Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 , I would be interested in your remedies/preventatives also. Thanks, Tina Woosley, mother of Steph yo 17 wcf Holistic Methods , Tell me more about your research of holistic healing methods and products. Can you list the three most helpful remedies/preventatives? Does anyone else have remedies that worked for them? Thanks, Jane Lindrum Mom of Kate, 4 yowcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Sure. First, crataegus/hawthorn is definitely a CF-specific remedy, and I think it is probably the biggest single factor in why is doing so well. We use it on a daily basis. I have taken Reiki classes and had an attunement so I am now able to give Reiki. This is an energetic healing technique. It is very comforting and helps the body rebalance and helps it along its healing process. And we use homeopathy. I did a lot of reading, but for colds and basic stuff, refer most often to a book by Dana Ullman, Homeopathic Medicine for Children and Infants. The particular remedy you give depends on the person's individual symptoms so I can't say " Allium cepa " or whatever. But if you get the book and a basic kit of remedies you will have some tools for basic colds, flu, sore throats, and so on. Those are my big three - crataegus, Reiki and homeopathy. When a cold is coming on, we also give extra vitamin C, cook everything with tons of garlic, push lots of water, rest. Sometimes I also use astragalus, a Chinese immune-strengthening herb. I buy the root dried and sliced (looks like tongue depressors) and cook it in with soups (remove before serving). does not have a lot of chronic inflammation or else I might reconsider this particular remedy as I think it's not to be used in the later stages of inflammation but only as a preventative and in the beginning stages of illness, not when inflammation/fevers have gone on for a while. We also use essential oils, but this is an area I feel the need to stress caution. Essential oils are *very* strong and if you choose to go this route do lots of research yourself! I love Ann Worwood's Aromatherapy for the Healthy Child as a place to start. Lavender is a relatively safe EO to begin with. Mostly won't take tinctures or extra pills, he is very stubborn about taking medications. We also supplement with extra magnesium, Animal Parade multivitamins, and DHA when we can. )O( mama to , 2yo, w/CF, and , 4yo, no CF Holistic Methods , Tell me more about your research of holistic healing methods and products. Can you list the three most helpful remedies/preventatives? Does anyone else have remedies that worked for them? Thanks, Jane Lindrum Mom of Kate, 4 yowcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 In a message dated 8/14/2003 5:46:17 PM Central Daylight Time, Torstenkrafft@... writes: > Crataegus What is Crataegus? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 You are so right! Love, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Hi, I just want to second 's mail, we've seen good results with a small dosage of Crataegus Mother Tincture too. And if you wonder about the missing time frame in her post, she wanted to write " 2 1/2 YEARS " , I think we started at about the same time. Peace Torsten, dad of Fiona 6wcf and Sebastian newborn wocf e-mail: torstenkrafft@... Re: Holistic Methods > Hi all, > > I just wanted to add, after reading 's and Kim's posts, that > I've seen amazing results on Agustin, after almost 2 1/2 now, on a > daily low dosage of Crataegus Mother Tincture. > > His digestive function has ameliorated, and I certainly believe that > also his lung function has improved. He had his last lung x-ray last > March, and the Doctor said that those images didn't seem to come from > the lungs of a kid wcf. > > BUT PLEASE, if you intend to give this therapy a try, I strongly > recommend that you read some info from the Crataegus group archive v- > e-r-y c-a-r-e-f-u-l-l-y. Especially the messages from the first > two months. The appropriate dosage is not easy to find, especially > on wee ones. Too much of the substances contained in Crataegus may > lead to *undesired* results. It is an *herbal* therapy, which > certainly sounds like " gentle " , but *herbal* does not necessarily > mean *innoucous*. > > > > , mom of Agustin > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 > What is Crataegus? Deb A The latin name of hawthorne. For further info please join the list below http://groups.yahoo.com/group/crataegus/ Peace Torsten, dad of Fiona 6wcf and Sebastian newborn wocf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 And thanks for the wonderful, and important, additional information on crataegus! This post really should be saved for those who have questions about the therapy. I barely had the time to post all that we do...and certainly in between caring for a very wily almost-3-yo, didn't have the chance to properly frame the information on crataegus. It is so important to get the dose right...and the specifics are really key here. Not something to just jump into at all! Thanks Kim! )O( mama to , 2yo, w/CF, and , 4yo, no CF Re: Holistic Methods Just want to add to 's note that lots of people who take crataegus have seen amazing results, mostly those that are homozygous Delta f508. Some need taurine along with crataegus for best results. Based on the recent flurry of GSH posts it seems a lot of you were curious about shopping for GSH. and I (and a few others on CF Parents) belong to a specific group where crataegus/hawthorn is studied and discussed. This group (with the exception of one or two people) use a specific type manufactured by a specific company. We did this because the German mother who brought us this information, had good results using this company's crataegus. And we wanted to standardize what everyone was using so we could better share notes and experiences. But each person's dosing is a *very* individual thing, just like enzymes. We don't recommend that you rush out to buy crataegus (hawthorn) off your health food store shelf. You'll likely only end up frustrated and shocked if you follow the bottle directions, instead of the protocal set by Blank, the German mother. Studies by researchers Beate Illeak (can't remember which university she's based) and Pamela Zetlin (at Hopkins) show that flavonoids (particularily quercitin) positively effect the CFTR, making it partially functional. And crataegus is high in quercitin, which is why chose that particular herb. Crataegus is an ancient herb, used for centuries to ameliorate heart and digestive problems. If you do a web search for hawthorn, you'll see it mentioned as a tonic for blood pressure and other cardiac issues. But we study it for its apparent ability to affect the CFTR, and we've seen first hand how it greatly effects digestion. Many who take it have been able to lower (sometimes drastically lower) enzyme intake, and bowel movements are more closer to normal than what you typically see in pwcf. Thanks for your holistic listing, ! Kim --- " Arcuri Ware " <mamabear@d...> wrote: Sure. First, crataegus/hawthorn is definitely a CF-specific remedy, and I think it is probably the biggest single factor in why is doing so well. We use it on a daily basis. <http://us.adserver.yahoo.com/l?M=259538.3705203.4965331.1261774/D=egrou pmail/S=:HM/A=1712983/rand=662844491> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 , Probably the best thing for you to do is join the crataegus list. crataegus There you will have access to the archives and a group of us who are interested in this kind of thing. It's hard to know what to look for, and every person has to make their own decision based on what is best for her, so we all help each other and share information and results. )O( mama to , 2yo, w/CF, and , 4yo, no CF holistic methods Hi all, I was wondering if some of you could email me off list about the certain methods you all are using to improve your child's lives. I am going to clinic soon and I want to address these methods to 's doctors. Especially about the Hawthorne, it sounds like it really improves digestion. How does one know what to look for when looking at herbs and such? I really want to have all the options available to him. I would really appreciate all your feedback. I have been watching the post and I am quite intrigued that these methods aren't brought up by the doctors themselves, but by parents. I would have figured the doctors would look into improving our children's lives by more means than just medicine, look through all outlets. I am very happy to be a part of this group, so much wide variety of knowledge. Thanks to all who respond.... mommy of 5 years old cf and adhd and no cf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Thanks Torsten for making that clear ... It looked SO SILLY with the missing word " YEARS " !!! I also mispelled the word " innocuous " - I wrote *innoucous* instead, and messed up the " u's " and " o's " . " Harmless " is easier, but it didn't come to my mind. Hope that the idea was understood anyway. I wish I could send to you and your family, and also to those who are affected by such extremely high temperatures in Europe, some cold wind, from our Winter in Buenos Aires. Stay well! > Hi, > > I just want to second 's mail, we've seen good results with a small > dosage of Crataegus Mother Tincture too. And if you wonder about the missing > time frame in her post, she wanted to write " 2 1/2 YEARS " , I think we > started at about the same time. > > Peace > Torsten, dad of Fiona 6wcf and Sebastian newborn wocf > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Hi , I want to thank you for such a nice post. Those of us using " alternative " treatments never really know how other people will understand what we're trying to say. Getting a CF diagnosis (or any chronic illness diagnosis) is scary so naturally, at first we jump for any life preservor to help us hang on. That means putting lots of faith and trust in our CF doctors. Sadly, we know too well that CF care in the US isn't standardized. And there are many doctors that don't seem to understand what we go through, nor do they seem to realize that often many of the " traditional " meds they prescribe harm in the long run or lead to other problems. I applaud you for wanting to take information to your doctor. But I just want you to be prepared and not be discourage in case your doctor isn't open to listening. It all boils down to HOW your doctor was trained AND the doctor's personal philosophy about medicine. If the doctor didn't have an early relationship, interest, or experience with alternative meds and treatments then likely s/he won't know anything about herbs and essential oils, etc. And the s/he may not be interested in learning. It's easier for some people to stick to one path -- traditional medicine. Learning anything new takes time and effort. Practicing and keeping up with traditional medicine may be the only thing your doctor's interest and time schedule allows right now. Many people, including doctors, seem to think alternative meds and treatments is a new area -- sort of like hocus pocus magic -- so it's not worthy of considering. And that's so untrue. If you look at the history of medicine, herbs and oils came first. It was the standard practice of our forefathers and is the foundation of traditional medicine, not the reverse. But in the US, now we have big organizations like the AMA and insurance companies dictating " standard care. " And they are loathe to give up their stance. However, this is slowly changing. Some insurance companies now cover treatments such as biofeedback and acupuncture, which are labeled " alternative " or " complementary " medicine (sure wish they'd cover vitamins, minerals and herbs!). Even the NIH set up an office -- the National Center for Complementary and Alternative Medicine because they recognized so many Americans are going this route. You can view the site at http://nccam.nih.gov/ So again, I just really want to thank you for being so kind, understanding and nonjudgmental in your post. Sometimes I get very hurtful private emails from people on this list and Cystic-L and whenever I've posted suggested that magnesium, taurine or essential oils might help. Their point always seems to be, " Well, if this is so important then why doesn't MY doctor know about it? " It's only because the doctor hasn't yet learned or doesn't want to learn... Doctors are just like the rest of us; we never stop learning. For years my son was only on " traditional " CF and asthma meds along with a good quality multivitamin/mineral and extra A, C, and E. But eventually his health was declining after he started college. I always held my son's doctor in the highest regard; we always worked as a team on his care, discussing everything. When I went to him in 1999 and told him I wanted to start oral GSH and Zithromax, he was open-minded as usual. I know I was lucky because some doctors freak out if they hear you want to try something they know nothing about. The one complaint I always held against this doctor was that he seemed to always compare my son to his other patients. Time and again the staff always commented how much healthier my son was than their other patients. So when my son started declining after he went to college, I think the doctor just shrugged this off as aging and the sad, normal progression of CF. He failed to compare my son against himself, instead comparing him to his other patients. So I faced two options: accept the doctor's stance on the CF progression and let my son progress downward, or turn it around. Since I saw this was all related to college and diet I knew we could turn it around. The people on the Crataegus list can confirm his miraculous recovery after we started adding certain things. And the list of his traditional CF and asthma meds is now the smallest it's been since he was first diagnosed at age 4. Life is good and I feel blessed. Again, thanks for being kind. Based on past experience, lately I've dreaded logging on to read CF Parents mail fearing where this topic might go. Kim Mom of (24 with cf and asthma) and (20 1/2 asthma no cf) --- findacureforcf@a... wrote: Hi all, I was wondering if some of you could email me off list about the certain methods you all are using to improve your child's lives. I am going to clinic soon and I want to address these methods to 's doctors. Especially about the Hawthorne, it sounds like it really improves digestion. How does one know what to look for when looking at herbs and such? I really want to have all the options available to him. I would really appreciate all your feedback. I have been watching the post and I am quite intrigued that these methods aren't brought up by the doctors themselves, but by parents. I would have figured the doctors would look into improving our children's lives by more means than just medicine, look through all outlets. I am very happy to be a part of this group, so much wide variety of knowledge. Thanks to all who respond.... mommy of 5 years old cf and adhd and no cf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Thanks Kim for your nice post also! I read the CF Parents list from time to time, from the Web, and actually from work :-( (shame on me! but everyone knows about my permanent concern on Agustin and his condition ... so, as far as I do my work ok, they won't complain if I surf the web for this purpose). So, if I post a message to CF Parents, I usually do it too fast. In my former message, I forgot to mention, that I let Agustin's CF Doc know about Crataegus, from the very beginning. I printed out a copy of both Dr. Illek's and Mrs. Blank's papers, and gave them to him. I had the chance to discuss this topic ... for about two minutes with Dr. Macri. (Beverly: the Dr. Macri that you've met in Buenos Aires). He didn't take it seriously at first. Whenever we visited with him, he'd ask me to name all the medicines/supplemets Agustin was on. I never omitted to say " Crataegus MT " -- even when it was the last element of the list. Since past March, when Agustin's visit was so good, Dr. Macri has started to take the Crataegus-- and its flavonoids -- more seriously. Mom of Agustin, 3 yo wcf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Dear KIM, I am putting a page on our web site with alternative/holistic meds frequently used by those with CF. As you already know, we have been doing this well for 17 years. Now. The same as we do the compounding & mixing for patients. I only take alternative meds myself & have all my life . BUT .I don't have CF. Sooooooo, if you could-would make a semi list of those you know & have heard folks with CF using & the purpose (garlic-antibotic,etc.). Send to me . I would so very much appreciate it. I have many , but I am afraid I am missing some. I am meeting with the web page gal Tuesday net week at 2.......IF you would, as I said before. I 'll be so thankful to you. It will help so many . This is NOT to say, don't use prescribed MEDS.-------- After all-- we are specialized CF/TX/Diabetes pharmacy. BUT----We really want these other facts out there. Sure will save folks $$$ in some cases. LOVE to you & your big kiddo's . And of course HUGS., GrandmomBEV Re: holistic methods Hi , I want to thank you for such a nice post. Those of us using " alternative " treatments never really know how other people will understand what we're trying to say. Getting a CF diagnosis (or any chronic illness diagnosis) is scary so naturally, at first we jump for any life preservor to help us hang on. That means putting lots of faith and trust in our CF doctors. Sadly, we know too well that CF care in the US isn't standardized. And there are many doctors that don't seem to understand what we go through, nor do they seem to realize that often many of the " traditional " meds they prescribe harm in the long run or lead to other problems. I applaud you for wanting to take information to your doctor. But I just want you to be prepared and not be discourage in case your doctor isn't open to listening. It all boils down to HOW your doctor was trained AND the doctor's personal philosophy about medicine. If the doctor didn't have an early relationship, interest, or experience with alternative meds and treatments then likely s/he won't know anything about herbs and essential oils, etc. And the s/he may not be interested in learning. It's easier for some people to stick to one path -- traditional medicine. Learning anything new takes time and effort. Practicing and keeping up with traditional medicine may be the only thing your doctor's interest and time schedule allows right now. Many people, including doctors, seem to think alternative meds and treatments is a new area -- sort of like hocus pocus magic -- so it's not worthy of considering. And that's so untrue. If you look at the history of medicine, herbs and oils came first. It was the standard practice of our forefathers and is the foundation of traditional medicine, not the reverse. But in the US, now we have big organizations like the AMA and insurance companies dictating " standard care. " And they are loathe to give up their stance. However, this is slowly changing. Some insurance companies now cover treatments such as biofeedback and acupuncture, which are labeled " alternative " or " complementary " medicine (sure wish they'd cover vitamins, minerals and herbs!). Even the NIH set up an office -- the National Center for Complementary and Alternative Medicine because they recognized so many Americans are going this route. You can view the site at http://nccam.nih.gov/ So again, I just really want to thank you for being so kind, understanding and nonjudgmental in your post. Sometimes I get very hurtful private emails from people on this list and Cystic-L and whenever I've posted suggested that magnesium, taurine or essential oils might help. Their point always seems to be, " Well, if this is so important then why doesn't MY doctor know about it? " It's only because the doctor hasn't yet learned or doesn't want to learn... Doctors are just like the rest of us; we never stop learning. For years my son was only on " traditional " CF and asthma meds along with a good quality multivitamin/mineral and extra A, C, and E. But eventually his health was declining after he started college. I always held my son's doctor in the highest regard; we always worked as a team on his care, discussing everything. When I went to him in 1999 and told him I wanted to start oral GSH and Zithromax, he was open-minded as usual. I know I was lucky because some doctors freak out if they hear you want to try something they know nothing about. The one complaint I always held against this doctor was that he seemed to always compare my son to his other patients. Time and again the staff always commented how much healthier my son was than their other patients. So when my son started declining after he went to college, I think the doctor just shrugged this off as aging and the sad, normal progression of CF. He failed to compare my son against himself, instead comparing him to his other patients. So I faced two options: accept the doctor's stance on the CF progression and let my son progress downward, or turn it around. Since I saw this was all related to college and diet I knew we could turn it around. The people on the Crataegus list can confirm his miraculous recovery after we started adding certain things. And the list of his traditional CF and asthma meds is now the smallest it's been since he was first diagnosed at age 4. Life is good and I feel blessed. Again, thanks for being kind. Based on past experience, lately I've dreaded logging on to read CF Parents mail fearing where this topic might go. Kim Mom of (24 with cf and asthma) and (20 1/2 asthma no cf) --- findacureforcf@a... wrote: Hi all, I was wondering if some of you could email me off list about the certain methods you all are using to improve your child's lives. I am going to clinic soon and I want to address these methods to 's doctors. Especially about the Hawthorne, it sounds like it really improves digestion. How does one know what to look for when looking at herbs and such? I really want to have all the options available to him. I would really appreciate all your feedback. I have been watching the post and I am quite intrigued that these methods aren't brought up by the doctors themselves, but by parents. I would have figured the doctors would look into improving our children's lives by more means than just medicine, look through all outlets. I am very happy to be a part of this group, so much wide variety of knowledge. Thanks to all who respond.... mommy of 5 years old cf and adhd and no cf. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Can I just echo you here, ? :-) I too, usually don't have time to post too long a message. I'm home with the little ones and they keep me on my toes. So thanks to everyone who added more complete information to my initial post. And , I hope my message about joining crataegus list wasn't too hasty or felt like a brush-off. We also told 's doctor before we started him on crataegus. He said it would not be harmful in any way that he could see. I guess we are lucky because he and the others on his team actually are quite interested in crataegus as a therapy...more and more as continues to do well. Still, Kim's advice is very wise. (As always!) )O( mama to , 2yo, w/CF, and , 4yo, no CF Re: holistic methods Thanks Kim for your nice post also! I read the CF Parents list from time to time, from the Web, and actually from work :-( (shame on me! but everyone knows about my permanent concern on Agustin and his condition ... so, as far as I do my work ok, they won't complain if I surf the web for this purpose). So, if I post a message to CF Parents, I usually do it too fast. In my former message, I forgot to mention, that I let Agustin's CF Doc know about Crataegus, from the very beginning. I printed out a copy of both Dr. Illek's and Mrs. Blank's papers, and gave them to him. I had the chance to discuss this topic ... for about two minutes with Dr. Macri. (Beverly: the Dr. Macri that you've met in Buenos Aires). He didn't take it seriously at first. Whenever we visited with him, he'd ask me to name all the medicines/supplemets Agustin was on. I never omitted to say " Crataegus MT " -- even when it was the last element of the list. Since past March, when Agustin's visit was so good, Dr. Macri has started to take the Crataegus-- and its flavonoids -- more seriously. Mom of Agustin, 3 yo wcf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Bev, I have some MS Word documents that I occasionally send to people when they ask. Just last week I was editing to make them more clear. I'll go over them again and send to you. BUT, I'm not gonna send the info until you and Lois answer the email I sent you over a week ago. So there! Hah! Nanny nanny boo boo! But just in case neither of you ladies got received that email, I asked Lois if she could obtain Solgar's magnesium amino acid chelate (magnesium glycinate) and stock it in the pharmacy at a price equal to or less than the price offered at Houseofnutrition.com Their price is $12.30 for a 250-ct bottle of 100 mg. tablets. I also sent Lois the link to Albion Labs if she wanted to research their chelated minerals, which is what Solgar uses in that particular magnesium product. Kim > Hi all, I was wondering if some of you could email me off list about > the certain methods you all are using to improve your child's lives. I > am going to clinic soon and I want to address these methods to > 's doctors. Especially about the Hawthorne, it sounds like it > really improves digestion. How does one know what to look for when > looking at herbs and such? I really want to have all the > options available to him. I would really appreciate all your feedback. > I have been watching the post and I am quite intrigued that these > methods aren't brought up by the doctors themselves, but by parents. > I would have figured the doctors would look into improving our > children's lives by more means than just medicine, look through all > outlets. I am very happy to be a part of this group, so much wide > variety of knowledge. Thanks to all who respond.... mommy of > 5 years old cf and adhd and > no cf. > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 KIM I hadn't received that I remember that. post. BUT I copied & gave to LOIS. She will get on it. She felt so bad that she hadn't gotten or lost it or whatever, Her computer has been driving her o.k. We have to put so much on for protection. Then the worm ,well , you know ho that all is . She will get it. bless you!! She will be able to do , I am sure 7 she will have to work up a price. You should just call her toll free 1- some weekday. Got to get. LOVE & HUGS, BEV Re: holistic methods Hi , I want to thank you for such a nice post. Those of us using " alternative " treatments never really know how other people will understand what we're trying to say. Getting a CF diagnosis (or any chronic illness diagnosis) is scary so naturally, at first we jump for any life preservor to help us hang on. That means putting lots of faith and trust in our CF doctors. Sadly, we know too well that CF care in the US isn't standardized. And there are many doctors that don't seem to understand what we go through, nor do they seem to realize that often many of the " traditional " meds they prescribe harm in the long run or lead to other problems. I applaud you for wanting to take information to your doctor. But I just want you to be prepared and not be discourage in case your doctor isn't open to listening. It all boils down to HOW your doctor was trained AND the doctor's personal philosophy about medicine. If the doctor didn't have an early relationship, interest, or experience with alternative meds and treatments then likely s/he won't know anything about herbs and essential oils, etc. And the s/he may not be interested in learning. It's easier for some people to stick to one path -- traditional medicine. Learning anything new takes time and effort. Practicing and keeping up with traditional medicine may be the only thing your doctor's interest and time schedule allows right now. Many people, including doctors, seem to think alternative meds and treatments is a new area -- sort of like hocus pocus magic -- so it's not worthy of considering. And that's so untrue. If you look at the history of medicine, herbs and oils came first. It was the standard practice of our forefathers and is the foundation of traditional medicine, not the reverse. But in the US, now we have big organizations like the AMA and insurance companies dictating " standard care. " And they are loathe to give up their stance. However, this is slowly changing. Some insurance companies now cover treatments such as biofeedback and acupuncture, which are labeled " alternative " or " complementary " medicine (sure wish they'd cover vitamins, minerals and herbs!). Even the NIH set up an office -- the National Center for Complementary and Alternative Medicine because they recognized so many Americans are going this route. You can view the site at http://nccam.nih.gov/ So again, I just really want to thank you for being so kind, understanding and nonjudgmental in your post. Sometimes I get very hurtful private emails from people on this list and Cystic-L and whenever I've posted suggested that magnesium, taurine or essential oils might help. Their point always seems to be, " Well, if this is so important then why doesn't MY doctor know about it? " It's only because the doctor hasn't yet learned or doesn't want to learn... Doctors are just like the rest of us; we never stop learning. For years my son was only on " traditional " CF and asthma meds along with a good quality multivitamin/mineral and extra A, C, and E. But eventually his health was declining after he started college. I always held my son's doctor in the highest regard; we always worked as a team on his care, discussing everything. When I went to him in 1999 and told him I wanted to start oral GSH and Zithromax, he was open-minded as usual. I know I was lucky because some doctors freak out if they hear you want to try something they know nothing about. The one complaint I always held against this doctor was that he seemed to always compare my son to his other patients. Time and again the staff always commented how much healthier my son was than their other patients. So when my son started declining after he went to college, I think the doctor just shrugged this off as aging and the sad, normal progression of CF. He failed to compare my son against himself, instead comparing him to his other patients. So I faced two options: accept the doctor's stance on the CF progression and let my son progress downward, or turn it around. Since I saw this was all related to college and diet I knew we could turn it around. The people on the Crataegus list can confirm his miraculous recovery after we started adding certain things. And the list of his traditional CF and asthma meds is now the smallest it's been since he was first diagnosed at age 4. Life is good and I feel blessed. Again, thanks for being kind. Based on past experience, lately I've dreaded logging on to read CF Parents mail fearing where this topic might go. Kim Mom of (24 with cf and asthma) and (20 1/2 asthma no cf) --- findacureforcf@a... wrote: Hi all, I was wondering if some of you could email me off list about the certain methods you all are using to improve your child's lives. I am going to clinic soon and I want to address these methods to 's doctors. Especially about the Hawthorne, it sounds like it really improves digestion. How does one know what to look for when looking at herbs and such? I really want to have all the options available to him. I would really appreciate all your feedback. I have been watching the post and I am quite intrigued that these methods aren't brought up by the doctors themselves, but by parents. I would have figured the doctors would look into improving our children's lives by more means than just medicine, look through all outlets. I am very happy to be a part of this group, so much wide variety of knowledge. Thanks to all who respond.... mommy of 5 years old cf and adhd and no cf. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 I don't know how to get to the archives. Is there a website for this e-mail group too??? Can anyone tell me how to get to it.....Thanks~ Re: holistic methods > > > Hi , > > I want to thank you for such a nice post. Those of us using > " alternative " treatments never really know how other people will > understand what we're trying to say. > > Getting a CF diagnosis (or any chronic illness diagnosis) is scary so > naturally, at first we jump for any life preservor to help us hang > on. That means putting lots of faith and trust in our CF doctors. > > Sadly, we know too well that CF care in the US isn't standardized. And > there are many doctors that don't seem to understand what we go > through, nor do they seem to realize that often many of the > " traditional " meds they prescribe harm in the long run or lead to > other problems. > > I applaud you for wanting to take information to your doctor. But I > just want you to be prepared and not be discourage in case your doctor > isn't open to listening. It all boils down to HOW your doctor was > trained AND the doctor's personal philosophy about medicine. > > If the doctor didn't have an early relationship, interest, or > experience with alternative meds and treatments then likely s/he won't > know anything about herbs and essential oils, etc. And the s/he may > not be interested in learning. It's easier for some people to stick to > one path -- traditional medicine. Learning anything new takes time and > effort. Practicing and keeping up with traditional medicine may be the > only thing your doctor's interest and time schedule allows right now. > > Many people, including doctors, seem to think alternative meds and > treatments is a new area -- sort of like hocus pocus magic -- so it's > not worthy of considering. > > And that's so untrue. If you look at the history of medicine, herbs > and oils came first. It was the standard practice of our forefathers > and is the foundation of traditional medicine, not the reverse. > > But in the US, now we have big organizations like the AMA and > insurance companies dictating " standard care. " And they are loathe to > give up their stance. > > However, this is slowly changing. Some insurance companies now cover > treatments such as biofeedback and acupuncture, which are labeled > " alternative " or " complementary " medicine (sure wish they'd cover > vitamins, minerals and herbs!). > > Even the NIH set up an office -- the National Center for Complementary > and Alternative Medicine because they recognized so many Americans are > going this route. You can view the site at http://nccam.nih.gov/ > > So again, I just really want to thank you for being so kind, > understanding and nonjudgmental in your post. Sometimes I get > very hurtful private emails from people on this list and Cystic-L and > whenever I've posted suggested that magnesium, taurine or essential > oils might help. Their point always seems to be, " Well, if this is so > important then why doesn't MY doctor know about it? " > > It's only because the doctor hasn't yet learned or doesn't want to > learn... Doctors are just like the rest of us; we never stop learning. > > For years my son was only on " traditional " CF and asthma meds along > with a good quality multivitamin/mineral and extra A, C, and E. But > eventually his health was declining after he started college. > > I always held my son's doctor in the highest regard; we always worked > as a team on his care, discussing everything. When I went to him in > 1999 and told him I wanted to start oral GSH and Zithromax, he was > open-minded as usual. I know I was lucky because some doctors freak > out if they hear you want to try something they know nothing about. > > The one complaint I always held against this doctor was that he seemed > to always compare my son to his other patients. Time and again the > staff always commented how much healthier my son was than their other > patients. So when my son started declining after he went to college, I > think the doctor just shrugged this off as aging and the sad, normal > progression of CF. He failed to compare my son against himself, > instead comparing him to his other patients. > > So I faced two options: accept the doctor's stance on the CF > progression and let my son progress downward, or turn it around. Since > I saw this was all related to college and diet I knew we could turn it > around. > > The people on the Crataegus list can confirm his miraculous recovery > after we started adding certain things. And the list of his > traditional CF and asthma meds is now the smallest it's been since he > was first diagnosed at age 4. Life is good and I feel blessed. > > Again, thanks for being kind. Based on past experience, lately I've > dreaded logging on to read CF Parents mail fearing where this topic > might go. > > Kim > Mom of (24 with cf and asthma) and (20 1/2 asthma no cf) > > --- findacureforcf@a... wrote: > Hi all, I was wondering if some of you could email me off list about > the certain methods you all are using to improve your child's lives. I > am going to clinic soon and I want to address these methods to > 's doctors. Especially about the Hawthorne, it sounds like it > really improves digestion. How does one know what to look for when > looking at herbs and such? I really want to have all the > options available to him. I would really appreciate all your feedback. > I have been watching the post and I am quite intrigued that these > methods aren't brought up by the doctors themselves, but by parents. > I would have figured the doctors would look into improving our > children's lives by more means than just medicine, look through all > outlets. I am very happy to be a part of this group, so much wide > variety of knowledge. Thanks to all who respond.... mommy of > 5 years old cf and adhd and > no cf. > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 The website you are asking about???? is it the one listed in the post , 2 posts back on this one. I am not sure which you are asking about . the last one from Kim to ME is on another question Kim had for Lois. at our office. She is a pharmacist & very much into Holistic meds /natural supplements too........Maybe Kim can give you another site. I think one is www.Craetactus.com spelling?? LOVE & HUGS, GRDMBEV Re: Re: holistic methods I don't know how to get to the archives. Is there a website for this e-mail group too??? Can anyone tell me how to get to it.....Thanks~ Re: holistic methods > > > Hi , > > I want to thank you for such a nice post. Those of us using > " alternative " treatments never really know how other people will > understand what we're trying to say. > > Getting a CF diagnosis (or any chronic illness diagnosis) is scary so > naturally, at first we jump for any life preservor to help us hang > on. That means putting lots of faith and trust in our CF doctors. > > Sadly, we know too well that CF care in the US isn't standardized. And > there are many doctors that don't seem to understand what we go > through, nor do they seem to realize that often many of the > " traditional " meds they prescribe harm in the long run or lead to > other problems. > > I applaud you for wanting to take information to your doctor. But I > just want you to be prepared and not be discourage in case your doctor > isn't open to listening. It all boils down to HOW your doctor was > trained AND the doctor's personal philosophy about medicine. > > If the doctor didn't have an early relationship, interest, or > experience with alternative meds and treatments then likely s/he won't > know anything about herbs and essential oils, etc. And the s/he may > not be interested in learning. It's easier for some people to stick to > one path -- traditional medicine. Learning anything new takes time and > effort. Practicing and keeping up with traditional medicine may be the > only thing your doctor's interest and time schedule allows right now. > > Many people, including doctors, seem to think alternative meds and > treatments is a new area -- sort of like hocus pocus magic -- so it's > not worthy of considering. > > And that's so untrue. If you look at the history of medicine, herbs > and oils came first. It was the standard practice of our forefathers > and is the foundation of traditional medicine, not the reverse. > > But in the US, now we have big organizations like the AMA and > insurance companies dictating " standard care. " And they are loathe to > give up their stance. > > However, this is slowly changing. Some insurance companies now cover > treatments such as biofeedback and acupuncture, which are labeled > " alternative " or " complementary " medicine (sure wish they'd cover > vitamins, minerals and herbs!). > > Even the NIH set up an office -- the National Center for Complementary > and Alternative Medicine because they recognized so many Americans are > going this route. You can view the site at http://nccam.nih.gov/ > > So again, I just really want to thank you for being so kind, > understanding and nonjudgmental in your post. Sometimes I get > very hurtful private emails from people on this list and Cystic-L and > whenever I've posted suggested that magnesium, taurine or essential > oils might help. Their point always seems to be, " Well, if this is so > important then why doesn't MY doctor know about it? " > > It's only because the doctor hasn't yet learned or doesn't want to > learn... Doctors are just like the rest of us; we never stop learning. > > For years my son was only on " traditional " CF and asthma meds along > with a good quality multivitamin/mineral and extra A, C, and E. But > eventually his health was declining after he started college. > > I always held my son's doctor in the highest regard; we always worked > as a team on his care, discussing everything. When I went to him in > 1999 and told him I wanted to start oral GSH and Zithromax, he was > open-minded as usual. I know I was lucky because some doctors freak > out if they hear you want to try something they know nothing about. > > The one complaint I always held against this doctor was that he seemed > to always compare my son to his other patients. Time and again the > staff always commented how much healthier my son was than their other > patients. So when my son started declining after he went to college, I > think the doctor just shrugged this off as aging and the sad, normal > progression of CF. He failed to compare my son against himself, > instead comparing him to his other patients. > > So I faced two options: accept the doctor's stance on the CF > progression and let my son progress downward, or turn it around. Since > I saw this was all related to college and diet I knew we could turn it > around. > > The people on the Crataegus list can confirm his miraculous recovery > after we started adding certain things. And the list of his > traditional CF and asthma meds is now the smallest it's been since he > was first diagnosed at age 4. Life is good and I feel blessed. > > Again, thanks for being kind. Based on past experience, lately I've > dreaded logging on to read CF Parents mail fearing where this topic > might go. > > Kim > Mom of (24 with cf and asthma) and (20 1/2 asthma no cf) > > --- findacureforcf@a... wrote: > Hi all, I was wondering if some of you could email me off list about > the certain methods you all are using to improve your child's lives. I > am going to clinic soon and I want to address these methods to > 's doctors. Especially about the Hawthorne, it sounds like it > really improves digestion. How does one know what to look for when > looking at herbs and such? I really want to have all the > options available to him. I would really appreciate all your feedback. > I have been watching the post and I am quite intrigued that these > methods aren't brought up by the doctors themselves, but by parents. > I would have figured the doctors would look into improving our > children's lives by more means than just medicine, look through all > outlets. I am very happy to be a part of this group, so much wide > variety of knowledge. Thanks to all who respond.... mommy of > 5 years old cf and adhd and > no cf. > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 go to http://groups.yahoo.com/group/cfparents Re: holistic methods > > > Hi , > > I want to thank you for such a nice post. Those of us using > " alternative " treatments never really know how other people will > understand what we're trying to say. > > Getting a CF diagnosis (or any chronic illness diagnosis) is scary so > naturally, at first we jump for any life preservor to help us hang > on. That means putting lots of faith and trust in our CF doctors. > > Sadly, we know too well that CF care in the US isn't standardized. And > there are many doctors that don't seem to understand what we go > through, nor do they seem to realize that often many of the > " traditional " meds they prescribe harm in the long run or lead to > other problems. > > I applaud you for wanting to take information to your doctor. But I > just want you to be prepared and not be discourage in case your doctor > isn't open to listening. It all boils down to HOW your doctor was > trained AND the doctor's personal philosophy about medicine. > > If the doctor didn't have an early relationship, interest, or > experience with alternative meds and treatments then likely s/he won't > know anything about herbs and essential oils, etc. And the s/he may > not be interested in learning. It's easier for some people to stick to > one path -- traditional medicine. Learning anything new takes time and > effort. Practicing and keeping up with traditional medicine may be the > only thing your doctor's interest and time schedule allows right now. > > Many people, including doctors, seem to think alternative meds and > treatments is a new area -- sort of like hocus pocus magic -- so it's > not worthy of considering. > > And that's so untrue. If you look at the history of medicine, herbs > and oils came first. It was the standard practice of our forefathers > and is the foundation of traditional medicine, not the reverse. > > But in the US, now we have big organizations like the AMA and > insurance companies dictating " standard care. " And they are loathe to > give up their stance. > > However, this is slowly changing. Some insurance companies now cover > treatments such as biofeedback and acupuncture, which are labeled > " alternative " or " complementary " medicine (sure wish they'd cover > vitamins, minerals and herbs!). > > Even the NIH set up an office -- the National Center for Complementary > and Alternative Medicine because they recognized so many Americans are > going this route. You can view the site at http://nccam.nih.gov/ > > So again, I just really want to thank you for being so kind, > understanding and nonjudgmental in your post. Sometimes I get > very hurtful private emails from people on this list and Cystic-L and > whenever I've posted suggested that magnesium, taurine or essential > oils might help. Their point always seems to be, " Well, if this is so > important then why doesn't MY doctor know about it? " > > It's only because the doctor hasn't yet learned or doesn't want to > learn... Doctors are just like the rest of us; we never stop learning. > > For years my son was only on " traditional " CF and asthma meds along > with a good quality multivitamin/mineral and extra A, C, and E. But > eventually his health was declining after he started college. > > I always held my son's doctor in the highest regard; we always worked > as a team on his care, discussing everything. When I went to him in > 1999 and told him I wanted to start oral GSH and Zithromax, he was > open-minded as usual. I know I was lucky because some doctors freak > out if they hear you want to try something they know nothing about. > > The one complaint I always held against this doctor was that he seemed > to always compare my son to his other patients. Time and again the > staff always commented how much healthier my son was than their other > patients. So when my son started declining after he went to college, I > think the doctor just shrugged this off as aging and the sad, normal > progression of CF. He failed to compare my son against himself, > instead comparing him to his other patients. > > So I faced two options: accept the doctor's stance on the CF > progression and let my son progress downward, or turn it around. Since > I saw this was all related to college and diet I knew we could turn it > around. > > The people on the Crataegus list can confirm his miraculous recovery > after we started adding certain things. And the list of his > traditional CF and asthma meds is now the smallest it's been since he > was first diagnosed at age 4. Life is good and I feel blessed. > > Again, thanks for being kind. Based on past experience, lately I've > dreaded logging on to read CF Parents mail fearing where this topic > might go. > > Kim > Mom of (24 with cf and asthma) and (20 1/2 asthma no cf) > > --- findacureforcf@a... wrote: > Hi all, I was wondering if some of you could email me off list about > the certain methods you all are using to improve your child's lives. I > am going to clinic soon and I want to address these methods to > 's doctors. Especially about the Hawthorne, it sounds like it > really improves digestion. How does one know what to look for when > looking at herbs and such? I really want to have all the > options available to him. I would really appreciate all your feedback. > I have been watching the post and I am quite intrigued that these > methods aren't brought up by the doctors themselves, but by parents. > I would have figured the doctors would look into improving our > children's lives by more means than just medicine, look through all > outlets. I am very happy to be a part of this group, so much wide > variety of knowledge. Thanks to all who respond.... mommy of > 5 years old cf and adhd and > no cf. > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
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