Hi Everyone , I need some advise please --- I have a daughter with CF just turning 13 this year , her lung capacity is 63%. Now I have this person trying to seel me a product called "manatech" essential sugar's they say are needed. 300$ a month ! Money does not bother me if I can try to improve her. Has anyone heard of it ? if so does it help or is it just faulse hope. Not that I would stop her med's /pep/ but they are saying these sugars can help her body fix it's self (lol). Thanks for your time , would really appreciate any advise if anyone has heard of this american company ......Cheers 1 with Cf
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Advise please
- Thread starter ozgal2001
- Start date
Hi, for some reason that name sounds familiar ( manatech) but i have no idea what it is. But i figure if there was a "sugar" or a pill, a vitamin, or anything that could make the body "heal itself", i think we'd all be taking it. I did try Glutathione myself after reading all the hype about it, and i found that it does help me a lot. Try to find out as much as you can about this manatech. Do they have a website you could look at? I would also discuss this with her doctor . I asked my doctor about the glutathione before trying it, and my doctor advised me to not inhale it which is what almost everyone else was doing with it. I tried using it orally, and i am glad i did. I hope you find something out about this manatech and whether or not it is something beneficial for your daughter. Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane 39 / cf / diabetes / b.cepacia
Thanks Di for the reply , it is supposed to be glyco-nutrients ? But the company is called manatech. Just another Question for you I cee you carry cepacia ------- My daughter was mrsa positive for 6 year's . She was isolated each admission obviously --- Now she has been cleared for just over two years--- Do you think in some cases MRSA can do damamge to the Lung's because last year she had 8 admissions -- since xmas last year she has had 2 looking to coming up to three just after easter ...... Just seem's all she does is of late is have a continuos cough/ always productive never clears ..... Do you think mrsa could of done damge to her lungs in those 6 years or just part of her genetic make up ! I will be honest she is just hitting 13 and she will not let me discuss cf with anyone , rebelling , she goes to catholic school and hides from others to take her pill's. If her friends stay here she fights with me constantly over and over again to take her med's . dr's know and she is going to OT in hospital. She just cant accept it atm is this normal ?? Thanks Di ----- Hope your well xoxoxo
Hi, I don't know what good Manatech is or exactly what it is supposed to do but I have heard it mentioned on this board before. It was last year sometime though. Sorry, I can't recall much about it. I tried looking it up on a search but it didn't provide enough info. for me. I tend to stick with what the docs have to say about treatment. Glutathione was also another thing discussed on these boards at one time. Just after the story came out on the TODAY SHOW last year. It sounds promising and I know there are some people that either are regulars here or maybe just visitors that have decided to use it. There are studies being conducted on the Glutathione and hopefully it will show to be a benefit for all CF'ers. Sorry I"m not too much help, just wanted to say I had heard of what you are talking about. Liza
Thanks for your reply Liza. I mean let's face it if it is supposed to help with the essential sugar's that are lacking in our body's Roche or other drug companys would be using it . It just annoy's me that some people can thrive on other's emotions and use it to there money making schemes. Take care Liza
I was given a tape about glycol-nutrients about 2 years ago and pretty much though that if it was so good why wouldn't it be widely known. My Doctor hadn't heard of it although he did say that there was so much stuff out there that he wouldn't have heard of. My day went to an information session and said it wasn't very convincing. Type "glycol-nutrients" and "Dr Dan Fouts" into a search engine and you will find some information.Andrew.23, tx, Australia
I just wanted to add that I watched Dateline or one of those shows on a different topic where a diet high in fat would help people w/ seizures (not CF related at all) & a parent asked his Dr, (after trying every medicine out there) if he had heard of this diet & the Dr said Yes, he had.The dad then asked "Why aren't you pushing it, or why didn't you tell us about it?" and the Dr said that this sounds bad, but probably because some big name drug company isn't pushing it with the Dr's or standing behind it. The diet worked for the dad after numerous other Rx combinations didn't!So, in response to your question, that's probably why Dr's aren't pushing it, because they don't have a drug company breathing down their necks pushing them to have their patients using this. I feel the same way w/ the glutathione too.Another reason our CF Dr's may not push these items is that maybe the CFF has not embraced the use of them either until further testing is done? Hope this helped.
In response to your observation about MRSA- my husbnad (32 w/ CF) was diagnosed with MRSA about a year and half ago. Since finding the MRSA his hospital visits have increased . Prior to MRSA he was admitted once every year to 2 years. Last year he was in 4 times and once this year already. At the first the Doc told us MRSA didn't affect you and couldn't make you sick, they are now saying it can make you sick. He has also had to go on oxygen when sleeping and most of the day. This was a huge difference as he was always active and was even able to play roller blade hockey. So we have seen a huge decline in his health since the MRSA popped up. If you don't mind me asking , how as your daughter treated for it ? MC
Hi, In response to your question about MRSA, i dont know much about MRSA at all.i loked i up online last night and from what i read it doesnt sound like it can do lasting damage, but, then again they also said to avoid all foods that contain fat when i was diagnosed, and now we know that was wrong. I woud imagine ANY kind of infection that involves the lungs can possibly do damage. What you are describing about how your daughter feels about her illness is soooo normal. I also used to not want anyone to know about my illness. Infact even to this day i dont tell everyone, just those i know i will have lasting relationship / friendships with. Its a shame your daughter has to be hospitalized a lot, Do you have the option of doing iv treatments at home? It is much better at home, way more comfortable and less chance of getting infected with something else. Keep it in mind and ask her doctor if its a possibility.... Let me know how things go<img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane 39 / cf / diabetes / b.cepacia
Hi,I've been using the Mannatech products for over a year now and I feel they are helping in some way. I still do all my CF treatments and I can't say they have helped with my CF, but they have helped in my overall health. I have much more energy and I feel better. I think they also help my immune system. If I'm starting to get run down, I will increase my Mannatech supplements and I usually bounce back quickly. Hope this helps some. I know some people that got on the MannaRelief program. It's supposed to provide supplements to children if they can't afford the cost. If you are interested I can find the contacts for you.Tammy 43wcf
Thanks to everyone that has replied , it's nice to be able to talk without my daughter getting angry (cf thing ). i will look more into glyco-nutrients but i must say I'm a bit skeptical ..... Dr's tell me it's normal teenage years and they have said it will get harder before she wakes up ... She is just against this horrible disease -. I dont blame her but i have to be hard on her <img src="i/expressions/face-icon-small-sad.gif" border="0">. As for mrsa she was only treated once with Vancomycin because they didnt want her to become VRE ...resistant to it --- as she is already resistant to tobra but they still use it ....she was multi resistant psuedomons. She is normally on tob.tic, and fluclox when she goes into hospital --- fluclox oral not IV ... she has substantial staff ....but they dont say much .... I wanted her to go on the new trial cant remember the name ezithramycin ? something like that but because her LIVER functions hit over 4000 a few years ago they seem to think she cant go on it ...I do believe even thou they say mrsa lays dormant that she has got alot sicker even thou now they are saying she is clear ....But i'm lucky in the fact they treat her alot because they want to keep on top of things ...and I cant do home iV's because of the way she recents CF they want her in hospital so she can keep going to OT.. To help her get over this anger and try and help me i guess ....She has a great team I'm very lucky ! BUT they have reassured me even though she only has 63% lung function that she is doing well . I was aslo told by one DR if someone who is waiting for transplant and shows mrsa that no surgeon will touch thembecause they are @ risk going to surgery ? I have had conflicting storys as well .... thats why I am glad i found this site because you guys/girls live with it everyday and no offence to medical profession you would understand and know alot more <img src="i/expressions/face-icon-small-smile.gif" border="0"> ****hugz to you all ***** God bless xoxoxoxooxooxozgal australia ...
Hello. I want to try to clear up what you've heard about glyco nutrients. Cells communicate using 8 specific sugars. The primary diet for most red-blooded americans consists of 2 of the 8 essential sugars. The body can convert these 2 into the other 6 through a series of 32 boichemical conversions. This creates an unbalanced frequency in occurance for proper cellular regulation which leads to many autoimmune diseases and other ailments. Mannatech produced the product called Ambrotose which is a dietary supplement know to have healing power. It should not be taken in place of your current doctor's prescription nor should it be considered a cure all. It is listed in the PDR (Physicians Desk Reference). It has no side effects and is non-toxic. Ambrotose is a food source for 8 of these essential sugars. The philiosophy being this: Give the body what it needs to function properly and efficiently. Ambrotose is a simple, effective way to supplement your body's base molecule, the cell. Thus, supporting the body's regulatory systems (immune system).The philosophy of wellness is growing rapidly. Drug companies are attempting to copy this and other formulas in the market. Ambrotose currently has a world wide patent, making it extremely unique.Many of the drug companies want you to treat the symptoms not the problem as that is greatly more profitable. That is, unfortunately, the state of our health care system. Also, doctors only know what the Pharmaceudical companies tell them about prescription medication (Scary).Glutathione is a key antioxidant PRODUCED by the body. Ingesting it orally is not an effective substitute for the body's natural production. Effectively, you must stimulate Glutathione levels by supplementing natural production in the body. In tissues exposed to toxic shock, Ambrotose increased levels of Glutathione by 50% (Proceedings) Good luck with your health. If I can be of some assistance, please contact me at glyco-nutrients@comcast.net
Hi,I just read about your inquiry about Mannatech. My brother just recently informed me about Mannatech's products. The director of the company he works for is one of the board members of the Mannatech company.You can find out more on their website http://www.mannatech-inc.com/Greetings,Jan Jacob
HollyCatheryn
New member
I have heard of Mannatech but not in relation to CF. I put up a post about the supplement that I've been taking that has helped me. The contact name I posted was Steven Shute with Reliv International (<a href="http://www.relivonline.com/stevenshute">www.relivonline.com/stevenshute</A> or <a href="mailto:StevenShute@hotmail.com">StevenShute@hotmail.com</A> ) He can put you in touch with a number of people who have had good experience with this product concerning CF. One lady's 2 young sons (both with CF) have drastically reduced their need for Prevacid and their breathing treatments as well as boosting their weight gain and growth. Reliv is specifically designed to be easily digested which is why it seems to be so effective for people with CF and it is made to be balanced nutrition. It is more well rounded than say a Scandishake and so it feeds your body better. The principal here is just that when your body is nourished as fully as possible, it will grow better and heal better. I have found this to be true. There's not one magic ingredient here, but just a balanced combination of minerals, vitamins, and herbs. It is also well-suited for people who are post-transplant because it is not an overdose of vitamins or immune boosting steroids, but rather a perfectly rounded meal. I use it in addition to full reagular meals, but my husband who does not have CF uses it instead of some meals. There is more information about this on line, but if you want specifics about my results, please email me. I've been healthier in the last year and a half on Reliv than ever before even though I'm getting older. HollyCatherynhcmnjl@vvm.com
I'm a nurse, and one of my good friends has CF. I was hoping I could help clear up the MRSA thing. It is theoretical that if you cultured every nursing home and hospital, and their employees, you would probably find MRSA everywhere. Even normal, healthy people have different types of bacteria all over them. The problem isn't exactly with the MRSA, but with the compromised immune system. This applies to everyone. Your immune system gets weak and you are more suseptible to infection. You can carry MRSA anywhere in your body. If your immune system is weak, it is easier to get an infection when it is already there waiting. Doctors don't treat it unless it's an infection. The reason it's such a big deal is because the medical world gets scared when there are bugs that normally healthy people are getting, that are resistant to antibiotics. I have never heard of any lasting effects from getting an infection, but it makes sense if the MRSA is still present that she would be more suseptible to infection, and be sick more often. Hope that helps.
AbsintheSorrow
New member
I would be willing to guess that there are lasting effects from a CFer getting MRSA. Any lung infection that a CFer gets causes some kind of damage, and it will happen. There's no way around it, but it's not the end of the world, either. It may just be timing, but I never started going on IV antiobiotics until I got MRSA at 16. Now I'm on them roughly twice a year. But either way, it's not the worst thing ever.
I agree Emily- for months the Doctors told my husband ( 33 with CF) the MRSA was not causing his increase in infections and hospital admissions. However since he got the MRSA he has been on IV's every 4-5 months and his lung function has fallen . Before MRSA he was admitted once every 2 years .
I thought the same thing about Emily's MRSA but thought I was just imaging that her hospitalizations and IV meds started at the same time that MRSA showed up. I'm glad to know that I wasn't just imagining it! We never talked about it but since she is thinking the same thing...obviously great minds think alike! HEH!<img src="i/expressions/face-icon-small-happy.gif" border="0">