of failure). > > As she does not give any data about what was actually done, one can > only guess as to the cause of the " minimal success " with the > treatment. One guess is that she only did the basic parasite > treatment and zapping which, per the cancer book, is absolutely not > enough to cure cancer. > > Best regards, Ulf > ulftage@... > > _______________________________________________________________________________ > _______________________________________________________________________________ > > Message: 2 > Date: Tue, 1 Jun 1999 07:45:46 +0200 > From: " Ulf Hogberg " <ulftage@...> > Subject: Re: Introduction > > On 24 May 99, at 11:08, R. Sooley, D.C. wrote: > > > >> 1. Why are large dosages of certain B vitamins utilized (ie, B2 for > > >> 'purification') and these dosages not balanced with the rest of the B > > >> complex? > > > > > >I would think it is because the B2 is not used (on the kidney > > >cleanse) for nutritional purposes but to help dissolve stones. It is also > > >used only for a relatively brief period of time (six weeks). > > > > > I thought it was used to purify food. Doesn't this need to be ongoing to > > prevent problems from re-occurring? > > In that case yes, but I am not familiar with that use of the B2. But > still my original answer then applies, in a way. If it is used for > purifying food, then it is not primarily used for nutritional > purposes and then the balance with the other vitamins wouldn´t be > that important. > > I must also say that I am not really the right person to answer these > questions as I have only known about Hulda and her methods for > about half a year. I only answer because no one else does. :-) > > > >> 2. Same as #1, but applying to amino acids such as cysteine > > > > > >Same here. The cysteine is used for handling certain hard to kill > > >parasites and also over a brief period of time (three weeks). > > > > > My parents are using it to 'cure' their milk, etc. which seems to be an > > ongoing project (not just short-term). > > I see. Well, I am not familiar with that use of the cysteine. > > > I'd like to know what the benefits of chicken broth is.....seems to me to > > be a cesspool of saturated fats and estrogen-like compounds that are > > certainly a risk factor for hormone-dependent cancers such as breast and > > prostate > > I cannot say really why she recommends it in this case. I know that > she sometimes recommends things which go against what is considered > correct among health oriented people (like drinking milk). But I also > know that she always have a very good explanation for her > recommendations. They are never based on fixed ideas or whims or such > things. > > > Hey, I'm not saying Dr. isn't doing fantastic things for her > > patients....my parents are doing well after their visit to her. I just > > want to learn more about it. > > Yes, nothing wrong with that. :-) First I would recommend her three > books, of course. If you become a member of Dr Research > Association (I am) you will also get the newsletter with information > not found elsewhere as well as a direct line to dr herself. > > Also the Norwegian Hulda Klinikken has a brand new home page which > you will find at http://home.sol.no/~huldakli/ Most of it is in > Norwegian but some parts are also in English. > > Best regards, Ulf > ulftage@... > > _______________________________________________________________________________ > _______________________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 I have a comment about that study. I think since there is so many types of Hep C, the 45 year study may not be up to date. I know if two people have HIV they should still have protected sex, because they can infect each other with different types. Atleast that is what was explained to me once. So I am assuming with all the genotypes of HEP C, and how everyone react differently to treatment, this study seems like one almost unimportant, to me atleast. There is way to much information out there now, and with one such as the recent study, it shouldn't make a real difference. The medical field is still a long way away from stopping hep. Corey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 well put sherry from texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 This is to everyone here, I ask prayer for a dear friend of mine, Cookie. She has hepatitis c and has also had other health problems, but has worked so hard at helping others. She is on a bulletin board that I visit and we have become good friends for about a year now. Cookie is a monitor in a hep c chat room and such an inspiration for us all. So many times that she has been ill, she just couldn't wait to get back home from the hospital and online with her hepatitis c friends. She was like a mother to so many of us. The last conversation I had with cookie, I was on ICQ chatting with her, where we can record our voices and listen to each other. I did my chicken imitation and I remember her laughing so hard and she had her family come in and listen to it. Now she needs all of our prayers, please pray for Cookie, below is the e-mail I received today about cookie. Thank you, Sherry o All I have terrible news.. Our dear Cookie had a brain hemorrage yesterday and is in a coma.. Her daughter icq me this morning and we talked for a long while.. they of course are all in shock as all of you will be also and they and cookie desperatly need our prayers.. Miracles DO happen.. The doctors said it affected all 4 chambers of her brain and do not expect her to make it more than 48 hrs.. Please pray harder than you have ever prayed in your life.. i beg you to do this.. Remember our Cookie is a fighter and she loves the Lord with all of her heart and soul and mind and she would want whatever Gods will is.. She has always loved all of you so much and has been so caring and giving .. Some never will know how much she does around here or even think of it.. but she was here from the beginning and is our cornerstone here.. She took me under her wing and taught me everything .. I love her as if she was my sister.. Shaunna her daughter says to tell you that she has always told her mom that if something happens that she will come into chat now and again and talk to all the people her mom loved so and on icq too.. She is such a loving daughter and has always been there for her mom as well as their whole family.. the boys and girls and need our support now more than ever.. As soon as Shaunna knows anything else she will call me asap and I will let you all know.. The thing now is that we all need to help each other and remember it isnt over till its over.. Cookie would want you all to pray for her..and to help one another.. I love you all very much and will keep you posted.. Janis To all of you that have forums elsewhere please post and ask for prayers.. egroups wrote: > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 My Two Cents- Thought I'd put a foot in here and report on the continuing results on the Wheldon protocol for Chlam. Pneumonia (Cpn). I've had CFS and chemical sensitivities for past 25 years, and ensuing bouts of candida, allergies, etc. Over the last 2 years my fatigue, brain fog, and huge bouts of inflammatory pain, mostly muscles and joints, but even eyes red and any mucous membranes irritated. Testing for a plethora of infectious agents came up with high titers of Cpn-- an organism linked to inflammatory conditions from heart disease, to ms, to crohns, to arthritis, to CFS and FMS. I was started on Tetracycline for 3 months. The first week I hit a herx of what I could only call " exquisite pain " ie beyond description. It certainly confirmed the tremendous inflammatory nature of the endotoxin of this organism. I quickly plateaued in improvement. Some rounds of IV silver helped, but clearly something else was needed. I discovered Wheldons protocal which he adapted from the Vanderbilt group to treat his wife with MS, with great success: doxy & zithro constantly, with pulsed flagyl for 5 days every three weeks. Flagyl was " the bomb " and the feeling of energy and relief after the first dose was palpable. Clearly some drag on my system was being abated by the flagyl. Initially, I could tolerate one tab a week, the worked up to two tabs for three days. I found the three week period too long, I would crash by second week, so have been doing 3 days of flagyl once per week, the zithro and doxy a constant. I still get significant herx from the zithro/doxy evening dose, so there's still extracellular load coming down. As hard as flagyl is on my stomach, it makes the significant difference in improvement: energy and brain functioning. The zithro and doxy are gradually diminishing overall pain-- except when the evening herx hits. A slow course but with definitive improvement at this point. All this is in addition to a vitamin regimin, thyroid supplement, meds for sleep, energy work and so on. Seems to be workiing. I'll keep you posted. My 14 year old daughter is dx with Lymes, and is really struggling: rock bottom fatigue, brain fog so she can't even read, constant nausea so taking the Abx as well as eating reasonably always difficult. Trying to decide wither a pick line and daily IV is the way to go or try the fluconozole first. Any opinions? Anyone had success with IV treatments? Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 did you do high doses of b12 too? > My Two Cents- > Thought I'd put a foot in here and report on the > continuing results on the Wheldon protocol for Chlam. > Pneumonia (Cpn). I've had CFS and chemical > sensitivities for past 25 years, and ensuing bouts of > candida, allergies, etc. Over the last 2 years my > fatigue, brain fog, and huge bouts of inflammatory > pain, mostly muscles and joints, but even eyes red and > any mucous membranes irritated. Testing for a plethora > of infectious agents came up with high titers of Cpn-- > an organism linked to inflammatory conditions from > heart disease, to ms, to crohns, to arthritis, to CFS > and FMS. > > I was started on Tetracycline for 3 months. The first > week I hit a herx of what I could only call " exquisite > pain " ie beyond description. It certainly confirmed > the tremendous inflammatory nature of the endotoxin of > this organism. I quickly plateaued in improvement. > Some rounds of IV silver helped, but clearly something > else was needed. I discovered Wheldons protocal which > he adapted from the Vanderbilt group to treat his wife > with MS, with great success: doxy & zithro constantly, > with pulsed flagyl for 5 days every three weeks. > > Flagyl was " the bomb " and the feeling of energy and > relief after the first dose was palpable. Clearly some > drag on my system was being abated by the flagyl. > Initially, I could tolerate one tab a week, the worked > up to two tabs for three days. I found the three week > period too long, I would crash by second week, so have > been doing 3 days of flagyl once per week, the zithro > and doxy a constant. I still get significant herx from > the zithro/doxy evening dose, so there's still > extracellular load coming down. > > As hard as flagyl is on my stomach, it makes the > significant difference in improvement: energy and > brain functioning. The zithro and doxy are gradually > diminishing overall pain-- except when the evening > herx hits. A slow course but with definitive > improvement at this point. > All this is in addition to a vitamin regimin, thyroid > supplement, meds for sleep, energy work and so on. > Seems to be workiing. I'll keep you posted. > > My 14 year old daughter is dx with Lymes, and is > really struggling: rock bottom fatigue, brain fog so > she can't even read, constant nausea so taking the Abx > as well as eating reasonably always difficult. Trying > to decide wither a pick line and daily IV is the way > to go or try the fluconozole first. Any opinions? > Anyone had success with IV treatments? > Jim > > > > Quote Link to comment Share on other sites More sharing options...
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