Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 Dearest Lynne: Please don't ever feel like you don't have anything to offer to this group. I haven't been able to be a part of the group like I used to for several reasons but one being I haven't gotten all of my energy back yet. My 28 year old daughter has AIH and we did a living donor transplant 5-18-01 and thank God it worked. She was one of the 10% that the medications were not doing the trick. Lynne, take it from me sweetie you can be depressed and not know that's one of the problems. Also that's one of the side effects of Prednisone and it's not anything to be ashamed of. Let's face it being sick and not being able to do the things a young girl is used to doing is enough to be depressed about. The pain you are having is also working on your ability to function. As hard as it may be try your best to stay positive and tell your doctors how you feel. After all your paying the bills and you know how you feel, they don't. Jodi, my daughter always said she felt the best when her blood work was the worst. We don't know why this is but it happens with some people. We are all here for each other and you say anything you need to, it helps to get it off your chest and know someone is listening and cares. Have hope and faith cause God hears your prayers. This wonderful group of people and prayers are what got Jodi and I through our ordeal. Take care and God bless. Genny/Jodi's Mom Living Donor Transplant 5-18-01 University of Miami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Autumn: Yes, they did diagnos her with pseudo tumor. You were talking about the other thing that he has because of the steriods, is that all that weight gain? She was 42 lbs when she got sick, then went up to 94. She's 84 right now. I've heard them talking about her weight. Which is sooo aggravating. All the car seats have a weight limit on them. None of them were for her, and she still needed to be in a car seat. I called every company and chewed their ears for a while about that. You didn't mention what source of help worked for your baby. I call them all babies, it drives my son and daughter crazy, we're not babies they'll say. The whoosing sound she does hear. It was happening while we were with the nuero opthamologist, he didn't act anything about it, so I figured it went with the whole picture. Thank you for replying. Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 In a message dated 1/5/03 7:36:37 AM Pacific Standard Time, Bejenski@... writes: > . The whoosing sound she does hear Lynne, The whooshing sound can be from pressure, either Neurological or in the ear. I get this when I have a sinus infection because of pressure on the Eustation tubes. My Neuro-Opth. also mentioned that meds can affect this. I think Advil and other pain relievers can cause this, too. Does she have many sinus infections?? Sandi, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Sandi: No sinus infection at the moment. We drew blood again this morning, so I don't know if her sed rate will still be up or not. We'll see. Thanks. Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Lynne: You and your family are in our prayers. (mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Lynne Are you on antidepressants, if not you might want to think about them. You seem to be in this alone, and without much support. I hardly ever reply on here but make no mistake I read them ALL. This is a great place to visit and the support here is tremendous. I have found that the people here listen and never judge. Glad your here and talking. Hope all goes well with you and your treatment. You will be on my prayer list. Dreams are whispers from the soul.Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Lynne Are you on antidepressants, if not you might want to think about them. You seem to be in this alone, and without much support. I hardly ever reply on here but make no mistake I read them ALL. This is a great place to visit and the support here is tremendous. I have found that the people here listen and never judge. Glad your here and talking. Hope all goes well with you and your treatment. You will be on my prayer list. Dreams are whispers from the soul.Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Thanks Tubs, No I was crying alot when I first heard and was deciding what to do about this hep thing. Hence why I called the doc and he thought the Ambien might do the trick, which it had. I just never imagine Steve would pull this crap, not knowing how sick I could have been, Lack of caring on his part. -----Original Message-----From: Tubs46@... [mailto:Tubs46@...]Sent: Sunday, January 11, 2004 12:22 PM Subject: Re: [ ] Lynne Lynne Are you on antidepressants, if not you might want to think about them. You seem to be in this alone, and without much support. I hardly ever reply on here but make no mistake I read them ALL. This is a great place to visit and the support here is tremendous. I have found that the people here listen and never judge. Glad your here and talking. Hope all goes well with you and your treatment. You will be on my prayer list. Dreams are whispers from the soul.Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Morning Lynne hope the shot is going well "A man who has committed a mistake and doesn't correct it, is committing another mistake."-Confucius-Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Hopefully they will all be as mild.... "A man who has committed a mistake and doesn't correct it, is committing another mistake."-Confucius-Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 It will be fine....Just make today a day of rest...It's Sunday.. "A man who has committed a mistake and doesn't correct it, is committing another mistake."-Confucius-Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Gee how did you know I was up. ) I think I am getting used to the shots, seem to get easier and easier. But notice blurred vision a lot more this time around. But so far my moods haven't gone off. Very bored but content. -----Original Message-----From: Tubs46@... [mailto:Tubs46@...]Sent: Sunday, January 25, 2004 9:06 AM Subject: [ ] Re: Lynne Morning Lynne hope the shot is going well "A man who has committed a mistake and doesn't correct it, is committing another mistake."-Confucius-Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Well they do say they get easier, so I am hoping. But I always get nervous right before the shots, wondering what will happen this time. -----Original Message-----From: Tubs46@... [mailto:Tubs46@...]Sent: Sunday, January 25, 2004 9:41 AM Subject: Re: [ ] Re: Lynne Hopefully they will all be as mild.... "A man who has committed a mistake and doesn't correct it, is committing another mistake."-Confucius-Eddie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 I have to think on this one for awhile. He kind of thru me for a loop saying that. All this time I thought I was doing really good, being able to work and all and didn't think the side effects were that uncommon, heck it could be a lot worse. But gosh the Hep doc never even looked at my rash once, the last two visits. With my luck I could have ring worm or scabies or something. Just makes me wonder if I should think about changing doctors. Lynne [ ] Lynne Not that I've experienced this nor do I have to undergo tx, but if your bloodtests are looking good, doesn't that mean tx is working? AND, isn't it YOUR decision whether or not to continue tx? I wish you the best! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 It never hurts to have a second opinion.... > I have to think on this one for awhile. He kind of thru me for a loop > saying that. All this time I thought I was doing really good, being able to > work and all and didn't think the side effects were that uncommon, heck it > could be a lot worse. > > But gosh the Hep doc never even looked at my rash once, the last two visits. > With my luck I could have ring worm or scabies or something. Just makes me > wonder if I should think about changing doctors. > > Lynne > > > > > [ ] Lynne > > > Not that I've experienced this nor do I have to undergo tx, but if > your bloodtests are looking good, doesn't that mean tx is working? > > AND, isn't it YOUR decision whether or not to continue tx? > > I wish you the best! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi Chai Palm How do you know that you have end stage liver disease? What are your symptoms and what tests did they do? What are you doing for it? Thanks Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 I just sent you a post entitled lab test interpretation. I am going through the same stuff with the possibility of lupus myself. I stumbled onto this yesterday. Give it a whirl! Good luck! Kim Http://www.ascls.org/labtesting/qform.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 At 07:01 AM 12/06/2005, JCs Girl wrote: >-who is determined to lose 7+ pounds this Christmas season instead of >the 7 pounds gained by the average adult. That will put me 14+ pounds >ahead of the norm, won't it? :>) HI LYNNE!!! i am so sorry for this late reply to your message. i like the sounds of your goal and also your sense of humour. hang onto that because it will see you through. how are your workouts going now? i hope that you are doing well. please post again and let us know. :*carolyn. -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.1.371 / Virus Database: 267.14.1/206 - Release Date: 12/16/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 OOOOOPS,I should have said Orlando Florida.I did not know there was one on the west coast also Esther Warkov wrote: > Lynne, > > I'm sorry, I don't know anyone in Orlando, just Seattle WA. e > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2007 Report Share Posted October 23, 2007 Hi Lynne, I know the feeling! !!!!!!!!! Just remember, you are doing the best you can to help your daughter. I always feel bad when I discipline my daughter because I know she is ill, but than again, I know that her behavior would not be accepted in society, so just think of it as a " teaching tool " . Does your dd have mood issues as well as the ocd? I used to punish my dd for her rages when she was younger, than after years of therapies, etc,I learned the best thing to do is either hold the child or remove yourself so she has no audience. It sounds like you are doing the right thing! Hugs Judy lynne llerrom <bo_swoman@...> wrote: Judy, This is Lynne, mom to Sis. She has the " feral " look to her at times, will scream, alll you mentioned for hours. I have to hold her down at times. How do you deal with this ? Usually after one of those I cry outside feeling like the worst mom in the world for having to hold her down, or discipline her. Lynne .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Judy, I've tried holding her. Removing myself, that too, she follows me around repeating " but moma " . In public, she stays stock still and screams " don't leave me " . Her therapist has told her people will take that wrong, it doesn't matter. So the therapist said to gently push her out the door, or to her room, etc. Lynne' jchabot <jchabot@...> wrote: Hi Lynne, I know the feeling! !!!!!!!!! Just remember, you are doing the best you can to help your daughter. I always feel bad when I discipline my daughter because I know she is ill, but than again, I know that her behavior would not be accepted in society, so just think of it as a " teaching tool " . Does your dd have mood issues as well as the ocd? I used to punish my dd for her rages when she was younger, than after years of therapies, etc,I learned the best thing to do is either hold the child or remove yourself so she has no audience. It sounds like you are doing the right thing! Hugs Judy lynne llerrom <bo_swoman@...> wrote: Judy, This is Lynne, mom to Sis. She has the " feral " look to her at times, will scream, alll you mentioned for hours. I have to hold her down at times. How do you deal with this ? Usually after one of those I cry outside feeling like the worst mom in the world for having to hold her down, or discipline her. Lynne .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Hi Lynne, My dd follows me around also when I leave the room and when I try to put her in her room, she'll literally roll out into the hallway and kick her legs up onto the wall, etc, etc. Try locking YOURSELF in your room or bathroom. Even if she is screaming at the door, you can at least be alone and count to ten or try to tune her out. Sometimes you just have to do what you need to do for yourself to keep your sanity! Hugs, Judy lynne llerrom <bo_swoman@...> wrote: Judy, I've tried holding her. Removing myself, that too, she follows me around repeating " but moma " . In public, she stays stock still and screams " don't leave me " . Her therapist has told her people will take that wrong, it doesn't matter. So the therapist said to gently push her out the door, or to her room, etc. Lynne' .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Hi Leonie, I have used the Three Lac product for Candida and I thought it was great! good luck, Emma ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 NAC stand for N-acetylcystein, an amino acid. Its main use is for liver protection when taking a high load of drugs. There is some indication that it can dampen the action of some antibiotics. An alternative is milk thistle extract which acts the same way. Good Luck, leonie cent wrote: > > Hi Lynne, > > Thanks for all your great advice about supplements etc, and I'll > definitely get the best enteric coated pro-biotics I can find. When > you say NAC, do you mean L-Glutamine ? And ALA is Alpha Lipoic Acid, > right ? > > It's going to be hard to stay of sugar, but I guess I'll have to be > good. Have you heard of the Three-Lac product which is supposed to > cure Candida ? > > Well, I'm glad you're busy doing stuff you love with your > horticulture, instead of sitting in front of the flippin computer all > day like I do. One day I might get a life too ! > > All the best to you, > > Leonie > > Re: rheumatic diet and RA > > Hi Leonie; > Believe me,AP works very well but you often have to fiddle with the > dosage and the different antiiotics.Anything you need to know about food > I can tell you.The thing about antibiotics id that they kill all > bugs,the good and the bad so that is why you have to take a good > probiotic a couple of hours after the antibiotic.Make sure you get the > enteric coated ones.Those that are not disolve in the stomack and the > acid will kill just about all of them.Only H Pylori and a couple other > bugs can survive stomack acid.You need the coated ones that disolve in > the small intestine.Even though you take probiotics you can still have a > yeast problem so the lower the dose of antibiotic the better.You can > usually use more antibiotic if you avoid all sugars that feed yeast.The > foods that cause inflamation are grains,other than rice, nightshade > vegetables and of course SUGAR the all time trouble maker. > I am a scientist by education,archeolog ist/paleoanthrop ologist and > because of this I had to take Pre-Med.I found food so interesting that > dietetics became my Minor.Many supplements are not of much help.If you > get yeast ALA and Milk Thistle in combination can help and so does > grapefruit seed extract but since you are on Celebrex grapefuit is not a > wise decision as it will intensify many drugs to the point they can be > toxic.NAC is good as it is one of the precursors to glutathion which is > the master detoxifyers of the body.Take it along with niacinamine. ..not > niacin.Vitamin C will help prevent the bruise like marks you can get > from minocin if used at high dosage for a long time.Low dose of 100mg 3 > times a week probably will not cause a problem.If you are on mino for a > couple of years it is a good idea to rotate to a different antibiotic. > etc,etc,etc. If you have questions,just whistle.I am in remission from > SD and am super busy with my orchid greenhouse andpreparing for > severalupcoming shows,so I don't get to the computer for more than a few > minutes now and then.Eventually I will answer you.Oops,forgot to mention > that if you are over 40-45 you are most likely to be low on stomack acid > so make sure to take digestive enzymes with your meals to prevent more > gut problems.All of us with these crazy diseases have gut issues > wheather you know itor not. Lynne > > leonie cent wrote: > > > Hi everyone, > > I'm going to indulge myself and rabbit on about my situation for a few > > minutes... hope you don't mind. > > > > I know I've mentioned this before, but the reason I got sidetracked > > from doing the AP much sooner, was that I went down the road of > > thinking I could cure my disease by eliminating certain foods which > > were triggering the symptoms (the Leaky Gut thing) and taking > > supplements (funnily enough someone on this list told me about the > > diet thing, however I was previously a vitamin junkie anyway . > > Also, I was paranoid about antibiotics, as I've read that they cause > > illness in the first place by mucking up the body's eco system. I > > guess the AP can help Leaky Gut by killing the bugs that cause it in > > the first place ? > > > > I'm sure that some foods trigger pain, but I don't know which ones and > > couldn't be bothered finding out, since it's too hard to go on > > elimination diets etc. I just try to keep things down to a dull roar > > by not eating the main offenders like wheat and dairy, but it's hard. > > When the pain gets bad, I go on a fast for a few days and that usually > > gets me back on track. I also found some natural remedies that are > > great anti-inflammatories , and have managed to keep off the drugs like > > Methotrexate etc, just taking Celebrex. I think all this will hold me > > in good stead for taking on the AP in a few weeks. > > > > Is anyone else on the list into the supplement " thing " ? I guess I > > still feel a bit anxious about taking antibiotics, and want to make > > sure I do the right things re diet and pro-biotics/ supplements etc. Be > > good to swap notes with others. > > > > All the best, > > > > ~Leonie (Canberra, Australia) > > leoniecentbigpond (DOT) com <mailto:leoniecent%40bigpond.com> > <mailto:leoniecent% 40bigpond. com> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hi Leonie; In my opinion as a scientist MP makes the most sense as the " science " is there for all to study.It is terribly confusing even to people like me so I can just imagine that it can really go over a person's head.The only reason I am not on it is because I can't stay away from high light until I wind down my orchid nursery and that will take a few years.I am sure that Dolores can give you a more personal view of it as she has been on MP since the fall and is doing very,very well even in phase one. Lynne leonie cent wrote: > oh that's interesting stuff Lynne... I must get into the minerals > instead. When you start getting hooked on different supplements, it's > hard to wean off them again. And usually the more expensive, the > harder to get rid of haha! I had a look at the MP website and read a > bit about the philosophy of no supplementation which surprised me. I > don't know much about the MP protocol etc in comparison to regular AP, > but my doc who I saw for the first time last Monday says he does the > MP. Do you know much about the MP and how it differs from regular AP ? > > Best, > Leonie > > rheumatic Re: finding a doctor > > > > Hi , > > > > How are you doing? > > > > Just curious, would you be ope3n to alternative solution? Have you tried > > natural supplements? The reason I'm asking is because I have a > > cousin who has RA and I asked her to try these 2 strong antioxidants > > called OPC-3 and ORAC from Isotonix line. She was a bit hesitate in the > > beginning, but she tried it anyway because it's all natural. She > > took it the first time on April 2007. She went to doctor in May 2007 and > > her C-reactive protein went down from 86 to 68. In August, she went back > > to the doctor again and this time her C-reactive protein value went down > > drastically to 4.4. Her doctor was surprised. My cousin looks so much > > healthier now, less pain, getting better everyday. Not totally cured > > yet, but she has a lot of energy now and looks so much healthier. Plus > > it's all natural, so no side effect. > > > > Those products were recommended by my friend who is a Nutraceutical > > Consultant. I got those products from his website: > > www.marketamerica.com/zingo <http://www.marketamerica.com/zingo > <http://www.marketamerica.com/zingo> > > <http://www.marketamerica.com/zingo > <http://www.marketamerica.com/zingo>>> > > > > Ok, good luck! > > > > > > > > > > Hello- > > > > > > I have had RA since 1988, when it hit me at age 20. I have a severe > > > case: probably need a hip replacement now, curled hands, etc. etc. I > > > started the AP in 2000 or 2001, then stopped it within the year for > > > personal (non-medical) reasons. I'm ready to begin again and want > > > some opinions regarding doctor selection. > > > > > > I live in a small SE Kansas town with limited doctor choices. My > > > local doctor will not prescribe AP, nor will two rheumatologists I > > > have approached (no surprise). I think an M.D. in a nearby town who > > > is known to take a more wholistic approach to medicine would prescribe > > > the AP. > > > > > > I'm wondering, though: Because I have severe, long-standing RA, would > > > I be better off making a trip to see Dr. Franco in California? That > > > would be a convenient choice, because he does all of the testing so I > > > wouldn't have to find a lab, find someone to send off a blood sample, > > > and other logistical considerations. > > > > > > What are your opinions? Would I benefit from seeing Dr. Franco? Or > > > should I continue looking locally? > > > > > > I know the choice is ultimately mine. I am not looking for anyone to > > > make my decisions for me. I'm simply asking for your experiences and > > > opinions so I can use that information to make an informed decision. > > > > > > Thanks for your time! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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