Guest guest Report post Posted May 28, 2000 Kim, If your doctor still doesn't approve of the surgery for you. I would ask your OB/GYN if he can recommend a doctor for you. I asked my OB/GYN if he would be the doctor that would follow me and he said he doesn't do that kind of stuff but he did find a doctor that would support me for the surgery. The best part about it is I didn't have to go for one doctor to another until I found one because of my OB/GYN finding me one. So talk to you OB/GYN about it and see if he/she can recommend one for you.....GOOD LUCK Joyce Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 28, 2000 Kim, If your doctor still doesn't approve of the surgery for you. I would ask your OB/GYN if he can recommend a doctor for you. I asked my OB/GYN if he would be the doctor that would follow me and he said he doesn't do that kind of stuff but he did find a doctor that would support me for the surgery. The best part about it is I didn't have to go for one doctor to another until I found one because of my OB/GYN finding me one. So talk to you OB/GYN about it and see if he/she can recommend one for you.....GOOD LUCK Joyce Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 28, 2000 Kim, If your doctor still doesn't approve of the surgery for you. I would ask your OB/GYN if he can recommend a doctor for you. I asked my OB/GYN if he would be the doctor that would follow me and he said he doesn't do that kind of stuff but he did find a doctor that would support me for the surgery. The best part about it is I didn't have to go for one doctor to another until I found one because of my OB/GYN finding me one. So talk to you OB/GYN about it and see if he/she can recommend one for you.....GOOD LUCK Joyce Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 11, 2000 Kim, HI, I was wondering if you have been to clinic yet or if you have a date?? Let me know, you can pick me up on your way LOL Margie SC Still praying for Theresa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 11, 2000 Kim, HI, I was wondering if you have been to clinic yet or if you have a date?? Let me know, you can pick me up on your way LOL Margie SC Still praying for Theresa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 11, 2000 Kim, HI, I was wondering if you have been to clinic yet or if you have a date?? Let me know, you can pick me up on your way LOL Margie SC Still praying for Theresa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 16, 2002 Seems to be a corrolation between mono and fibro. The immune system is compromised and sets up the body for toxin retension in muscles. Then when there is no sleep, this exascerabates the problems. We understand , we have similar problesm. We're here, ask away or just talk. Star --- ksruscher txswtthang@...> wrote: > Hi, My name is Kim. I am 38 years old and have 2 > children. I have > been diagnosed with CFS and Fibro for 8 years now. > I have tested > positive for RA, but the doctor told me that if it > was RA I would be > crippled by now. I have had several other doctors > tell me that it > was Fibro also. I have alot of pain and do not > sleep well at night. > I also have had a disc removed in my lower back. I > am exhausted > through the day and feel like I am lugging heavy > bricks around. I > am 5'10 " and weigh 300 pounds. I want to do so many > things, but " My > get up and go, went a LONG time ago! " . I was > diagnosed with > Mononucleosis approx. 15 years ago. Can anyone tell > me what the tie > between Mono and Fibro is? Just trying to do some > research to see > if there is anyway I can fight this. Hope to hear > from you!! > > Thanks for letting me share my story. > > ===== __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 16, 2002 Seems to be a corrolation between mono and fibro. The immune system is compromised and sets up the body for toxin retension in muscles. Then when there is no sleep, this exascerabates the problems. We understand , we have similar problesm. We're here, ask away or just talk. Star --- ksruscher txswtthang@...> wrote: > Hi, My name is Kim. I am 38 years old and have 2 > children. I have > been diagnosed with CFS and Fibro for 8 years now. > I have tested > positive for RA, but the doctor told me that if it > was RA I would be > crippled by now. I have had several other doctors > tell me that it > was Fibro also. I have alot of pain and do not > sleep well at night. > I also have had a disc removed in my lower back. I > am exhausted > through the day and feel like I am lugging heavy > bricks around. I > am 5'10 " and weigh 300 pounds. I want to do so many > things, but " My > get up and go, went a LONG time ago! " . I was > diagnosed with > Mononucleosis approx. 15 years ago. Can anyone tell > me what the tie > between Mono and Fibro is? Just trying to do some > research to see > if there is anyway I can fight this. Hope to hear > from you!! > > Thanks for letting me share my story. > > ===== __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 16, 2002 Seems to be a corrolation between mono and fibro. The immune system is compromised and sets up the body for toxin retension in muscles. Then when there is no sleep, this exascerabates the problems. We understand , we have similar problesm. We're here, ask away or just talk. Star --- ksruscher txswtthang@...> wrote: > Hi, My name is Kim. I am 38 years old and have 2 > children. I have > been diagnosed with CFS and Fibro for 8 years now. > I have tested > positive for RA, but the doctor told me that if it > was RA I would be > crippled by now. I have had several other doctors > tell me that it > was Fibro also. I have alot of pain and do not > sleep well at night. > I also have had a disc removed in my lower back. I > am exhausted > through the day and feel like I am lugging heavy > bricks around. I > am 5'10 " and weigh 300 pounds. I want to do so many > things, but " My > get up and go, went a LONG time ago! " . I was > diagnosed with > Mononucleosis approx. 15 years ago. Can anyone tell > me what the tie > between Mono and Fibro is? Just trying to do some > research to see > if there is anyway I can fight this. Hope to hear > from you!! > > Thanks for letting me share my story. > > ===== __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 17, 2002 Hi Kim…. Your doctor telling you that if you had RA you would be crippled by now is the most hideous piece of medican advice I have ever heard… Both my husband and I have sero negative RA and fibro…our sero negative RA is currently going into remission because of treatment You hear all kinds of stories of people getting their lives back through the new biologics and the fact your doctor is not treating you for the RA is simply leaving your bones to further advance to a degree they don’t need to advance to, I would see a referral to a rheumatologist assuming you don’t have one and get put on a DMARD, which is a disease modifying agent to stop the destruction.. I am sorry but that is horrible if you have tested positive for RA and not been treated.. There is a site I will give you the link to that suggests the connection between infection and other chronic disease..such as chronic fatigue syndrome and fibro and RA. http://www.ra-infection-connection.com/ The author’s email address is listed there and she replies to all emails…The reason I suggest browsing the web page is that after so much research that my husband and I did and trying to find a doctor who would treat us with the protocol was no easy task, but we did it and we are both in remission at this point in time..the joint destruction is being held at bay….and we have a big part of our lives back.. The book is for the intelligent reader and suggests the infection connection to these chronic diseases.. Please if you have a positive RA seek treatment before he allows you to become disabled via ommisiom With fibro the main criteria to being well is sleeping…we are given imovane to sleep ..it is a non benzodiazepame type drug and guarantees us 7 hours of sleep no matter the pain…and if necessary we will be given a certain type of anti depressant (amitriptiline) to enhance the feelings of the medication to help you sleep….which is so necessary I strongly urge a positive RA test be treated by what method of DMARD your family and rheumatologist suggest. Please consider what he is allowing to be done to your body without dealing with the disease.. RA and fibro are grouped under arthritic conditions and can co mingle as the same disease or two diseases with parallel symptoms… Your pain will dissipate over time if treatment is begun…the philosophy is now that you treat a positive RA with aggressive treatments and people are getting their lives back in many cases. Please consider not accepting your doctor’s most inappropriate determinations…I think we all have this preconceived notion that if you have RA you are wheelchair bound..the lady that wrote that book also suffered from RA and now she does everything as she is in remission Her book is well documented and speaks of the viral, bacterial, or fungal infection that leads to fibro, chronic fatigue and ra and other rheumatic diseases. Her protocol she followed was set up by a dr brown www.roadback.org http://www.roadback.org/> who died in the late 80’s at a very old age, but helped over 10,000 people get well again on the road back..he was also medical counsel to the white house … Please get your doctor to attend to your positive RA result so you can gain some of your life back and get something for sleep so you may heal over night Hugs and I hope in some way I have helped…and that my opinions are but my opinions and I am not trying to force a determination upon you..just give you some hope to get away from your pain with treatment Sincerely Re: Kim Seems to be a corrolation between mono and fibro. The immune system is compromised and sets up the body for toxin retension in muscles. Then when there is no sleep, this exascerabates the problems. We understand , we have similar problesm. We're here, ask away or just talk. Star --- ksruscher txswtthang@...> wrote: > Hi, My name is Kim. I am 38 years old and have 2 > children. I have > been diagnosed with CFS and Fibro for 8 years now. > I have tested > positive for RA, but the doctor told me that if it > was RA I would be > crippled by now. I have had several other doctors > tell me that it > was Fibro also. I have alot of pain and do not > sleep well at night. > I also have had a disc removed in my lower back. I > am exhausted > through the day and feel like I am lugging heavy > bricks around. I > am 5'10 " and weigh 300 pounds. I want to do so many > things, but " My > get up and go, went a LONG time ago! " . I was > diagnosed with > Mononucleosis approx. 15 years ago. Can anyone tell > me what the tie > between Mono and Fibro is? Just trying to do some > research to see > if there is anyway I can fight this. Hope to hear > from you!! > > Thanks for letting me share my story. > > ===== __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 17, 2002 Hi Kim…. Your doctor telling you that if you had RA you would be crippled by now is the most hideous piece of medican advice I have ever heard… Both my husband and I have sero negative RA and fibro…our sero negative RA is currently going into remission because of treatment You hear all kinds of stories of people getting their lives back through the new biologics and the fact your doctor is not treating you for the RA is simply leaving your bones to further advance to a degree they don’t need to advance to, I would see a referral to a rheumatologist assuming you don’t have one and get put on a DMARD, which is a disease modifying agent to stop the destruction.. I am sorry but that is horrible if you have tested positive for RA and not been treated.. There is a site I will give you the link to that suggests the connection between infection and other chronic disease..such as chronic fatigue syndrome and fibro and RA. http://www.ra-infection-connection.com/ The author’s email address is listed there and she replies to all emails…The reason I suggest browsing the web page is that after so much research that my husband and I did and trying to find a doctor who would treat us with the protocol was no easy task, but we did it and we are both in remission at this point in time..the joint destruction is being held at bay….and we have a big part of our lives back.. The book is for the intelligent reader and suggests the infection connection to these chronic diseases.. Please if you have a positive RA seek treatment before he allows you to become disabled via ommisiom With fibro the main criteria to being well is sleeping…we are given imovane to sleep ..it is a non benzodiazepame type drug and guarantees us 7 hours of sleep no matter the pain…and if necessary we will be given a certain type of anti depressant (amitriptiline) to enhance the feelings of the medication to help you sleep….which is so necessary I strongly urge a positive RA test be treated by what method of DMARD your family and rheumatologist suggest. Please consider what he is allowing to be done to your body without dealing with the disease.. RA and fibro are grouped under arthritic conditions and can co mingle as the same disease or two diseases with parallel symptoms… Your pain will dissipate over time if treatment is begun…the philosophy is now that you treat a positive RA with aggressive treatments and people are getting their lives back in many cases. Please consider not accepting your doctor’s most inappropriate determinations…I think we all have this preconceived notion that if you have RA you are wheelchair bound..the lady that wrote that book also suffered from RA and now she does everything as she is in remission Her book is well documented and speaks of the viral, bacterial, or fungal infection that leads to fibro, chronic fatigue and ra and other rheumatic diseases. Her protocol she followed was set up by a dr brown www.roadback.org http://www.roadback.org/> who died in the late 80’s at a very old age, but helped over 10,000 people get well again on the road back..he was also medical counsel to the white house … Please get your doctor to attend to your positive RA result so you can gain some of your life back and get something for sleep so you may heal over night Hugs and I hope in some way I have helped…and that my opinions are but my opinions and I am not trying to force a determination upon you..just give you some hope to get away from your pain with treatment Sincerely Re: Kim Seems to be a corrolation between mono and fibro. The immune system is compromised and sets up the body for toxin retension in muscles. Then when there is no sleep, this exascerabates the problems. We understand , we have similar problesm. We're here, ask away or just talk. Star --- ksruscher txswtthang@...> wrote: > Hi, My name is Kim. I am 38 years old and have 2 > children. I have > been diagnosed with CFS and Fibro for 8 years now. > I have tested > positive for RA, but the doctor told me that if it > was RA I would be > crippled by now. I have had several other doctors > tell me that it > was Fibro also. I have alot of pain and do not > sleep well at night. > I also have had a disc removed in my lower back. I > am exhausted > through the day and feel like I am lugging heavy > bricks around. I > am 5'10 " and weigh 300 pounds. I want to do so many > things, but " My > get up and go, went a LONG time ago! " . I was > diagnosed with > Mononucleosis approx. 15 years ago. Can anyone tell > me what the tie > between Mono and Fibro is? Just trying to do some > research to see > if there is anyway I can fight this. Hope to hear > from you!! > > Thanks for letting me share my story. > > ===== __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 17, 2002 Hi Kim…. Your doctor telling you that if you had RA you would be crippled by now is the most hideous piece of medican advice I have ever heard… Both my husband and I have sero negative RA and fibro…our sero negative RA is currently going into remission because of treatment You hear all kinds of stories of people getting their lives back through the new biologics and the fact your doctor is not treating you for the RA is simply leaving your bones to further advance to a degree they don’t need to advance to, I would see a referral to a rheumatologist assuming you don’t have one and get put on a DMARD, which is a disease modifying agent to stop the destruction.. I am sorry but that is horrible if you have tested positive for RA and not been treated.. There is a site I will give you the link to that suggests the connection between infection and other chronic disease..such as chronic fatigue syndrome and fibro and RA. http://www.ra-infection-connection.com/ The author’s email address is listed there and she replies to all emails…The reason I suggest browsing the web page is that after so much research that my husband and I did and trying to find a doctor who would treat us with the protocol was no easy task, but we did it and we are both in remission at this point in time..the joint destruction is being held at bay….and we have a big part of our lives back.. The book is for the intelligent reader and suggests the infection connection to these chronic diseases.. Please if you have a positive RA seek treatment before he allows you to become disabled via ommisiom With fibro the main criteria to being well is sleeping…we are given imovane to sleep ..it is a non benzodiazepame type drug and guarantees us 7 hours of sleep no matter the pain…and if necessary we will be given a certain type of anti depressant (amitriptiline) to enhance the feelings of the medication to help you sleep….which is so necessary I strongly urge a positive RA test be treated by what method of DMARD your family and rheumatologist suggest. Please consider what he is allowing to be done to your body without dealing with the disease.. RA and fibro are grouped under arthritic conditions and can co mingle as the same disease or two diseases with parallel symptoms… Your pain will dissipate over time if treatment is begun…the philosophy is now that you treat a positive RA with aggressive treatments and people are getting their lives back in many cases. Please consider not accepting your doctor’s most inappropriate determinations…I think we all have this preconceived notion that if you have RA you are wheelchair bound..the lady that wrote that book also suffered from RA and now she does everything as she is in remission Her book is well documented and speaks of the viral, bacterial, or fungal infection that leads to fibro, chronic fatigue and ra and other rheumatic diseases. Her protocol she followed was set up by a dr brown www.roadback.org http://www.roadback.org/> who died in the late 80’s at a very old age, but helped over 10,000 people get well again on the road back..he was also medical counsel to the white house … Please get your doctor to attend to your positive RA result so you can gain some of your life back and get something for sleep so you may heal over night Hugs and I hope in some way I have helped…and that my opinions are but my opinions and I am not trying to force a determination upon you..just give you some hope to get away from your pain with treatment Sincerely Re: Kim Seems to be a corrolation between mono and fibro. The immune system is compromised and sets up the body for toxin retension in muscles. Then when there is no sleep, this exascerabates the problems. We understand , we have similar problesm. We're here, ask away or just talk. Star --- ksruscher txswtthang@...> wrote: > Hi, My name is Kim. I am 38 years old and have 2 > children. I have > been diagnosed with CFS and Fibro for 8 years now. > I have tested > positive for RA, but the doctor told me that if it > was RA I would be > crippled by now. I have had several other doctors > tell me that it > was Fibro also. I have alot of pain and do not > sleep well at night. > I also have had a disc removed in my lower back. I > am exhausted > through the day and feel like I am lugging heavy > bricks around. I > am 5'10 " and weigh 300 pounds. I want to do so many > things, but " My > get up and go, went a LONG time ago! " . I was > diagnosed with > Mononucleosis approx. 15 years ago. Can anyone tell > me what the tie > between Mono and Fibro is? Just trying to do some > research to see > if there is anyway I can fight this. Hope to hear > from you!! > > Thanks for letting me share my story. > > ===== __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 8, 2002 Hi , Yes, certainly you may email me privately. Gosh, I hope by my post you wouldn't think I'm unapproachable. I hope I can answer your questions. By the way, I love the names of your children! Kim > Kim, > >I have a few questions about the nutrients you described for your son. Could I e-mail you privately and ask a few questions? I don't know anything about Nanotech and probably cant get it in Australia anyway, but I'm very interested in talking with you. > >Thanks > (Australia) >Liam 8 wocf & Eilish 5 wcf Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 8, 2002 Hi , Yes, certainly you may email me privately. Gosh, I hope by my post you wouldn't think I'm unapproachable. I hope I can answer your questions. By the way, I love the names of your children! Kim > Kim, > >I have a few questions about the nutrients you described for your son. Could I e-mail you privately and ask a few questions? I don't know anything about Nanotech and probably cant get it in Australia anyway, but I'm very interested in talking with you. > >Thanks > (Australia) >Liam 8 wocf & Eilish 5 wcf Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 8, 2002 Hi , Yes, certainly you may email me privately. Gosh, I hope by my post you wouldn't think I'm unapproachable. I hope I can answer your questions. By the way, I love the names of your children! Kim > Kim, > >I have a few questions about the nutrients you described for your son. Could I e-mail you privately and ask a few questions? I don't know anything about Nanotech and probably cant get it in Australia anyway, but I'm very interested in talking with you. > >Thanks > (Australia) >Liam 8 wocf & Eilish 5 wcf Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 18, 2002 , You're welcome and I'm envious you have this available. Lucky you! If I bought bottled water it would be very expensive and probably still not match the magnesium content of yours. The measurement term might be " parts per million " (ppm). In the US, that's how they measure both good and bad things in the water. I just thought of this so I'm thinking out loud... almost all antibiotics (there are few exceptions) are incompatiable with magnesium; they compete to bind to the same receptor site. That's why you shouldn't take multivitamin/mineral supplements or magnesium (and some calcium) supplements along with oral antibiotics. Since so many people with CF are now taking Zithromax daily or on the three-days a week protocol, they must be careful to space magnesium at least two - four hours apart from the antibiotic. But now I'm very curious about taking antibiotics with water rich in natural minerals. There are huge differences in water content around the world, so I wonder if anyone has studied this? My guess is since we're talking about magnesium in ppm in water the effect on the antibiotics is small to none. But I think I'm going to do some scouting around to see what the magnesium experts say! Kim Kim, I took your advice and have order a different bottled water. One with a higher Magnesium level. Our old one was 44....(not sure of the measurement term) and this new one is 154. Thanks for the advise. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 18, 2002 , You're welcome and I'm envious you have this available. Lucky you! If I bought bottled water it would be very expensive and probably still not match the magnesium content of yours. The measurement term might be " parts per million " (ppm). In the US, that's how they measure both good and bad things in the water. I just thought of this so I'm thinking out loud... almost all antibiotics (there are few exceptions) are incompatiable with magnesium; they compete to bind to the same receptor site. That's why you shouldn't take multivitamin/mineral supplements or magnesium (and some calcium) supplements along with oral antibiotics. Since so many people with CF are now taking Zithromax daily or on the three-days a week protocol, they must be careful to space magnesium at least two - four hours apart from the antibiotic. But now I'm very curious about taking antibiotics with water rich in natural minerals. There are huge differences in water content around the world, so I wonder if anyone has studied this? My guess is since we're talking about magnesium in ppm in water the effect on the antibiotics is small to none. But I think I'm going to do some scouting around to see what the magnesium experts say! Kim Kim, I took your advice and have order a different bottled water. One with a higher Magnesium level. Our old one was 44....(not sure of the measurement term) and this new one is 154. Thanks for the advise. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 19, 2002 Kim, It's not that expensive here. It's $4.80 for 11 litres. And it's delivered to your door. Re: KIM , You're welcome and I'm envious you have this available. Lucky you! If I bought bottled water it would be very expensive and probably still not match the magnesium content of yours. The measurement term might be " parts per million " (ppm). In the US, that's how they measure both good and bad things in the water. I just thought of this so I'm thinking out loud... almost all antibiotics (there are few exceptions) are incompatiable with magnesium; they compete to bind to the same receptor site. That's why you shouldn't take multivitamin/mineral supplements or magnesium (and some calcium) supplements along with oral antibiotics. Since so many people with CF are now taking Zithromax daily or on the three-days a week protocol, they must be careful to space magnesium at least two - four hours apart from the antibiotic. But now I'm very curious about taking antibiotics with water rich in natural minerals. There are huge differences in water content around the world, so I wonder if anyone has studied this? My guess is since we're talking about magnesium in ppm in water the effect on the antibiotics is small to none. But I think I'm going to do some scouting around to see what the magnesium experts say! Kim Kim, I took your advice and have order a different bottled water. One with a higher Magnesium level. Our old one was 44....(not sure of the measurement term) and this new one is 154. Thanks for the advise. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 19, 2002 Kim, It's not that expensive here. It's $4.80 for 11 litres. And it's delivered to your door. Re: KIM , You're welcome and I'm envious you have this available. Lucky you! If I bought bottled water it would be very expensive and probably still not match the magnesium content of yours. The measurement term might be " parts per million " (ppm). In the US, that's how they measure both good and bad things in the water. I just thought of this so I'm thinking out loud... almost all antibiotics (there are few exceptions) are incompatiable with magnesium; they compete to bind to the same receptor site. That's why you shouldn't take multivitamin/mineral supplements or magnesium (and some calcium) supplements along with oral antibiotics. Since so many people with CF are now taking Zithromax daily or on the three-days a week protocol, they must be careful to space magnesium at least two - four hours apart from the antibiotic. But now I'm very curious about taking antibiotics with water rich in natural minerals. There are huge differences in water content around the world, so I wonder if anyone has studied this? My guess is since we're talking about magnesium in ppm in water the effect on the antibiotics is small to none. But I think I'm going to do some scouting around to see what the magnesium experts say! Kim Kim, I took your advice and have order a different bottled water. One with a higher Magnesium level. Our old one was 44....(not sure of the measurement term) and this new one is 154. Thanks for the advise. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 23, 2002 Thanks Kim and all the others for the explanations!! I have found a water soluble A as well and I will give that to Liam just to make sure he dosent get low on it because he is in the lower part of the normal for A Re: Vitamin Levels LIAM Hi , Vitamins A, D, E, and K are all fat soluble vitamins. This *fat soluble* tells you that these are stored in your body fat (i.e., they *need* fat in order to be soluble in the body). This is why people with cf need A, D, E, and K in water soluble forms. If people with cf don't absorb fat well then they don't have adequate fat storage and these particular vitamins have no where to go. In people who don't have malabsorption problems (and before the Western diet got so bad), the USDA recommended eating vegetables rich in vitamin A every other day, since it's stored in the fat it builds up in the body. (But now that Western diets are mostly junk and processed foods and our soils are depleted of minerals, I wouldn't hold to that old standard.) All other vitamins aren't stored in body fat, which is why they need to be replaced daily. Vitamin C especially is a good example; it's shed from the body each time you urinate, so if you have a cold or flu or under stress, it's a helpful habit to remember to take more Vitamin C each time you urinate. To answer your other question, eating carrots or drinking carrot juice (or other vitamin A rich foods such as pumpkin, sweet potato and acorn squash) replenishes the body with vitamin A, which gets stored in your body fat. It has nothing to do with the foods containing fat or not. I hope this makes sense; I haven't had a full cup of coffee yet! Kim Mom to (23 with cf and asthma) and (20 asthma no cf) > Hi all > Got Liams vitamin levels back > A is Fine > E is below normal > D is Below normal > > He is going to get supplemented on Micell E to correct the E imbalance and we will put him in the sun more for the D > Hopefully this will work > Has anyone got some more suggestions he is only 3 months old and still fully breastfeed > > I do have aquestion though: If vitamin A is a fat soluble vitamin then when giving carrot juice or eating a carrort is this turned into a fat soluble substance in the body?? Or is this betacarotene in the carrot water soluble and the vit A is still fat soluble, so confused about that. There is no fat in a carrot????? HELPPP > thanks for your time > mum to baby Liam > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 23, 2002 Thanks Kim and all the others for the explanations!! I have found a water soluble A as well and I will give that to Liam just to make sure he dosent get low on it because he is in the lower part of the normal for A Re: Vitamin Levels LIAM Hi , Vitamins A, D, E, and K are all fat soluble vitamins. This *fat soluble* tells you that these are stored in your body fat (i.e., they *need* fat in order to be soluble in the body). This is why people with cf need A, D, E, and K in water soluble forms. If people with cf don't absorb fat well then they don't have adequate fat storage and these particular vitamins have no where to go. In people who don't have malabsorption problems (and before the Western diet got so bad), the USDA recommended eating vegetables rich in vitamin A every other day, since it's stored in the fat it builds up in the body. (But now that Western diets are mostly junk and processed foods and our soils are depleted of minerals, I wouldn't hold to that old standard.) All other vitamins aren't stored in body fat, which is why they need to be replaced daily. Vitamin C especially is a good example; it's shed from the body each time you urinate, so if you have a cold or flu or under stress, it's a helpful habit to remember to take more Vitamin C each time you urinate. To answer your other question, eating carrots or drinking carrot juice (or other vitamin A rich foods such as pumpkin, sweet potato and acorn squash) replenishes the body with vitamin A, which gets stored in your body fat. It has nothing to do with the foods containing fat or not. I hope this makes sense; I haven't had a full cup of coffee yet! Kim Mom to (23 with cf and asthma) and (20 asthma no cf) > Hi all > Got Liams vitamin levels back > A is Fine > E is below normal > D is Below normal > > He is going to get supplemented on Micell E to correct the E imbalance and we will put him in the sun more for the D > Hopefully this will work > Has anyone got some more suggestions he is only 3 months old and still fully breastfeed > > I do have aquestion though: If vitamin A is a fat soluble vitamin then when giving carrot juice or eating a carrort is this turned into a fat soluble substance in the body?? Or is this betacarotene in the carrot water soluble and the vit A is still fat soluble, so confused about that. There is no fat in a carrot????? HELPPP > thanks for your time > mum to baby Liam > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 23, 2002 Kim Hello Kim, I really appreciate you taking the time to relay all of that information. I really didn't know a lot about Zithromax. I've just heard a lot of people on Cystic-L saying how much it has helped. At this point, I'm willing to try anything. Please send me any information that you have that will help me be better informed about the choices we have. I've already saved this e-mail in my computer and printed a back up " just in case " . At this point Josh's lungs are in fairly good shape. I want all the information that I can get that will help us keep them that way. You can send the papers that you wrote to ddecell@.... I am very interested in both your experiences and those of anyone else. I want to be well informed when I speak to the doctor. Thanks again, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 23, 2002 Kim Hello Kim, I really appreciate you taking the time to relay all of that information. I really didn't know a lot about Zithromax. I've just heard a lot of people on Cystic-L saying how much it has helped. At this point, I'm willing to try anything. Please send me any information that you have that will help me be better informed about the choices we have. I've already saved this e-mail in my computer and printed a back up " just in case " . At this point Josh's lungs are in fairly good shape. I want all the information that I can get that will help us keep them that way. You can send the papers that you wrote to ddecell@.... I am very interested in both your experiences and those of anyone else. I want to be well informed when I speak to the doctor. Thanks again, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 23, 2002 Kim Hello Kim, I really appreciate you taking the time to relay all of that information. I really didn't know a lot about Zithromax. I've just heard a lot of people on Cystic-L saying how much it has helped. At this point, I'm willing to try anything. Please send me any information that you have that will help me be better informed about the choices we have. I've already saved this e-mail in my computer and printed a back up " just in case " . At this point Josh's lungs are in fairly good shape. I want all the information that I can get that will help us keep them that way. You can send the papers that you wrote to ddecell@.... I am very interested in both your experiences and those of anyone else. I want to be well informed when I speak to the doctor. Thanks again, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 30, 2002 Kim, I had to laugh with your ear story. I think maybe when we took her to the hsp. it was the beginning and maybe nothing was noticeable then. She has only complained of a sore ear once today and no fever. I took them to a birthday party today, 2 hours in a video arcade, all games free. I had a ball let alone the kids. I found out I'm no good skiing, motor bike riding or even racing in Daytona, I came last in all of them Lol! (Australia) Re: results Dear , I'm so happy to find an update about Eilish, and I'm glad your doctor found the cause. We've had some screw ups with our emergency room doctors too... but reading Eilish's experience, I'm convinced that some people are very sensitive to what's going on in their bodies even before medical personnel can " see " it -- and also, I wonder if sometimes ear problems just take a while to fully manifest themselves. The summer I was 14-years old, I became very ill: severe left ear pain, dizziness, vomiting, fevers hovering around 99 F (I tried converting that to degrees centigrade for you but failed horribly. My kids and I have a normal temp of 97.6, so when any of us hit 99, we feel awful.) My mom took me to our GP but he couldn't find anything wrong; he said it was probably a virus. Later, she took me to the emergency room; same story, must be a virus. During a two-week time span I saw my GP twice, and went to the ER twice, and I lost over 15 pounds because I couldn't keep anything down. I remember those two weeks, just lying weak as a kitten on the living room rug watching the ceiling spin, crying hot tears that trickled down into my painful ear, and vomiting green bile whenever I ate or moved too quickly. Finally, on my third visit to the GP, he looked in my left ear again and this time said, " Ahhh, hah. " He told my mom there was a cyst growing on my ear drum. He told me to hold still, and he lanced the cyst then gave me a shot of penicillin in the rump; I fainted dead away to the floor. He sent me home with a prescription for more penicillin and I quickly got better. The doctor told my mom that of course they knew now that the cyst had brewing all this time but just wasn't yet big enough for anyone to see. And because my eardrum never looked inflammed no one suspected an infection. I'm wondering if something similar happened to Eilish -- her body was sensitive to the beginning of a middle ear infection, but it just hadn't turned her eardrum pink enough to confirm the diagnosis until she saw her GP. My ears and sinuses are still sensitive creatures. I have to take high doses (1,000 mg.) of guaifenesin starting about 3 days before I fly, and 3 days after flying to prevent sinus and ear infections. One time I'd sat up all night with dizziness, fever, and the feeling my ear drum was bulging down the canal. In the morning I went to my GP's office but he was out, so his associate saw me; that doctor wasn't familiar with my long history or ear problems. He took one look in my ear and I swear he was going to bolt straight for the door. I begged him to lance the ear drum before it ruptured. I figured a straight cut from a lance would heal better than the jagged tear of a rupture, but he wouldn't touch my eardrum. Anyway, I'm happy Eilish is doing better and will be able to enjoy the family Harry Potter outing today! Kim Mom to (23 with asthma and cf) and (20 asthma no cf) Eilish's Gp, who is a lovely guy, said he didn't think she had glandular fever. He check her ears and said she had a bad middle ear infection. The hsp. checked her ears on Tuesday night and said they were fine. HE asked what antibiotics we had at home seeing we always have a stockpile and said to start her on Cipro. but only half the does she takes for PA. Anyway she has been fine today. He said her temps. were due to the infection. IF only the hsp. had said that 3 days ago we could be on the recovery rd. So ive just been to the school pool/fitness complex and bought her ear plugs for swimming. She swims alot so that probably doesnt help her ears but is good for her lungs. She sees the ENT guy Tuesday so UI'll mention to him about all this. Thanks for listening all week. Were now off the see Harry Potter and the Chamber of Secrets. Liam has been reading the novel and frantically had to finish it last night before we went to see the movie today. He tells everyone " I know who opened the chamber of secrets " . We all love H.P and cant wait to see it. Liams going in his HP Robe with glasses and wand and Eilish is wearing a Gryffindor top. (Australia) > > > > Quote Share this post Link to post Share on other sites