Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 ----- Puvodní zpráva ----- Od: " " <cfsdoc@...> I started the parasite cleanse, and there has not been time for it to work, > but I will keep you posted. The ingredients are black walnut, wormwood, and > cloves, and there are plenty of articles on the net about it. Thanks for keeping us informed. Where can one buy the extracts? Any internet source? Stania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Go to www.dogpile.com and enter the search words " parasite cleanse. " There will be plenty of sources and some interesting articles. A search for " wormwood " also turned up some things of interest. ----- Puvodní zpráva ----- Od: " " <cfsdoc@...> I started the parasite cleanse, and there has not been time for it to work, > but I will keep you posted. The ingredients are black walnut, wormwood, and > cloves, and there are plenty of articles on the net about it. Thanks for keeping us informed. Where can one buy the extracts? Any internet source? Stania This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 There is a list of treatments on Teitelbaum's website, based on patient reporting: https://www.endfatigue.com/home.nsf Message: 24 Date: Wed, 21 Mar 2001 02:43:39 +0100 (MET) From: s Johan Saugstad <a.j.saugstad@...> Subject: Re: List over therapies Could anyone make a comprehensive but simple list over all the relavant therapies for CFS. if someone could do such an excellent and important thing, please send it to the group and to me personally. best andreas __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Hi...I personally think a good diet is best. Some of these over the counter things can cause damage or lull you into a false sense of security. As far as your doctor is concerned, right down every ? you have and take the notebook with you to your appts.. Take them to task and be sure you are seeing a GI or infectious disease doc. Take your time for blood work and the Doctyortitaniumbuttrfly <titaniumbuttrfly@...> wrote: Hi, I am a newcomer to this site.I was diagnosed with hep c two years ago and I have not been able to get over the shock of being diagnosed with this disease.I guess the main reason is not knowing how I got it.I have stopped the alcohol consumption but now I am faced with the decision to take the interferon treatments.My doctor did not suggest this treatment I believe maybe because I did not have any scar tissue therefore the disease was not that bad? (i dont know). I really didnt want to get sicker being that I only have mild symptoms right now.I have heard about a mineral called colloidal silver and some people that I know are swearing by it. Colloidal silver is suppose to boost the immune system. If anyone has any suggestions on ways to feel better with this disease please let me know.I just wish that I could quit being so tired and the rundown feelin makes it hard to work even a 40 hour week job. Thanks...... God Bless all. Take care, Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 wonderful news! thanks for sharing! jenny --- Mac Caldwell <mcaldwell80@...> wrote: > After being diagnosed with cancer at the base of my > tongue I went to a > major cancer clinic and they wanted to cut out the > back of my tongue, > part of the muscle in my neck, and possibly some of > my jaw bone. Then > they wanted to proceed with chemo and radiation. I > went for a second > opinion and he merely looked over the original > papers and agreed with > the first opinion without ever looking at my tongue. > I went to Mexico > and received treatment. I was there for two weeks, > came back and no > one could find any cancer. But it did come back 2 > years later and I > found another treatment at another clinic using > chemo and radiation > (rad/plat treatment). Now I'm almost 5 years out and > no cancer, all of > my tongue, normal taste, some dry mouth, but > living well. I can only offer to anyone to get > second opinions, look > at all options before starting any treatments. It's > hard to do but > remember, it's your life. It's your choice and you > do have the right > to make those choices. > > > > > Immature love is loving someone because you need them, mature love is needing someone because you love them! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2007 Report Share Posted August 19, 2007 I've heard of Tagament being used . . . I wonder if anyone has tried Singulair and Tagament together? Anyone know???? Hannah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2007 Report Share Posted August 19, 2007 My son has been on Tagament since April. Since then, his fevers are not as high and the episode are only 2 days at the max! He started fevering today so I hope I didn't jinx him by saying that they are only 2 days!!! B'ham, Al Mom to Conyers (2 1/2 years) fevering since 15 months Maddie (2 1/2 years) > > From: Amy livingston <twotwinsm@...> > Date: 2007/08/19 Sun PM 05:38:15 EDT > > Subject: Treatments > > Out of the four children I have, I only have one child that has this " disorder. " After serveral unecessary test my pediatrician sent us to Vanderbuilt Children's Hospital, whom supposely are leading research on this " disorder, " and they have a small clinical trial going where they prescribe children tagament and since this his fevers are fewer and less frequent. The fevers do not get as high as they use to around 106, and his fevers dont last as long. Has anyone else tried this for their child. > > > > --------------------------------- > Looking for a deal? Find great prices on flights and hotels with FareChase. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2007 Report Share Posted August 19, 2007 Isn't Cimetidine...Tagament? Just another name for it? hannahlsmith73 <hlsmith73@...> wrote: I've heard of Tagament being used . . . I wonder if anyone has tried Singulair and Tagament together? Anyone know???? Hannah --------------------------------- Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2007 Report Share Posted August 19, 2007 I asked 's ID doctor if we could use both of them and she told me no...cause then we couldn't tell which one was working? She wanted clear results. But I wonder if doctors will consider it on children who have been on one or the other for some time already? Both drugs make sense to me, cause they would help different symptoms of the disorder. I'm not a Doctor though. Maybe they can't be mixed? hannahlsmith73 <hlsmith73@...> wrote: I've heard of Tagament being used . . . I wonder if anyone has tried Singulair and Tagament together? Anyone know???? Hannah --------------------------------- Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Hi there We only go to pediatrician with every episode to rule out other infections prior to giving prednisone. We then have blood tests done every time. But this is only because we don't have a final diagnosis yet and the more blood work we have (the results are different every time!) the more likely we are to finally have a diagnosis. We're getting more and more sure it's . I have an appointment with our ped rheum in Sep to discuss tonsillectomy. I'm a bit worried because Emma is still so little (turned 2 in July) and also she never has any actual throat involvement during her episodes, but if it works and I don't do it I'll be regretting it too! Difficult decision. Hope this helps! Inga Re: Re: Treatments We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************ ********* ********* ******** Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 well when my son, Blake, started having his fevers I went to his Pediatrician every single time. Because of our family history we did a reflux test on his kidney's, nothing was wrong, he then did a ct of sinus, nothing wrong, he then sent us to see an immunologist, however this was when he wasn't having a fever and his immune system came back normal. Blake would also have febral seizures with his so after several trips to the ER, and the Peds office he sent us to an infectious disease control Dr. where I live, the only thing she could come up with was the Mediterranean fever, but since we are not of Mederterranian decent that diagnosis didn't fit. Our Pediatrician sent us to Vanderbilt Children's Hospital, and after doing a work up on him, they came up with him having this " disorder. " They initially put him on steroids that he was to take at onset of a fever, well my pediatrician didn't like the ideal of Blake being on steroids for over a year, sent us back to Vandy, then they started him on the trial of Tagament... and now his fevers dont come no where near as often as they did, which was every 21 days, and his only had one febral seizure since starting the tagament. mletherton@... wrote: We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Amy, I think we have spoken before, but I was wondering who your son saw at Vandy. My four year old son saw Dr. Crow and he gave us prednisone, which I haven't used either, and sent us on our way to outgrow the fevers. I was so disappointed in the visit. Did you have a better experience? Pam Mattox lin, Tennessee Mom to (4 and periodic fevers since 8 months) and two little sisters > > Out of the four children I have, I only have one child that has this " disorder. " After serveral unecessary test my pediatrician sent us to Vanderbuilt Children's Hospital, whom supposely are leading research on this " disorder, " and they have a small clinical trial going where they prescribe children tagament and since this his fevers are fewer and less frequent. The fevers do not get as high as they use to around 106, and his fevers dont last as long. Has anyone else tried this for their child. > > > > --------------------------------- > Looking for a deal? Find great prices on flights and hotels with FareChase. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Hi, Do you really want to put your child through a surgery because she has fevers. I understand that these fevers are difficult on the child as well as the parents, and its hard to see your child ill, but to undergo surgery when there are medications, to help for right now. Majority of children with this disorder grow out of it. Removing a child's tonsils just seem unnecessary. Your the mother and only you know what is best for your child, so just follow what you think is best, not what any physician says. Inga Bothner <ingabothner@...> wrote: Hi there We only go to pediatrician with every episode to rule out other infections prior to giving prednisone. We then have blood tests done every time. But this is only because we don't have a final diagnosis yet and the more blood work we have (the results are different every time!) the more likely we are to finally have a diagnosis. We're getting more and more sure it's . I have an appointment with our ped rheum in Sep to discuss tonsillectomy. I'm a bit worried because Emma is still so little (turned 2 in July) and also she never has any actual throat involvement during her episodes, but if it works and I don't do it I'll be regretting it too! Difficult decision. Hope this helps! Inga Re: Re: Treatments We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************ ********* ********* ******** Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Pam, I had to be a little up front and forceful in what I wanted in regards to my sons treatment, and luckily I have a fantastic Pediatrician in my corner who has helped me in ever aspect to attain the right treatment for my son. My initial visit at Vandy I think we saw three different Dr's that day however he happened to have a fever on the day of our visit, so they did run some test on him there, and yes initially they did just suggest the steroid, however after about a year of this enough was enough. I am completely aware of what long term use of steroids do to you, and my pediatrician concurred with the decision of pulling him off of it. We went back to Vandy and after discussing my concerns as well as my pediatrician voiced his concerns they put him on Tagament. Now he has fevers maybe every three months if that much and they do not get as high as they use to nor do they last as long. I am very pleased with the Tagament. pammattox1 <pammattox@...> wrote: Amy, I think we have spoken before, but I was wondering who your son saw at Vandy. My four year old son saw Dr. Crow and he gave us prednisone, which I haven't used either, and sent us on our way to outgrow the fevers. I was so disappointed in the visit. Did you have a better experience? Pam Mattox lin, Tennessee Mom to (4 and periodic fevers since 8 months) and two little sisters > > Out of the four children I have, I only have one child that has this " disorder. " After serveral unecessary test my pediatrician sent us to Vanderbuilt Children's Hospital, whom supposely are leading research on this " disorder, " and they have a small clinical trial going where they prescribe children tagament and since this his fevers are fewer and less frequent. The fevers do not get as high as they use to around 106, and his fevers dont last as long. Has anyone else tried this for their child. > > > > --------------------------------- > Looking for a deal? Find great prices on flights and hotels with FareChase. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Pam, I had to be a little up front and forceful in what I wanted in regards to my sons treatment, and luckily I have a fantastic Pediatrician in my corner who has helped me in ever aspect to attain the right treatment for my son. My initial visit at Vandy I think we saw three different Dr's that day however he happened to have a fever on the day of our visit, so they did run some test on him there, and yes initially they did just suggest the steroid, however after about a year of this enough was enough. I am completely aware of what long term use of steroids do to you, and my pediatrician concurred with the decision of pulling him off of it. We went back to Vandy and after discussing my concerns as well as my pediatrician voiced his concerns they put him on Tagament. Now he has fevers maybe every three months if that much and they do not get as high as they use to nor do they last as long. I am very pleased with the Tagament. pammattox1 <pammattox@...> wrote: Amy, I think we have spoken before, but I was wondering who your son saw at Vandy. My four year old son saw Dr. Crow and he gave us prednisone, which I haven't used either, and sent us on our way to outgrow the fevers. I was so disappointed in the visit. Did you have a better experience? Pam Mattox lin, Tennessee Mom to (4 and periodic fevers since 8 months) and two little sisters > > Out of the four children I have, I only have one child that has this " disorder. " After serveral unecessary test my pediatrician sent us to Vanderbuilt Children's Hospital, whom supposely are leading research on this " disorder, " and they have a small clinical trial going where they prescribe children tagament and since this his fevers are fewer and less frequent. The fevers do not get as high as they use to around 106, and his fevers dont last as long. Has anyone else tried this for their child. > > > > --------------------------------- > Looking for a deal? Find great prices on flights and hotels with FareChase. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Hi Amy Thanks for your input! As you say everyone sees it differently and it's a personal decision. To me and my husband, a small, straight-forward surgery that has a high potential of curing her once and for all, is preferable to her being sick every 3 weeks AND having to be on medication all the time. I hate giving her the prednisone because I worry about the long-term effects of steroids, no matter how often my ped reassures me that 4mls every 3 weeks is not a problem. But I also hate putting her through a week of 4-hourly heavy fever medication. So we'll most likely get her to have a T & A before the end of the year. I'll keep you all posted! Take care Inga Re: Re: Treatments We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************ ********* ********* ******** Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Amy - Please don't judge others on their decisions. This is a support group. We already have to deal with a slew of folks from relatives to friends to doctors that don't understand this disorder. Many on this site feel that the side effects of the medicines are far worse than a one-time surgery that most of our parents have had. Obviously Inga is already having a difficult time making a decision, but please treat others in a supportive manner rather than telling her that it is " unnecessary " or using words such as " putting her through a surgery " . Inga - as for me, I'm going through the same decision making process - and it sounds like our daughters are the same age - mine was born 7/20/05. I understand exactly what you are going through. I keep wondering - " what if I wait until she's 5 years old and really needs the surgery and then it cures the episodes completely - I'll kick myself. " I wish you the best in your decision making process. Ginger Daughter - le, Just Turned 2 years old (fevering since 7 months, diagnosed at 15 months) Son - Jay, 3 months old ________________________________ From: [mailto: ] On Behalf Of Amy livingston Sent: Tuesday, August 21, 2007 10:49 AM Subject: Re: Re: Treatments Hi, Do you really want to put your child through a surgery because she has fevers. I understand that these fevers are difficult on the child as well as the parents, and its hard to see your child ill, but to undergo surgery when there are medications, to help for right now. Majority of children with this disorder grow out of it. Removing a child's tonsils just seem unnecessary. Your the mother and only you know what is best for your child, so just follow what you think is best, not what any physician says. Inga Bothner <ingabothner@... <mailto:ingabothner%40.co.uk> > wrote: Hi there We only go to pediatrician with every episode to rule out other infections prior to giving prednisone. We then have blood tests done every time. But this is only because we don't have a final diagnosis yet and the more blood work we have (the results are different every time!) the more likely we are to finally have a diagnosis. We're getting more and more sure it's . I have an appointment with our ped rheum in Sep to discuss tonsillectomy. I'm a bit worried because Emma is still so little (turned 2 in July) and also she never has any actual throat involvement during her episodes, but if it works and I don't do it I'll be regretting it too! Difficult decision. Hope this helps! Inga Re: Re: Treatments We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************ ********* ********* ******** Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Hi Ginger Thanks so much for your support!!!! Emma was born on 26th July 2005 so our little girls are 6 days apart! Shame that we live half-way across the globe from each other. You're right it's a hard decision to make but with every day, and every episode, I am more certain that surgery is the right way to go. She is so miserable when she gets these fevers and I feel it's very disruptive for her little life. And everyone feels differently about medication, I just don't want to try singulair or tegament if I can help it as I don't want to medicate her every day of her life. BUT that doesn't meean it's not right for other people, and it's wonderful to hear stories where that medication has helped make these little ones lives a little better. Take care! Inga Re: Re: Treatments We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************ ********* ********* ******** Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Ginger, I am not judging anyone and their decision to have surgery on their child, all I am saying is that there are other alternatives other than steroids. I agree steroids has side effects, and shouldn't be used long term, but their are other avenues to take, as opposed to surgery. When making about having surgery is no laughing matter and should be taken very seariously. I am just stating that doctors should be trying other medications such as tagament and singulair, before suggesting surgery. Surgery for any person regardless of their diagnosis should always be used as a last resort. I am sorry if you dont feel the same, each person is entitled to their own opinions, and as this being a support group, not everyone person is going to agree to the same method of treatment, hence the reason we discuss different methods... I just know from experience how pushy some physicians came be, and with this in mind it is supportive to let someone know that surgery isn't the only alternative. " Hackett, Ginger " <ginger.hackett@...> wrote: Amy - Please don't judge others on their decisions. This is a support group. We already have to deal with a slew of folks from relatives to friends to doctors that don't understand this disorder. Many on this site feel that the side effects of the medicines are far worse than a one-time surgery that most of our parents have had. Obviously Inga is already having a difficult time making a decision, but please treat others in a supportive manner rather than telling her that it is " unnecessary " or using words such as " putting her through a surgery " . Inga - as for me, I'm going through the same decision making process - and it sounds like our daughters are the same age - mine was born 7/20/05. I understand exactly what you are going through. I keep wondering - " what if I wait until she's 5 years old and really needs the surgery and then it cures the episodes completely - I'll kick myself. " I wish you the best in your decision making process. Ginger Daughter - le, Just Turned 2 years old (fevering since 7 months, diagnosed at 15 months) Son - Jay, 3 months old ________________________________ From: [mailto: ] On Behalf Of Amy livingston Sent: Tuesday, August 21, 2007 10:49 AM Subject: Re: Re: Treatments Hi, Do you really want to put your child through a surgery because she has fevers. I understand that these fevers are difficult on the child as well as the parents, and its hard to see your child ill, but to undergo surgery when there are medications, to help for right now. Majority of children with this disorder grow out of it. Removing a child's tonsils just seem unnecessary. Your the mother and only you know what is best for your child, so just follow what you think is best, not what any physician says. Inga Bothner <ingabothner@... <mailto:ingabothner%40.co.uk> > wrote: Hi there We only go to pediatrician with every episode to rule out other infections prior to giving prednisone. We then have blood tests done every time. But this is only because we don't have a final diagnosis yet and the more blood work we have (the results are different every time!) the more likely we are to finally have a diagnosis. We're getting more and more sure it's . I have an appointment with our ped rheum in Sep to discuss tonsillectomy. I'm a bit worried because Emma is still so little (turned 2 in July) and also she never has any actual throat involvement during her episodes, but if it works and I don't do it I'll be regretting it too! Difficult decision. Hope this helps! Inga Re: Re: Treatments We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************ ********* ********* ******** Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 I think one needs to keep their personal opinions regarding certain treatments to themselves when posting on this site. Everyone has a right to their own opinion but one should not be made to feel bad or guilty about trying a treatment that might help their child. For me and my daughter their isn't a single medication out there that has helped; cimetidine for 1 yr with nothing, prednisone made her episodes every 5 days instead of 28 and motrin or tylenol do not keep her 105-107 degree temps down. Alyssa did get the sore throats really bad with every episode and that would last longer than the fever. There isn't much about this disease that is known but if removing the tonsils can eliminate my child from getting sick every month sometimes twice a month for the next how many years, well it's worth a shot. Tammielee Re: Re: Treatments We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************ ********* ********* ******** Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2007 Report Share Posted August 23, 2007 I thought this site was a support group, not to knock other parents care giving tactics. Do what works for your child. You know them, you know what works, what doesn't work and be the best patient advocate you can be for someone who cannot have a medical voice. But to comment on other parents ways of dealing with a complex, and often elusive and mysterious condition like this is not supportive whatsoever. Please try to remember the reason this site was developed. Information and sharing, support and care for one another. _____ From: [mailto: ] On Behalf Of Tammielee Rebel Sent: Wednesday, August 22, 2007 11:29 PM Subject: Re: Re: Treatments I think one needs to keep their personal opinions regarding certain treatments to themselves when posting on this site. Everyone has a right to their own opinion but one should not be made to feel bad or guilty about trying a treatment that might help their child. For me and my daughter their isn't a single medication out there that has helped; cimetidine for 1 yr with nothing, prednisone made her episodes every 5 days instead of 28 and motrin or tylenol do not keep her 105-107 degree temps down. Alyssa did get the sore throats really bad with every episode and that would last longer than the fever. There isn't much about this disease that is known but if removing the tonsils can eliminate my child from getting sick every month sometimes twice a month for the next how many years, well it's worth a shot. Tammielee Re: Re: Treatments We used TAgament for a little while...I didn't see a difference. She still had the same level of symptoms...no difference. What type of doctor do you go to with ? We just go to our regular PED. doctor. I've been reading about blood tests, and this that and the other that the kids have done....besides the first initial blood work ups, we don't have that much blood work done any more. I guess I always feel that I'm not doing all I should be doing. When do you take your child to doctor, and what normally goes on during a visit? ************ ********* ********* ******** Get a sneak peek of the all-new AOL at http://discover. aol.com/memed/ aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Ian, Dont feel so bad, giving to your parents was out of your control--just as your contracting this was out of your control. I recently saw Dr. Kolb--i have been feeling better lately. One thing that I do everyday is take an infrared sauna, it has helped tremendously--my back used to be my worst area--now it is absolutely clear. Dr. kolb will give you some good things to help you clear this up. You probably wont need to be on as many things as you are currently taking. Do you find that some of these supplements make you feel like crap? I did! When is your apointment?? would like to compare rx's you get from dr. kolb. From: Ian <tenchantre@...>bird mites Sent: Sunday, March 29, 2009 12:22:38 AMSubject: treatments Hi everyone,I can read the list from my phone and always have so much to say, but precious little computer time right now. I'm coming up on a year of this affliction. The worst part by far has been giving it to my parents. I've tried a lot of different things, but the more that I read, the more my energies go towards fighting the causes of this instead of discomfort. While I'm waiting to see Dr. Kolb and get Dr. Staninger's analysis, I've decided to begin Blue Skies' protcol. I'm just a few days into it, with some additions of my own. I have also changed my diet to 90% vegetarian, and no alcohol whatsoever (big change for me). My current internals if anyone's interested. I am still trying to figure out dosages...Opaline dry oxyLugol's solutionNeem pillsKelp pillsOlive leaf extractTeaselSarsparillaRevoxil (double dose)Kyolic yeast-free garlicSuper Green pills (Trader Joes)GraviolaVitamin D3Oreganol Super Strength pills Nature's Way oregano oil pillsNow Multivitamins with green superfoodsClove pillsMilk thistleCat's clawApple cider vinegar capsules (a LOT of these)MicrohydrinTriphalaPau d'arcoVitamin C time-release (4 grams)Multiple for Her (Target brand)Grape seed extractFolic acidColon cleanse program DE before bedGrapefruit seed extractNow Foods Candida Clear FormulaNACKyo-Dophilus by KyolicPlus: lots of lemon+distilled water, mineral water, pineapple juice and V8).Skin treatments: ESP soap in the daytimeOil blend in the evening (oregano, neem, clove, wormwood, tea tree, olive oil blended with ESP products and/or Badger Ant-Bug balm)Environment:Vick's cool mist vaporizer w/ Hydrogen peroxide (this seesm to give a lot of peace)Thera pure air cleaner with germicidal light (Target)Sprays...I spray a lot of peroxide, a lot of neem and too much menthol. Sometimes nothing works.Car: burning menthol every night, putting a new sheet of painter's plastic on the seat every day. Cleaning:Borax+ hydrogen peroxide on floorsSimple Green d Pro 3 (hospital strength germicidal/fungicid al cleaner)http://www.simplegreen.com/products_pro_3.php for bathroom, etc.peace to all of you,Ian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 I'm still trying to find the infrared sauna. There are infrared beds that I can do daily. Once I've paid for the trip to Kolb I will get into that. (And other less fun stuff like more colonics.)The supplements make me feel great. I kid you not. From: Rush Tessman <rushtessman@...>Subject: Re: treatmentsbird mites Date: Sunday, March 29, 2009, 1:40 AM Ian, Dont feel so bad, giving to your parents was out of your control--just as your contracting this was out of your control. I recently saw Dr. Kolb--i have been feeling better lately. One thing that I do everyday is take an infrared sauna, it has helped tremendously--my back used to be my worst area--now it is absolutely clear. Dr. kolb will give you some good things to help you clear this up. You probably wont need to be on as many things as you are currently taking. Do you find that some of these supplements make you feel like crap? I did! When is your apointment?? would like to compare rx's you get from dr. kolb. From: Ian <tenchantre@...>bird mites Sent: Sunday, March 29, 2009 12:22:38 AMSubject: treatments Hi everyone,I can read the list from my phone and always have so much to say, but precious little computer time right now. I'm coming up on a year of this affliction. The worst part by far has been giving it to my parents. I've tried a lot of different things, but the more that I read, the more my energies go towards fighting the causes of this instead of discomfort. While I'm waiting to see Dr. Kolb and get Dr. Staninger's analysis, I've decided to begin Blue Skies' protcol. I'm just a few days into it, with some additions of my own. I have also changed my diet to 90% vegetarian, and no alcohol whatsoever (big change for me). My current internals if anyone's interested. I am still trying to figure out dosages...Opaline dry oxyLugol's solutionNeem pillsKelp pillsOlive leaf extractTeaselSarsparillaRevoxil (double dose)Kyolic yeast-free garlicSuper Green pills (Trader Joes)GraviolaVitamin D3Oreganol Super Strength pills Nature's Way oregano oil pillsNow Multivitamins with green superfoodsClove pillsMilk thistleCat's clawApple cider vinegar capsules (a LOT of these)MicrohydrinTriphalaPau d'arcoVitamin C time-release (4 grams)Multiple for Her (Target brand)Grape seed extractFolic acidColon cleanse program DE before bedGrapefruit seed extractNow Foods Candida Clear FormulaNACKyo-Dophilus by KyolicPlus: lots of lemon+distilled water, mineral water, pineapple juice and V8).Skin treatments: ESP soap in the daytimeOil blend in the evening (oregano, neem, clove, wormwood, tea tree, olive oil blended with ESP products and/or Badger Ant-Bug balm)Environment:Vick's cool mist vaporizer w/ Hydrogen peroxide (this seesm to give a lot of peace)Thera pure air cleaner with germicidal light (Target)Sprays...I spray a lot of peroxide, a lot of neem and too much menthol. Sometimes nothing works.Car: burning menthol every night, putting a new sheet of painter's plastic on the seat every day. Cleaning:Borax+ hydrogen peroxide on floorsSimple Green d Pro 3 (hospital strength germicidal/fungicid al cleaner)http://www.simplegreen.com/products_pro_3.php for bathroom, etc.peace to all of you,Ian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 That is great that the supplements make you feel good, I've had to go to er for the core artemisa blend, I really thought that it would probably be great against the bugs--since it had such an ill effect on me. when do you see kolb?? let me know how it goes From: "tenchantre@..." <tenchantre@...>bird mites Sent: Sunday, March 29, 2009 12:53:38 AMSubject: Re: treatments I'm still trying to find the infrared sauna. There are infrared beds that I can do daily. Once I've paid for the trip to Kolb I will get into that. (And other less fun stuff like more colonics.)The supplements make me feel great. I kid you not. From: Rush Tessman <rushtessman>Subject: Re: treatmentsbird mitesDate: Sunday, March 29, 2009, 1:40 AM Ian, Dont feel so bad, giving to your parents was out of your control--just as your contracting this was out of your control. I recently saw Dr. Kolb--i have been feeling better lately. One thing that I do everyday is take an infrared sauna, it has helped tremendously- -my back used to be my worst area--now it is absolutely clear. Dr. kolb will give you some good things to help you clear this up. You probably wont need to be on as many things as you are currently taking. Do you find that some of these supplements make you feel like crap? I did! When is your apointment?? would like to compare rx's you get from dr. kolb. From: Ian <tenchantre (DOT) com>bird mitesSent: Sunday, March 29, 2009 12:22:38 AMSubject: treatments Hi everyone,I can read the list from my phone and always have so much to say, but precious little computer time right now. I'm coming up on a year of this affliction. The worst part by far has been giving it to my parents. I've tried a lot of different things, but the more that I read, the more my energies go towards fighting the causes of this instead of discomfort. While I'm waiting to see Dr. Kolb and get Dr. Staninger's analysis, I've decided to begin Blue Skies' protcol. I'm just a few days into it, with some additions of my own. I have also changed my diet to 90% vegetarian, and no alcohol whatsoever (big change for me). My current internals if anyone's interested. I am still trying to figure out dosages...Opaline dry oxyLugol's solutionNeem pillsKelp pillsOlive leaf extractTeaselSarsparillaRevoxil (double dose)Kyolic yeast-free garlicSuper Green pills (Trader Joes)GraviolaVitamin D3Oreganol Super Strength pills Nature's Way oregano oil pillsNow Multivitamins with green superfoodsClove pillsMilk thistleCat's clawApple cider vinegar capsules (a LOT of these)MicrohydrinTriphalaPau d'arcoVitamin C time-release (4 grams)Multiple for Her (Target brand)Grape seed extractFolic acidColon cleanse program DE before bedGrapefruit seed extractNow Foods Candida Clear FormulaNACKyo-Dophilus by KyolicPlus: lots of lemon+distilled water, mineral water, pineapple juice and V8).Skin treatments: ESP soap in the daytimeOil blend in the evening (oregano, neem, clove, wormwood, tea tree, olive oil blended with ESP products and/or Badger Ant-Bug balm)Environment:Vick's cool mist vaporizer w/ Hydrogen peroxide (this seesm to give a lot of peace)Thera pure air cleaner with germicidal light (Target)Sprays...I spray a lot of peroxide, a lot of neem and too much menthol. Sometimes nothing works.Car: burning menthol every night, putting a new sheet of painter's plastic on the seat every day. Cleaning:Borax+ hydrogen peroxide on floorsSimple Green d Pro 3 (hospital strength germicidal/fungicid al cleaner)http://www.simplegr een.com/products _pro_3.php for bathroom, etc.peace to all of you,Ian Quote Link to comment Share on other sites More sharing options...
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