Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 Dear Lori, Checked the thyroid twice, way at the beginning it was slightly out of wack and then three months later it was fine, sorry, wish it were so easy...had blood tests and an ultrasound, nothing. All fine. any other ideas? Particularly the dry mouth is driving me crazy. Imagine a mouth full of saliva but a feeling of a dry mouth, sticky lips in and out sticking to your teeth? Wierd. Judy Judy Judy, Many of your symptoms could be from an under active thyroid. A good test is to take your basal temp. Put a glass therm under your arm for 10 min before you get out of bed. If it is under 97.8 then chances are your thyroid is not functioning properly. Then maybe your doctor could let you try some armour thyroid. Many people will have normal thyroid tests but still need some thyroid support. For me I had arthritic pain in my knees, dry eyes, low libido.... the symptoms dissappeared when I treated my thyroid. Lori judy wrote: I have a question for everyone. Ever since my CFS has begun, about 9 months ago, I have suffered from very dry eyes and now also from a dry mouth. My eye doctor tested me and told me that I do have extremely dry eyes, as for the mouth, it was on and off and now, while I am taking medication to dissolve gallstones, it has gotten much worse, my lips feel extremely dry both inside and outside, sticking to my teeth, and the sides and tip of my tongue feel irritated and uncomfortable, although my mouth is full of saliva, a bit thicker than usual, but I had that problem when I was pregnant 16 and 14 years ago as well, profuse thick saliva, which was hormonal and went away right after giving birth. In any event my doctor mentioned something called sjogren's syndrome which I gather is an autoimmune disease that can be progressive and gives you a greater chance of lymphomas in many cases. I had the two blood tests for it SSa and SSb and they both came back negative but as my doctor said that I do have a slightly higher protein in my blood I should take another test as I might still have it in some form. Have any of you suffered with these symptoms? I mean really dry eyes needing drops every half hour to an hour...feeling gritty when you get up in the middle of the night to the bathroom, or the dry in and outside lips (vaseline is helping). Do any of you have or know about sjogrens related or unrelated to CFS? My doctor said that it would also explain the lowgrade fever, occasional joint pains and extreme fatigue, although as we all know these are also signs of CFS. In any event, any information, including remedies, natural and other, would be welcome.ThanksJudy Baumel This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 > Dear Lori, > Checked the thyroid twice, way at the beginning it was slightly out of wack and then three months later it was fine, sorry, wish it were so easy...had blood tests and an ultrasound, nothing. All fine. > any other ideas? Particularly the dry mouth is driving me crazy. Imagine a mouth full of saliva but a feeling of a dry mouth, sticky lips in and out sticking to your teeth? Wierd. > Judy Judy, How about candidiasis. It's a fungal infection of the intestinal tract. When I first got sick, one of the first symptoms I got was dry eyes and fatigue. As usual, mainstream docs don't recognise it as a problem because it is a generic resident of the digestive tract. The problem comes when you get an overgrowth. It is quite common and alternative docs treat it regularly. It's worth checking out if you haven't already done so. Luke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Luke could it cause fever? Who diagnoses it? None of the doctors here in Israel even considered it and the chinese practitioner to whom I went for seven months who took lots of money and his acupuncture and formulas helped me not one bit did not even mention it. Thanks Judy Re: Judy > > > Dear Lori, > > Checked the thyroid twice, way at the beginning it was slightly out > of wack and then three months later it was fine, sorry, wish it were > so easy...had blood tests and an ultrasound, nothing. All fine. > > any other ideas? Particularly the dry mouth is driving me crazy. > Imagine a mouth full of saliva but a feeling of a dry mouth, sticky > lips in and out sticking to your teeth? Wierd. > > Judy > > > Judy, > > How about candidiasis. It's a fungal infection of the intestinal > tract. When I first got sick, one of the first symptoms I got was > dry eyes and fatigue. As usual, mainstream docs don't recognise it > as a problem because it is a generic resident of the digestive > tract. The problem comes when you get an overgrowth. It is quite > common and alternative docs treat it regularly. It's worth checking > out if you haven't already done so. > > Luke > > > ------------------------------------------------------------------------ > Failed tests, classes skipped, forgotten locker combinations. > Remember the good 'ol days > 1/4053/4/_/531724/_/959384176/ > ------------------------------------------------------------------------ > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 > Luke could it cause fever? Who diagnoses it? None of the doctors here in > Israel even considered it and the chinese practitioner to whom I went for > seven months who took lots of money and his acupuncture and formulas helped > me not one bit did not even mention it. > Thanks > Judy Judy, Candida Albicans is the same bug that causes yeast infections in women. It is pretty common among people with CFS. There are blood tests and stool tests for it here, I can't say about Israel of course. Any doctor that has a wholistic or alternative orientation will be familiar with it. Antifungal drugs followed by probiotics and a restricted diet is a common treatment. AFAIK it does not usually cause fevers, but it may be one of the factors contributing to your symptoms. It is an opportunistic infection that can go out of control when the rest of your system goes haywire with RnaseL or immune disruptions. Luke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 ok shall try to check it out. Judy Re: Judy > > > Luke could it cause fever? Who diagnoses it? None of the doctors > here in > > Israel even considered it and the chinese practitioner to whom I > went for > > seven months who took lots of money and his acupuncture and > formulas helped > > me not one bit did not even mention it. > > Thanks > > Judy > > Judy, > > Candida Albicans is the same bug that causes yeast infections in > women. It is pretty common among people with CFS. There are blood > tests and stool tests for it here, I can't say about Israel of > course. Any doctor that has a wholistic or alternative orientation > will be familiar with it. Antifungal drugs followed by probiotics > and a restricted diet is a common treatment. > > AFAIK it does not usually cause fevers, but it may be one of the > factors contributing to your symptoms. It is an opportunistic > infection that can go out of control when the rest of your system > goes haywire with RnaseL or immune disruptions. > > Luke > > > ------------------------------------------------------------------------ > Old school buds here: > 1/4057/4/_/531724/_/959493694/ > ------------------------------------------------------------------------ > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 Amen, brother Kay Heizer Judy > >Hi, > >Mel and Judy are two of my very good friends from days in Ohio where I >worked as a school counselor before moving to Tennessee. My wife and I love >them both. > >One thing I do know is that if Judy misses a little grammer or spelling here >and there she and Mel will have an Eternity in Heaven to practice when the >days on this Earth are over. Let's forgive her for anything that isn't >perfect and Praise The Lord for a heart that is in the right place. > >Cliff > > >Get HUGE info at http://www.cures for cancer.ws, and post your own links there. Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by visiting http://www.bobhurt.com/subunsub.mv > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 Judy, There is an added risk of infection arising from the use of the larger vials. The risk is surely minute but exists. Because of my MVP I attempt to avoid infections as they can lead in rare instances to infective endocarditis (IE). This is why you take AB's before going to the dentist nowadays if you have MVP. Very small risk but potentially tragic downside. Steve B. B12 dosing > > > > > > > > > > > > > With IM hydroxycobolamine, is it preferable to set the dose just > > > > > below the point where one gets pink tint in the urine (signalling > > > > > excretion of excess)? My body seems to be absorbing it like a > > > > > sponge...I am up to 15000mcg/day and still no sign of too much > > > > > (really is helping, too). Concentration is 5000mcg/cc, I am using > > > > > three of the individual vials (in case I erred in reporting dose). > > > > > > > > > > Thanks all, > > > > > Jo > > > > > > > > > > > > > > > > > > > > This list is intended for patients to share personal experiences > > > with each > > > > other, not to give medical advice. If you are interested in any > > > treatment > > > > discussed here, please consult your doctor. > > > > > > > > > > > > > > > > > This list is intended for patients to share personal experiences with each > > other, not to give medical advice. If you are interested in any treatment > > discussed here, please consult your doctor. > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 Judy, It's not the dose that is the problem in your case. I'm sure you are taking cyanocobalamin and 1 mg. is a high dose for this type of b-12. We Cheney patients and many others use hydroxycobalamin in high doses for it's toxin-neutralizing capability as discussed already today. Steve B. B-12 strength?? > > My B-12 is 1,000mcg/ml! Thats right ONE thousand. All these years, am I accomplishing nothing because its so weak? I never knew. Or maybe I had something stronger at one time. I used to use a B-12 from my doctor in AZ that went by a different name, which I can't remember right now. But compared to the doses being discussed here my 1cc of this 3 times a week hardly seems worth the cost of the syringes! Any thoughts are appreciated. Thanks! Judy R. > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 In a message dated 3/5/01 9:13:01 PM Eastern Standard Time, Judithrehling@... writes: << I too didn't want my daughter stuffing envelopes or picking up trash downtown for everyone to witness. This September I started my own program in the ARTS. I contacted my local art center and got support from local agencies. We now have 12 students who 5 days a week attend classes in painting, drawing, crafts, karate, dance, ceramics, photography, singing, music lessons, computers, cooking, etc. Their progress has been amazing. Some of my students are in their 40's and had been sitting home for 20 years, others are just graduating from high school. My daughter is only 14 but I now have peace that there will be something appropraite in place when she graduates. My philosophy is, if it doesn't exist, invent it, and never settle for less. Judy Adopted mom to (amy 14, ds/adhd/ODD) (sara 15, ds/autistic/blind) (Marcel 21 ds/ocd) and Roxannne (28, ds and blind) >> Judy, I'm sure you don't have a lot of free time, LOL, but sounds like you could contribute a lot of good info to this list. We in turn could ask a thousand questions! LOL People never cease to amaze me, and you are one of them. :-) How long did it take to accomplish this feat, from the onset of the idea, to having it up and running? Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 I would love to answer any questions. Our first organizational meeting was in March 2000 and we opened in September 2000. Getting a license took the most time plus about 600 pages of paper-work. I had to write the program from scratch, designing eveything from a admission agreement to a discipline policy and then hire and train art teachers who had no special ed experience. The funny thing is that I am " just a mom " and only have a high school diploma (as you know, when you have a child with special needs there isn't much time for college or a career) but my kids future kept me focused and when I wondered what in the heck I was getting into they motivated me to keep on going. Guess I picked up a lot of experience on this journey they call life :-) Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 judy, i applaud you immensely!!! your the kind of mom i hope to be someday!!!:-) and you don't need a college education, as long as you have a heart to love with and arms to embrace with, you have more than most corporate ivy-league types i have worked with at a large law firm in dc.........not anymore thank goodness...but been there did that and i didnt like it.... keep up the fight and maybe someday i will be inspired as greatly as you to do something for my ashton.....take care and thank you so much for sharing......leah > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Leah, Thanks for the pat on the back, we all need them. This is a rough and long road and it helps to know we are not alone in this journey. I do trainings for parents on dreaming dreams and setting goals. It seems that because we get tired and discouraged we forget to see the beauty in our children and forget that they are motivated by those who love them and we need to believe that tomorrow can hold a wonderful and beautiful life for them. Your IEP goals need to support those dreams or you'll find yourself at transition time with skills that are pretty much useless. I looked for the strengths in my kids (which was music and art) and have had IEP goals in those areas for the last 5 years. (yes, the system fought me) but I WON! Last week my Amy (14 ds/adhd) performed with her high school dance troupe in a very competative contest with all the high schools in our county and was right out there in front. Talk about a proud mom. :-) Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Yes, I have not been receiving emails and not getting the ones I send either. Marisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Wow Judy, You are amazing. I can't even imagine taking 5 kids with Down syndrome shopping. Of course I do see groups of young adults shopping at Costco or Target or wherever and they seem to be very cooperative. I don't know if it's because of the practice or because they don't have autism too. When Brook was little and having reflux at 3 yrs he used to have huge tantrums and cry miserably every time we went shopping. It really put me off taking him places for a while. I know when he goes every Friday he is one of the most difficult kids to control. The other kids in his class seem OK, but Brook needs a one on one so he doesn't grab other people's food, throw things dump out drinks, drop to the ground, take off, start whining. He needs help waiting in line because he hates to do that. Anyway I'm looking forward to the day when he becomes easier to take out and he enjoys it. Right now he loves riding in the car, he just doesn't want to stop and get out anywhere. Plus his water obsession makes it really difficult to take him to places with water fountains, pools, ponds, streams, you get the idea. Marisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Wow Judy, you are awesome! I think of how hard it is to handle in those kinds of situations and I can't even imagine handling four more [kids]. You are inspiring! Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Thanks for the compliment Terry...I am afraid the blessings are ours for the gift to love and be loved by such special kids. We are in no way special..just have lots of love and compassion for kids. I am adopted myself and my husband is an only child..we just wanted to give something back. There are days though when I wonder if we can keep up this pace in our old age. I just turned 50 and one of my kids felt led to announce it to the entire assemby. My husband used to say if you have a good attitude you will stay as young as you feel...the other night he surprised me by saying " man am I tired " , last week we celebrated out 31st wedding annivesary. Judy` Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Judy, Yes, it really does help to know that other people are dealing with these same issues and that people are there for you and support you when it gets rough. My DH is leaving for Philly tomorrow and won't be back until Friday night, so I have 4 days ahead of me without him. Plus we are having a big heat wave here right now and thus the rolling black outs are coming around again. We had the funeral for my grandmother today and the prayer vigil last night so it has been a couple of very hard days. Hopefully we have now been through the worst and will have a reprieve for a while so I can regain my strength and stamina. Probably I'll feel fine just when Brook is off school for summer vacation. Marisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 In a message dated 5/8/01 4:55:05 AM Eastern Daylight Time, Judithrehling@... writes: > " , last week we celebrated out 31st wedding annivesary. > Happy Anniversary Judy. Duff and I just celebrated our 21st!! Man, I thought WE were married long....LOL Hope it was a good one!! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 I think we are getting old...walked and ate at the mall..just felt good to be out without the KIDS! Congrats on your 21st. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 << last week we celebrated out 31st wedding annivesary. >> Happy Anniversary Judy! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 Judy, I live in Canton, Ohio. Amy in Ohio Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 well my boys use baby wipes for wiping, easier to handle and cleaner too, unlike t-paper, which shreds or sticks to skin, not to mention is fun to unroll,weeee,lol. For nathan he prefers us to wipehim,and ive caught daddy many times just wiping him, and i have to scold daddy, reminding him to let nathan do it a few times and get what he missed if he has.Also we let nathan in the bathroom if we are going, (at almost 10 he is starting to stop this and even take self) and he has seen us wipe many times, Ive even caught him wiping himself as his little brother does on ocasion, then as soon as he sees me or daddy he goes here, and wants us to wipe him, so i have to encourage him to do it again do our little happy dance,lol. OH! one last thing, we get those One-up or pop up wipes from pampers, they pop up and come out one at a time just like kleenexes, very easy and accesible, and the trash can is right there beside the toilet, with all these years of practice he knows to throw in trash NOT toilet, now if i could get him to lift the ring,lol. shawna. > Judy > > > Hi Judy. i know exactly how you feel. I have a 23 yr old daughter with > Downs that just within the last 6-7 months has had a great increase in > what were minor autistic traits. It took me by surprise. I have several > books that never mentioned this. She's being treated(as of last week) > with an antidepressant. Its helpful, shes more her happy go lucky self, > but it hasnt helped with her sleeping problem(day and night reversal) > Also, to the list; theres been several letters re: self-care issues. My > daughter has been well toliet trained for a long time but one > outstanding problem that I havent been able to address is the wipe! > She's very plump and figuring out how to teach her to wipe herself hasnt > been successful. Anybody with ideas?! I'm also afraid to persist too > much and have her wiping wrong and ending up with urinary infections. I > 've just been putting up with the soiled panties(often a little more > than soiled!) I'm so glad I found this list, its so helpful to not feel > alone with these problems. Sandee, mom to Tylie > > > -------------------------------------------------- > Checkout our homepage for information, bookmarks, and > photos of our kids. Share favorite bookmarks, ideas, and other > information by including them. Don't forget, messages are a > permanent record of the archives for our list. > > > -------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 In a message dated 9/4/01 9:55:00 PM Eastern Daylight Time, jlovchik@... writes: << I'm having Dan tested for auditory processing difficulties--I know he has problems in this area in addition to perceiving us " yelling. " Judy >> Judy, This is very interesting. It was just suggested to me that we have evaluated for auditory processing difficulties because of his sensitivity to sounds. I never connected it to the " yelling " perception though. Is this connected to the auditory processing because of the way they hear the actual volume of a voice or just plain perception? Please keep me posted and let me know how it goes with Dan. Take care, /NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 HI Judy, Just wanted to ask ? Did you ever meet a Branston at those meetings ? She has a DS daughter , lives in Ca. , but was part of the TNI group from the Trisomy 21 Research . Always traveling . Just curious . Take care . Irma ,STeven 13,DS/ASD. > Hi, > I went to the eastcoast suaree last year. That's the one where > everyone meets in W. Va. I met a lot of people from the upsndown's list. > We'll probably go next year. I want to work with a little more before I > commit to that trip. Last year my husband spent most of the time in the hotel > with because couldn't take the crowd. I met Nora Lee at a TNI > meeting a few years ago. That's about it. I live near Reading, which is about > 60 miles west of Phila. I'd love to meet for lunch with anybody whos' in the > area. > Judy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 Judy, my son Tom is on periactin too for the exact same reasons! Just wanted to let you know that you arent alone in your struggle for your child to gain weight! My son is only 6 but...maybe a job at a fast food restaurant would help him! Amy in Ohio _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
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