Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Thanks for the hugs !! I ordered the AFP Pep... It's such trial and error with all of this. We're just hanging in there. It's strange... When first taking the Zyme Prime, the diarrhea wasn't bad anymore, then when adding the Pep, it started again. Who knows....maybe it was also something he ate. I have to see about starting the No Fenol as well. God help him!! thanks again. Love, Divorced Mom of (age 5..non verbal, sensory,Autistic, etc) and (almost 3, VERY delayed awaiting further diagnosis) Re: [ ] Re: [ ) .QUESTION PLEASE --- Corey <lisa5867@...> wrote: > Well, then I started the Peptizyde. I feel he has > the wheat issues and he's lactose intolerant. Well, > I have no idea whether he has Phenol issues (he > probably does!). Since he started the PEP, he's > been more wired than usual, more " upset " , grabs me, > cries, and had stopped sleeping! He was actually > sleeping pretty well before (due to medications). > I've resorted to giving him Benadryl on top of > everything else JUST to get him to fall asleep and > not be up all night. Hugs to you mom! You may simply be seeing the effect of being more *with it*. It's a hard thing for a child to born into the world of awareness. My daughter had a hard time of it the first few adjustments. She is also sound and touch sensitive, which only made it worse. > I have to order the Enzymes and don't know whether > to try the AFP Pep or the regular. I also want to > try the No Phenol (I have one bottle), but am afraid > to try. I don't want to get worse. > Which Pep should I go with and when should I > introduce No-Phenol? If you open the capsule to serve the enzyme, go with AFP. If not Pep itself is fine. He will get worse on the new enzymes, always 3 weeks for us. BUT, he will get so much better after. Hugs to you again. This is a tough thing to go through. Take care, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Tina -- I know just how you feel. I quit all my meds 2 months ago (I do not recommend that people do that) and although I have been dealing with a more and new pain I still don't want to go back on any of them. In reality I know that I must and I will but this little rebellion gave me back some dignity and a feeling of empowerment, short-lived I know. Like I said I don't recommend going against you doc. But the feeling of powerlessness has to be dealt with sometimes. Take good care of yourself. Cheri [ ] Thanks!! Thanks to everyone for the thoughtfull responses. I have been so down lately from struggling with the pain and exhaustion. I called my rheumatologist yesterday afternoon and demanded to come off some meds. I have been on methotrexate for 2 yrs highest doses available/Arava and several other meds. my dr has promised to get me off some meds that arent really helping methotrexate/arava/prednizone/and i am also taking vioxx and enbrel. He has been worried to get me off these because i have episodes where i cant walk or barely move but I cant handle the effects on my mind and body. We are trying Enbrel for 3 months and if doesnt help going to Remicade. I have muscle relaxers and vicodin. I try and take pain meds as little as possible because I have 2 children. It is nice to read about everyone on here. It helps. I have been on anti depressants for 2 yrs now to help with the depression of this disease. Thanks for listening and I wish everyone a pain free day! Tina from Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Hey Grace, if it makes you feel any better, I've just had a fill and I'm back on liquids. I'm right with ya sister! But, I've lost 5 fabulous lbs this week. I'm fricken sexy is all I know. Who needs solid food! DOB 9/25/06 241/217/160 > > Thanks to all who answered my post and even more so to those who > actually read it. > I haven't loved being on clear liquids, but I sure wouldn't risk my > band slipping or worse over a few weeks of clear liquids. That's why > I just made it a point to slurp my chicken broth at the two of them. > I agree that I think Dr. A is cautious, but I'd rather that then the > alternative. I'm always surprised when I read about other Dr.'s > saying it's okay to have this or that so soon after surgery. But to > each his own. I waited too long to get to have the band that 2 or 3 > or 5 even more weeks isn't going to kill me. That and I just love Dr. > A and Dr. Campos too much to have to go back and tell them that I > didn't listen them and now look what I've done to myself. > So, thanks again for the answers. I'm off to have jello ... don't be > too jealous! ) > > Grace > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 Theresa - Best wishes and prayers to you tomorrow!! It sounds like you have an awesome surgical plan, and are in the bests of hands!!! You'll soon be on the other side - for the last time, I'm sure!! Kathy W.Theresa <tabd1@...> wrote: Thanks for the well wishes!!!!! I have to check in Monday morning at 5:30 am to start around 7 to 7:30am. Dr. LaGrone said it should take about 6 to 8 hours. He willdefinetly be taking out the rods from T12 to the sacrum. He will thendo a PSO osteotomy at L2 with possible multiple osteotomies higher up. He will be freeing up a small part where mynerve is pinched a little bit, fusing the transitional vertabrae onmy sacrum and reinstrumenting to about S2 or 3. He will also be addingthe pelvic instrumentation and looking very closely for any unfusedareas. My C7 is 14 cm to far forward of my sacrum, that's the reasonfor the one big osteotomy and the multiply smaller ones. Also itseems as if I have rotated some in the last few months. Hence, thereason why he will be looking very closely for any unfused areas orscrews that have come loose. He said I can still take all of my medsthe night before including the anti-aniexty medicine that I got about2 weeks ago. said in the morning they will have theanestesiologist come see me pretty quick so he can do his littleinterview and then give me the Versed earlier than normally given. My aniexty gets worse waiting for things to start. I will post back when I can.Theresa Building a website is a piece of cake. Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2007 Report Share Posted August 10, 2007 It is great to know that we have a site where everyone can discuss concerns and worries about CML. Thank you all for replying to my message. I need to call my doc and see what he has to say. My throat is so scratchy that I feel it is best to call him. Sometimes I feel that maybe I tend to look deeper into the side effect than what I am suppose to. I read up on what other CML patients experience and come to understand that eveything is just part of CML. That am not making myself sick and that I do need to be careful. Dx not that long ago and was put on hydrea and alluprinol for about two weeks. I was also put on gleevec 400mg once a day for the rest of my life or until resistance sets in. After two weeks of being dx my wbc went down to 32,000. Then 2,000,3,250 or so, finally I am at 4,000 or so. I have them all written down somewhere... anyhow slowly but surely I have been getting better. My next appointment is on the 30th of this month or sooner depending on my sore throat. The only thing is that I have to travel 2 1/2 hours ( Eagle Pass, Texas to San , Texas) one way everytime I see my doc. Which in turn I do not mind cause it is my life that we are talking about. Just a little something about myself and thanks so much for reading. It feels great to share with others who have a better understanding. I have all the support in the world but sometimes they don't really get me. You know what I mean??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 Hi Tracey, have you considered Dr theodora Mantzourani - she is our newest Medical Adviser and is highly qualified in Nutrition? See details in our web site www.tpa-uk.org.uk under 'Medical Advisers' and scroll down to her name. Contact details are there. Luv - Sheila Thank you so much for your replies, i will get a couple of the books suggested. Can i ask what you mean about which type of depression do you mean major clinical or minor, she has clinical depression.In my opinion she has suffered most of her life, but the stress of school and teenage life has made it worse.I agree that if we can find something natural that works in the long run it will be better for her.Does anyone know a nutrionalist that really knows their stuff on depression.Thank you for taking the time to answer xxxx No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.445 / Virus Database: 271.1.1/3146 - Release Date: 09/20/10 17:04:00 Quote Link to comment Share on other sites More sharing options...
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