Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 hi all! sorry hvnt posted much cos im so jetlagged for one and the other is i hv so much mail in my mailbox that im still catching up!u!!!!!! yest i told myself that at the time i get groggy and sleepy i will stay online so that way i wont sleep....and i got the worst headache of my life!!!! it started from above my eye!!!! very strange! i hv never had a headache like that in my life!! i hope alls ok cos we were in miami and orlando and i hv a feeling i exerted myself a bit too much! i am going to take it very easy the next couple of days!! hope u all are doing well and best wishes for the news yr!!!!! Karishma. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Sue, I just read your introduction. I hope your daughter is feeling better. My son is also suspected to have systemic jra, although they won't make a definite diagnosis until he shows more signs. He is 2 3/4 and has 2 episodes of persistant high fevers, the second of which had us in the hospital for a week of testing. They too came to the conclusion that it was a rheumatic problem that had to declare itself. After the fever resolved he limped one morning and complained of knee pain, with no swelling. He's been fine since then (1 month ago), until today he woke up with a slight fever (this is how it always starts), so I know we will have at least 10 days of this. Hopefully high dose ibuprofen will do the trick, but after hearing everyone's stories, I'm so frightened of the real joint problems that my be in front of us. Is your daughter is preschool? How has all of this effected her school experience? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 , I was just reading your post and thought I would share my daughter's progress so far. She has had 105 to 107 fevers every 3 weeks since 3 months of age. She is now 4-1/2. To date, we still do not have definitive diagnosis. She too has had joint pain and swelling with no lasting effects, therefore, they are hesitant to diagnose Systemic. She has had the rash (seen by Ped. Rheumy), enlarged lymph nodes, enlarged spleen, high sed rates, etc. Just try to remain positive. This is such a tricky disease sometimes that it takes a while for definitive diagnosis. Also, it doesn't affect all kids the same way. We are thankful there is no ongoing joint damage at this time, but that is a double-edged sword. No joint involvement, no definitive diagnosis. Oh well, I always read posts and know that we are lucky to just be dealing with what we are dealing with. It gets weary sometimes and I wonder if it will ever end, but I keep hoping that it will soon ease for her. Take care. Angie Re: Hello >Sue, >I just read your introduction. I hope your daughter is feeling better. My >son is also suspected to have systemic jra, although they won't make a >definite diagnosis until he shows more signs. He is 2 3/4 and has 2 >episodes of persistant high fevers, the second of which had us in the >hospital for a week of testing. They too came to the conclusion that it was >a rheumatic problem that had to declare itself. After the fever resolved he >limped one morning and complained of knee pain, with no swelling. He's been >fine since then (1 month ago), until today he woke up with a slight fever >(this is how it always starts), so I know we will have at least 10 days of >this. Hopefully high dose ibuprofen will do the trick, but after hearing >everyone's stories, I'm so frightened of the real joint problems that my be >in front of us. Is your daughter is preschool? How has all of this effected >her school experience? >- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Hello , I ran out of room in my first post, didn't realize how much space I had and how much I had written! The doc did give her the diagnosis of systemic onset and that is the reason he changed her meds. Going to try and be real aggresive from the start. I don't know if these meds are this quick acting but she started them on the 12th and it seems to be helping the swelling already (high hopes). The time between her first visit and the second was (still is) very scary because it seemed to be affecting so many areas. There were times that she couldn't walk or couldn't hold her cup. She is still hurting a lot but the swelling doens't look so bad. When she first got the fevers and rash she didn't have much of a break from them other than a few hours every day, they were pretty persistent. Maybe that is a good sign for your son, that he is getting a break from them. Mackenzie is not in preschool yet. She should start this coming school year. I am worried about how she will fare there too. I am concerned about the pericarditis they said she has, did they find anything like a heart murmur with your son? (What is his name?) Or maybe anyone else? Is this something that anyone has any experience with? I am glad I found this list. I think it is very informative and helpful. I hope I haven't rambled. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Angie, Thanks for your reply. What do they treat your daughter's fevers with? Is she on any meds permanently to try to lessen the fevers? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Sue, You sound like you are hopeful that your daughter is getting a little better every day. My son, Zachary, did have a small pericardial effusion (fluid around the heart) when he was admitted to the hospital. It was very small, and they didn't think it was going to lead to any problems. Has your daughter been seen by a peds cardiologist for this? I understand your worries about preschool, but if you communicate with the teacher and school in advance, I'm sure they will accommodate your daughter in any way they can. Although Zachary isn't in any pain as of yet, he has had a lot of emotional trauma from his hospitalization, and as a result is having a tough time with separation anxiety. Our teacher in his pre-preschool is very senstive to him and the situation. We are seeing his rheumatologist later today, so I'm hoping for some helpful info. Thanks. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 , She was until 1-1/2 months ago. She was on Plaquenil, Naprosyn & Zantac. She has since been taken off all those and now, when the fever hits, I give her Motrin for comfort and a 1 time dose of 40 mg of Prednisone. Prednisone is a life saver but I hate. She is eating us out of house and home (and she isn't very big)! Also, the mood swings are terrible. Oh well, you have to love it and hate it at the same time. We give her the Pred early in the am and by late afternoon, what was once a 106 fever goes to normal or sometimes less than normal. Angie Re: Hello >Angie, >Thanks for your reply. What do they treat your daughter's fevers with? Is >she on any meds permanently to try to lessen the fevers? >- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Would cashew nuts be considered a no no on a candida diet? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 In a message dated 2/6/01 4:45:50 PM Central Standard Time, SCZMS@... writes: << Would cashew nuts be considered a no no on a candida diet? >> SOme say yes, some say no. The nuts should be plain and unprocessed. You probably shouldn't eat them every day. Maybe every third or fourth day would be ok. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Hi - welcome to the list! > tomorrow, as well as the usual Colloidal Silver. Any other suggestions, > and dietary help? You probably know this already, but candida's a tricky beast and develops resistance to antifungals in about a week, so you'll need a little armoury of different types. Rotate them every 4 days or so to outwit it. Some good ones are olive leaf extract, oregano oil, garlic, caprylic acid, or pau d'arco. Get yourself a good-quality probiotic supplement and take it daily, an hour or so after your antifungals. Biotin is also useful, as it helps stop the candida growing roots. Are you seeing a doctor of any kind? If you can, find yourself a good naturopath, homeopath or holistic nutritionist who has experience at treating candida and will take the time to get to know your medical history. As for the diet, it's not as bad as it...who am I kidding??! It's a nightmare at first, but you'll get used to it. We're trying to gather some recipes at http://www.willow-web.net/cookbook/ and there are a couple of links off that page to useful sites. Another useful resource is the Healthy Awareness candida forum at http://www.healthyawareness.com/candida_general/ which has a support board, a recipe board, a massive searchable archive, and all manner of petty bickering to take your mind off how you feel!! Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Hi , Welcome to the group, I know what you mean, I'm so grateful to have found this group too, as its a tremendous help to me. I wish I knew about it when I first started dealing with it last year, as I did it for 4 months, but was missing a vital part of the programme! Yo could try rotating anti-fungals as anne said so with colloidal silver, gse and something else. But the diet is the most essential part of the programme, you could try going low carb for faster results, and you also need to cut out allergens such as mold (especially nuts like peanuts), fermented products etc, and anything else that seems to be bothering you. Good luck Faisal hello Hi there I have just joined the list, and I am very grateful to have finally found one that deals with the ins and outs of candida. I have battled with candida for about 10 years full on, and have had it on and off for years before that. It started as Interstitial Cystitis, and then after 18 months, turned to the itching that never goes away. I have been on a detox. diet for about a week, and have just got over feeling like my head is full of cottonwool, and the headaches are subsiding. Also, my blood sugars went crazy, and heart palpitations abounded! It was awful. I am going to start GSE tomorrow, as well as the usual Colloidal Silver. Any other suggestions, and dietary help? Thanks again . Oh yes, the hot spicy thing - when I had my cystitis problems, I was told not to eat hot, spicy foods, the reason given was that they heat up the system. Candida could be classified as a " hot " illness, in that it causes burning and itching - so hot foods could make this worse. Most herbs are fine, its just more the " hot " ones like cayenne, Tabasco, chilli that it may be wise to stay away from. Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 I have battled IC also. Stay away from cayenne, caffeine, chocolate, spicy foods, etc. I am also a bit sensitive to hops too. I have a book called...You don't have to live with cystitis by Larrian Gillispie MD. It is really informative. The book tells of many foods that stir things up. The spicy food one is so hard for me to do...I love anything hot and spicy..but that irritates the lining of the bladder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Hi , I've found cashew nuts very allergic, as they contain more mold. Test to see if you're allergic to mold, it's usually gives you a mentally foggy feeling. Also, if eat some cashew nuts and can't stop that could also indicate it, as we tend to crave things we're allergic to- that's what happened to me. Faisal Re: hello Would cashew nuts be considered a no no on a candida diet? Thanks Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 LOL...I just had a mouth full of cashew nuts as I was reading this. Thanks for the rotating tip. Interesting. About 2 years ago I started using CS (colloidal silver) for candida, and was symptom free for 2 months, then it came back. This would explain it. The Lord only knows what I have done to my system not rotating! Do you recommend 4 days on one, then another, then another, then start with the first one again? Am I reading this right? Can I find a list of what not to eat and what I can eat anywhere? Just want to check it against mine... Thanks . Re: hello Would cashew nuts be considered a no no on a candida diet? Thanks Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 I do not have IC anymore. My urethra is still irritable, but I put this down to the candida. I think there are probably a lot of women diagnosed with IC, that really have candida as its root cause. Thanks again Re: hello > I have battled IC also. Stay away from cayenne, caffeine, chocolate, spicy > foods, etc. I am also a bit sensitive to hops too. > > I have a book called...You don't have to live with cystitis by Larrian > Gillispie MD. It is really informative. The book tells of many foods that > stir things up. > > The spicy food one is so hard for me to do...I love anything hot and > spicy..but that irritates the lining of the bladder. > > > > > > > Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE ! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 > The Lord only knows what I have done > to my system not rotating! Don't worry - you've probably jsut got CS-resistant candida now, but other antifungals should work fine! Get yourself 3 or 4 different ones, and take them for 4 days each > Can I find a list of what not to eat and what I can eat anywhere? Just > wan= t to check it against mine... There are various lists (oh for a consensus!), but the basics are no sugar, no yeast, no fermented foods, no wheat (usually), no (or extremely limited) fruits and no dairy (although there's a question mark over live yoghurt). This is quite useful... http://www.infosky.net/~alexmi/candida.htm ....and this is a three-level diet.... http://www.candidapage.com/candiet.txt Good luck! Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Hi Anne, What wonderful spirit you have. I'm sure we can all learn alot from you. Coincidentally, you're the 5th person I've met this week who has both GD and MS. One of the monoclonal antibodies used for the treatment of MS is known to trigger GD, so perhaps this is the connection. Best to you, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 In a message dated 3/15/01 11:54:48 AM Central Standard Time, daisyelaine@... writes: Subj: Re: Hello Date: 3/15/01 11:54:48 AM Central Standard Time From: daisyelaine@... Reply-to: hyperthyroidism hyperthyroidism Hi Anne, What wonderful spirit you have. I'm sure we can all learn alot from you. Coincidentally, you're the 5th person I've met this week who has both GD and MS. One of the monoclonal antibodies used for the treatment of MS is known to trigger GD, so perhaps this is the connection. Best to you, Elaine Elaine, I have Graves and no MS..could I get MS? thanks Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 You could, that is, anyone can get MS. But I wouldn't worry about it. It's more likely to first have MS and then Graves', and you've never mentioned any symptoms of MS. The monoclonal treatment used for MS patients causes immune system changes that appear to trigger Graves' disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 HI Elaine, could you please post the publishers name or website for your book? I want to order today but left the info at home, Thanks, Mona - So when do you go on Oprah? Re: Hello You could, that is, anyone can get MS. But I wouldn't worry about it. It's more likely to first have MS and then Graves', and you've never mentioned any symptoms of MS. The monoclonal treatment used for MS patients causes immune system changes that appear to trigger Graves' disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi Mona, It's www.mcfarlandpub.com and the title is Graves' Disease, A Practical Guide , Haven't heard back yet from Oprah yet, but when they call, ha, I'll arrange for this summer. Yow, I went to the dentist Friday, and they decided to check one of my bridge because he thought there might be some decay under the crown. There was so much decay they had to yank the darn thing off. And I have to go to a periodontist for a crown elongation before they can start replacing it. Yuk, my mouth is so sore I've been eating candy to feel better which hasn't helped. So now I'm spraying chloraseptic on it to numb that side. I'll swear this all has to do with the GD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Mona, -- so rub it in - ha,ha! WHERE is the weather so beautiful ? Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi Mona, I'm glad to hear you know what a crown extension or lengthening is. I already had a root canal on that tooth. I only know because they mentioned Friday seeing the hole for it. I remember having root canals done but had no idea on what teeth. Do you recall the crown extension being painful?? I know when they trimmed my gums the last time I was in pain all weekend, and I seem to recall thinking it was the worst pain I ever had. I just want to make sure I have a day or two off afterwords if that's the case. They're going to see how much annual dental money I have left. Even with double insurance, I've probably used most of it already and March isn't even over. If I have, they'll put temps on everything and we'll do the bridge over next January. That would be OK with me because maybe by then they'd be certain all the infection is gone. I somehow think that the original abscess that caused me to lose the tooth and the last two bridges is still lingering. They didn't prescribe antibiotics but I have a stash which I'm using now. That has helped some of the pain. And numbing it with chloraseptic really helped. How this all started: I once had a really bad toothache, and I didn't have time to go to the dentist. So I used clove oil, and boy did it work. The pain was gone and I forgot about the tooth. By the time I went for my regular checkup, the tooth was so abscessed it had to be pulled. Maybe today they would have done more to save it, but at the time they didn't. I remember it hurt really bad at work afterwords and the dentist had me put a tea bag in it to stop the oozing. I don't think I was ever given antibiotics. Anyway, my other bridge is from breaking a tooth while eating a carrot during the height of my Graves' phase. How did things start going awry for you? Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi Elaine....almost time to go home. I know exactly what that is...a crown lengthening. They have to go below the gumline. I have one with a root canal and the crown still fell off (getting extracted) and the one next to it also requires a crown lengthening but they think I should extract it too. I'm having a removable denture on the bottom (to replace empty spot on right side and now it will be balanced on left side). I really don't want to extract the second tooth but often the crown lengthening don't work. Sorry, don't mean to scare you. When my bite is back then I will go back for an implant on both sides. Doing what I have to for now to get my bite back. Do you need a root canal too? It never ends does it? I decided I want the dentist to replace the temporary bridge NOW instead of waiting - I still believe this is the root (no pun intended...hahaha) of my problems. I understand how you feel....my teeth hurt all the time now (probably from the splint). Not much fun eating anymore, probably why I've lost so much weight. Can't wait to get your book. The weather here is beautiful!!! Warm, sunny and windy, perfect weather. Gotta go, hope you feel better. Too bad we don't grow a third of teeth - senior version...hahahha Take care, Mona Re: Hello Hi Mona, It's www.mcfarlandpub.com and the title is Graves' Disease, A Practical Guide , Haven't heard back yet from Oprah yet, but when they call, ha, I'll arrange for this summer. Yow, I went to the dentist Friday, and they decided to check one of my bridge because he thought there might be some decay under the crown. There was so much decay they had to yank the darn thing off. And I have to go to a periodontist for a crown elongation before they can start replacing it. Yuk, my mouth is so sore I've been eating candy to feel better which hasn't helped. So now I'm spraying chloraseptic on it to numb that side. I'll swear this all has to do with the GD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 I, MonaB am on the East coast where we had dry weather and now rains. Glad my name sake, Mona, is in better conditions. Never was so glad to see rain after having water shortages and limitation on usage. MonaB Quote Link to comment Share on other sites More sharing options...
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