ok might get some resistance to this post, but im just sharing my story.
When first i got ill i was sent by my work to bowens therapy, used by occupational health, the therapist got inot it all when her 9 yr old was DX chrons, and nothing they did helped, in her dispair at 15 blood filled stools and screaming pain , she went alternative to a private GP in glasgow, who set up practice alternatively when his son was DX MS.
he found the alternatives beleived that AI was caused by ppl being intolerant to certain foods, E numbers, additives, and candida overgrowth, he got is son on a strict diet, paleolithic diet, and found that untreated it causes leaky gut syndrome, the gut then leaks toxins and other foods especially gluten, that the immune system attacks, gluten is so like the make up of the myelin sheath it attacks both, got him off it all and his son stabilised, he then went onto to help others.
My therapist followed this route and got her daughter stable and leading a normal life.
In my despair at fibromyaliga and SJS, pain 36 symptoms i went online and spent hours getting answers look up sites that gave me info.
I went onto candida diet ( google is your friend) really its dairy free, sugar free,fruit free as it has sugars, aditives and preservative free, red meat free unless you can tolerate it i cant, no peanuts or pistachios , no yeast, no saccharines, , other things that you need to look into or this post will be 3 pages long sorry.google candida diet, the book beating candida by erica white is best ive bought and had recipies, she beat ME after years of suffering.
The similarity between food intolerance and candida to AI was pretty astounding, you ll feel worse in bad cold damp weather, get numbness, tingling, pain, brain fog, fatigue list goes on.
ask yourself did you suffer recurrent thrush , take hormanal contraception, have a lot of antibiotocs before DX ?? its how it gets hold, stress also lets candida spead, why we feel worse when stressed.of if your a man did your partner ?? its sexually transmitable.
3 months ago i went candida diet and gluten free, no easy and very restictive, i then went into what they call die off symptoms, headaches, pain and stiffness in joints went up, brain fog got worse fatigue got worse, was not a nice time, when it settled i got onto supplements to kill it, slowly, i took too many and had to reduce, cinnamon, garlic, caprycillic acid, strong pro biotics, all help kill it.
last 2 weeks , i have had no stiffness, little pain, mouth slightly wetter, eeys still dry but then that may well be damage now, fatigue way less if any some days, post nasal drip gone, brain fog alot less, concentration alot better, fibro gone, tinnitus gone, ithy skin, scalp and crawling sensations under skin ,gone, nausea gone, cold feet almost normal, tingling and numbness gone.breathlessness gone, irritable bladder gone ,white toungue gone, sinuses clear , vaginal thrush, my hair i lost is regrowing symtpoms ihave had on and off for many years gone.insommnia gone, sleeping 7-8 hours undisturbed sleep.but be warned you mood bottoms and you may need anti depressant help with that!!
I now have headaches with the continuing die off, some joint pain if i kill it too fast, last week been walking 4 miles no problem , cleaning whole house, mood lifted, off amytrptyline, reducing pain killers, and feeling about 80% better, ive only knocked it back will take me around 1 yr to 1 1/2 years to kill it off completely, possibly on this diet for life.
Another girl here lotus has done same and is feeling so great, she has reduced planequil and appart from some dryness leading normal life.
I am so well, i am returning to a job i missed dearly and thought id never do again!!!
I have posted past info, but wasnt sure till i got die off out the way what it be left like, now i know!!
The cravings for sugary foods is now gone, though i cant say i dont miss my old diet, but i sure dont miss the fatigue pain and other symptoms.
it can be done!! is it easy ??heck no!! its a case of worse before better, and a few months of what i can only describe as sheer heck, but its paying off and at 37 i cant afford to ignore that, its a no brainer, if i eat things i shouldnt it returns, so its not remission.
i ll post links to the sites i find helpful, you can make your own mind up, but please dont tell me that its not the way to go, for on saturday i went to tai chi day, did 2 hours of it, walked round all the shops with my kids and partner, ran about making dinner, did the ironing, cooked, and felt great, didnt pay next day as i cleaned the whole house next day, by monday i was even better!!!
Now i am not telling ppl what to do im posting to say its working for me, im also on ambrotose that was recommended and thats helped make me feel better, i also take mangosteen juice a powerful anti oxidant to help clear the free radicals that dying canddia cause, though in the Us jus antioxidant drink is available , which is 5 time sbetter, just cant get it here, and vitamin c that helps the die off too.i take threelac to recolonise my bowel and est the canddia, garlic, caprycillic acid, and the strongest candida kiler is a supplement forumula SF722 , be warned dont take it all at once!! start the diet, when the die off settles, which is individual depending how bad its taken hold, then start something to kill it, when that is tolerated, up it, slowly, and work your way up.
each week i get a little better, and am fighting this all the way to get my health and life back, it is working and i m grateful to lotus for the help and support, and the websites that have gave me information.
I just wanted to share my findings and my good news in case someone else gets help from it, i ll still be around the forum, for id have dropped off the edge without you all, but im getting my old self back and candida and fod intolerance can see me in heck !!
why is AI rising each year ?? well i blieve pollution, diet, pre packet foods, busy lifestyle so grabbing convenience foods are all worse than 50 years ago, is the link in families genetic?? or is it fmailes tend to eat the same things and canddia might have been passed on from a parent, , i put mines down to contrception, anti biotics, getting vaginal thrush at 18 and it never realaly going away, i always knew certain food bloated me, i just ignored the fact as i liked eating them so much.
http://www.foodintol.com/food_intolerance/symptoms_of_food_intolerance.htm
http://www.stopyeast.com/candida-symptoms.html
http://www.candidadiet.com/
http://www.ion.ac.uk/archives/063_how_to_beat_candida.html
http://www.candida-society.org/ncs/stories.htm
hope this helps
T x
i have been asked to remove 4th link as it advertised products, didnt know that and sorry for any offence or inconvenience
Wednsday,
I believe and I am with you! I have had enormous success and even got off Imuran 6 months ago. My dietary changes are even a little simpler than yours and it works. No gluten, red meat, high fat foods or chemicals and preservatives. It is hard work but it's worth it. I am able to get quite a bit of exercise now with the energy I have with a better diet. Like you I still have some problems, the eye dryness is bad right now, but I'm still leaps and bounds ahead of where I was.
It was explained to me that the foods are causing the illness but they are prone to causing an immune response, so if you avoid them, your immune system stays calmer.We will always have the disease itself, but we can manage it better by controlling what goes in our body that can cause a reaction. I am now on minocycline instead of imuran, which is not caustic to my liver and kidneys, so that pain hass gone. I'm also glad to be off imuran b/c of a family history of lymphoma, the sjs risk of lymphoma and the increased chance of lymphoma b/c of the imuran itself, I feel good knowing I've removed one risk.
I know I'm a heck of a lot better since I gave up diet pop!
Good on you!
Janna
Missyb
good to know your geting energy and health back, yup i agree this illness isnt going away, its not about curing it, its about managing it, and finding what works for you and what doesnt, its as inividual as SJS i reconn. So glad to hear youve got off a drug and feeling better on the diet, just shows there is a big relationship with food and symtpms, im not saying it is a cure, as much as its a way to beat the daily grind of overwhelming symptoms, but makes me feel go good i have a weapon against this monster and some control over it.
janna ty! yup i recon even small changes have to make a diference, i gave up pop too , all i drink now is herbal teas, 2 liters of water a day with lemon in it for a bit of taste and a carton of coconut milk a day for something different and its good for you, ever little helps :)
T x
Hi Wednesday
So glad you're feeling heaps better. You are very welcome for my help sharing what is working for me. It's so wonderful you'll be returning to work. From my experience it's like you are "living" again instead of "existing". Thanks heaps also for your helpful suggestions. I hadn't thought of coconut milk, will investigate.
I just can't believe how much I've improved using ambrotose complex & other goodies having been very sceptical to begin with. I've reduced plaquenil slowly from 2 to 1/4/dy & I feel just fine. My eyes are really improving thank goodness. They are no longer sore & gritty at work even with the fluorescent lights, air con, computer. However, I'll be needing new lenses as out of focus now!!! Will wait a good while til I see how the old eyes stablize. Mother in Law told me her eyes are improving also with her CFS & she isn't needing her glasses as much. She is 70 yrs old & now able to get stuck into cleaning up house with more energy. I'm no longer chewing gum except for after meals. Like yourself I've heaps of energy driving my hubby crazy. Poor thing he is still suffering with his depression of 30 odd yrs.....trying our best no matter what the cost to help him live a more normal life. Like yourself I'm sleeping 7-8 hrs with a roll over wake up or two. Sounds like you get more exercise than myself sitting in an office all day which may be of help. I thoroughly cleaned the house the other week & actually enjoyed it!! Think I'm going bonkers! lol
Even though I know I'm not "cured" of SS at least I've got things under control so as I don't really think about it much except noticing improvements. It will be interesting to see how I go re dryness now winter is approaching. I've been told it could take 2 yrs to be free of candida, not needing to be so strict diet wise, but can cope with that.
Hope your moving house all goes smoothly & you can get settled before beginning work.
Look forward to hearing how you are doing. Take care.
Lotus1
Lotus
friend of mines i shall never be able to thankyou enough for the time, support and information youve given me!!
I think during the die off of candida phase, id have given up , if i didnt have the focus that it DID work for someone.
yes i feel more like a survivor than a sufferer these days, even my kids are overjoyed, and my son who was stressed to see me so unwell is off the steriod inhaler he was put on as his asthma flared due to worrying about me i think.
I feel like my life is back and getting better daily, its an empowering feeling!!
yes all the articles ive read seem to point to around the 2 years mark for erradicating canddia if its as far gone as AI issues, but fibro went and fast!!
The coconut milk is sugar free, natural and full of essential amino acids, not canddia killing, but not candida feeding, and its refreshing if out the refridgerator.
I also started taking bee pollen which kills canddia and leaves the good bacterium alone, its called the ultimate health food ,packed with enzymes, vitamins and amnio acids, one teaspoon a day, added that to my regime now.
yesterday i took no painkillers at all and had a great day, this morning i woke up same, and the kids were off school and i kept up with them all day, theyre calling me the health food queen lololol.
thnakyou again, i doubt id not have fought my way through die off, if i didnt have the inspiration someone was doing this also, and all the info on ambrotose and phyt-aloe etc, god if feels so good to take charge of this monster and be winning!!
T x
Yes, I too have found relief in a mystical tonic that has eased my pain and put me in a more mellow mood. My grandmother used it and lived to be 96 years old and in very good shape physically and mentally, until her death.
I started out with 2 oz. in the morning and increase the dosage to twice a day and now three times a day and wondering if I should go to four.
This tonic goes all the way back to the vikings and cured everything that ailed them. I have it imported from Allborg, Denmark, it's called Akvavit or Water of Life. I think it even helped cure my cancer, anyway it taste pretty good and it's good for you, what's not to like.
Aw Wednesday, that's what we're all here for. I can't be selfish & not share what has benefited me, especially if someone is interested. I'm so overjoyed hearing how much you've improved. As you know I'm extremely pleased with my results from using ambrotose complex etc since last July. Now your children can see you are much better health wise they probably won't be worried about you & will be happier also.
Take care.
Lotus1
epson
so glad to hear that!! its amazing the difference something like Akvavit can make , i ll be looking into ty!
Lotus :D
T x
ok i am so confused could u explain to me a little more about this, and how would you do this with a 4 year old
Everyone, please be sure to talk to your doctor before adding anything alternative or any supplements to your diet. Jonnel, you have to be especially careful what you give to a small child. The alcohol content in Akvavit is not exactly what you would want for her.
There is no "cure all" and some of us have some other serious issues besides Sjogren's so we have to know what will also affect those issues. Some find that cutting down on sugar or gluten, things like that can help them feel better. Some foods just don't agree with us, so that makes sense.
Maybe I am too cautious, but I believe I have to be. My body can't afford for anything else to go wrong. Good luck.
quiger
quiger thank you very much I was just confused. As a parent all ideas sound good when they can make your child feel better. Jenna is on plaquinil and is having some stomach issues. Thank You Hugs and Kissess Jonnell and Jenna
I know I have been wonderign what I can try diet wise to help me feel better. I have been thinnking on cutting back on most sugars. Everythign i have been reading lately seems to indicat that sugar is not so good for us. But I do plan on eating a piece of fruit a day. There is just so many nutrents i beleive are in fruits that we need. I know some fruits have a higher sugar content than others and will use them the most.
I think it may be a hunt and try sort of thing to see what type of diet makes me feel my best. All I know is I have nothign to loose other than a few pounds to try diffrent ways of eating.
So Wednesday, did you keep a food diary while doing this???
Kimi
Sorry about all the misspelled words and typos in my last post, hit the wrong button! LOL Kimi
Thanks, Quiger, for the reminder that we can't just take whatever sounds good. We all want the "magic" diet, vitamins, supplements and so forth. You would be surprised at the number of dry eye cures I've heard of over the last 10 years. Oh, I won't go there. Lucy
quiger
very true, but i did say clearly i am purely posting my findings and whats worked for me and not telling others what they should do. " i ll post links to the sites i find helpful, you can make your own mind up" i never said do it is said this is my findings , make your own mind up as to what ive posted.
jonnell what alternative practitioners beleive is that food intolerances and/or candida ( thrush) overgrowth leads to what is called leaky gut theory, the gut becomes inflammed, and causes it to leak toxins into the system that the immune system goes into over drive trying to deal with, you ll get more into on leaky gut theory and candida diet through google, since there is so many school of thought , i shall leave it at that.google leaky gut syndrome, food intolerance symptoms, candida overgrowth symptoms. if anyone does wish to try this speak to their doctors.
kimi indeed alot of fruits are high sugar, natural, but encourage candida growth, for me i cant have them right now, but each person is different, once die off settled, yes i now keep a food diary of what doesnt agree with me, for me its simple, as im pain free mostly, if i eat something that doesnt agree within an hour i feel fatigued again, and within 3 the pain comes back, so its easy for me to know what triggers me, they say that once candida leaves you, the intolerances settle, but it would be a case of slowly re-adding things at that point and seeing if there is a reaction or not.
eyeamdry true there are alot of things out there, and im not promoting anything,not like i get a share in their profits , just sharing my experiences, yes we could all debate this till dawn, but ive gone from being almost sofa bound, to going back to work, enough evidence for me.
I am saying each to their own, i just thought that the information thats taken me 3 months research on google, and 3 months hard work to get where i am, might help someone else.
if thats causing offence, then thats fine, there will be no more posting on the subject, since for me convention was offering symptomatic releif and a life of progession, only, i went alternative and for me have reaped benefits, obviously speak to your doctor, , but so far convention has not given me what diet control has, im leading an almost normal life, and with 2 young sons , i am entitled to try what it takes to get my life back, and i am getting my life back.
Sure if convention had given me all this that would be great, but i have the support of my occupational health consultant, my GP,who have looked at my diet and said im eating better than them and more nutrients than them, its and im quite sure when i see my rheumy again, she wont be saying dont do what seems to be keeping me from pain and symptoms.also bear in mind all the supplements i take like garlic, and caprycillic acid are derived from nature and not liver toxic, ambrotrose is derived from plants , everything i take comes from nature, we know steroids, immuno suppressants and planequil long term have their price, or can have , garlic doesnt.caprycillic acid doesnt, and ambrotose is plants sugars, that dont feed candida. threelac is just a strong mix of good bacterium thats known to recolonise the bowel with good bacteria, which even doctors recommend them for IBS, its now in yogurts, and many products as they know it helps.
we know that E number and additves are not good for us, we know red meat is not as good for us, and its known fact that gluten isnt in many ppl either. thats fact.
I supplement my diet with bee pollen which has every nutrient known to man in it and all natural superfood,spirullina another superfood rich in vitamins ,minerals and iron , pulses, juicing vegetables, eating more raw and steamed veg, natural bio yogurt, eggs, fish, lean meats, nuts which are vitamin b and selenium rich, millet, brown rice, tomatoe passata for sauces,humous , rice cakes, homemade soups , cottage cheese .and ive seen my life of 36 symptoms and incapacitating pain and fatigue transform into a life of getting better daily, if that isnt evidence enough for me that i have a way to control my ill health then what is ?? can any doctor argue with that as opposed to fries , fat laiden cheese, E numbers, additives , microwave meals , gluten, sugar,and take away food ?? we at least know cholesterol and heart disease is link to these things.3 months ago i couldnt have swallowed these without water, and sometimes choking, my voice was hoarse and weak , not today .
yesterday my mouth was running saliva, 2 weeks ago it was dry as a stick, daily i see improvement, the GP in glasgow who went down this road with his son with MS set up practice to help inform and advise others, as he has seen his son living a normal life for 5 years, when convention failed him, those who have changed their diet have seen improvement. sure its not easy when you crave a big slice of cream cake, but pain is a terrible consequence for me .
speak to your GP and ologits , certainly!!! i did and was told if its working for you, and your making sure your nutrients are being covered go for it, and i am.when my maxillo facial surgoen ws examining me for my dry mouth he said yes but candida can dry your mouth too, candida just kept comming up.
time and time gain here i read recurring thrush issues that predated DX, treatment after treatment not working , except temporarily, i put two and two together, with help from my alternative therapists, and information from others who have seen massive improvements in changing diet, as a nurse myself seemed obvious to try it and i did and its payin off daily , but each to their own .id also like to add two warts i have had for 3 years have disappeared, and the skin tags on my back are gone also, as caprycillic acid is anti viral as well as anti fungal , and found naturally in coconuts .My skin is shining , my hair regrowing and the dark circles under my eyes ive had for many years are gone years gone.yesterday i used eye drops twice instead of 6 times .
T x
I just wanted to add something. i have tried it all too.. and yes the diet works great.. but i found that after awhile the restrictive nature and the amount of effort it took to keep up on the diet got to me and I gave in.. and then went nuts on the sugar.. sugar is my drug really.
I also had huge releif from giving up diet pop.. that has been no problem to keep up.
good luck and I am glad that you feel better...
Kelene
thanks for posting this, yes it aint easy when youve ahd a life of other foods, i know i still crave sugar at times , possibly always will , but at 37 , cant work, cant run about with my sons who are my life, watching them suffer seeing mum ill, i just use that as my motivation, id give up my life to save my kids if it was nessesary, but certainly id give up sugar for them.
if i feel like giving up i look at my sons 9& 13 and think you deserve more than me being a quitter, i guess if i was older it might be different , but me not working would mean financial worry if they wanted to to go university , or needed new things, and no amount of craving is worth not giving my very best to them, so it keeps me on straight and narrow, i just cant in good conscience say we cant aford for you to go to university, mummy wants to eat what she cant have, i ll eat what it takes to get me well enough to give them the life and support they need from me.i was a single mum for a few years, and in a way im the one stable thing theyve ha din their lives, why my health being what it has been has scared them so much, killed me to see it, but now i know there is a way from me to do something abou that, then i ll stick to the diet like glue to save them that pain .
kelene thatkyou for your good wishes they mean alot
T x
Wednesday, I'm so glad you've found something that worked so well for you, but it's the very nature of this insidious illness that what works well for one does nothing for the next person. I appreciate any and all suggestions of things to try, in case that one, or a combination of a bunch of them, is my "magic bullet".
I'm probably one of the very few Sjoggies who isn't troubled by yeast...had one yeast infection many many years ago, easily treated and cured. I've never even had issues when taking antibiotics, and I've taken my share (and those of several other people, it feels like).
I've tried exclusionary diets over the years, from gluten free, to vegetarian, to all natural, macrobiotic, organic or the "100 mile challenge"; I was tested using both conventional allergy testing and NAET (Nambudripad's Allergy Elimination Techniques), and altough a few things showed positive, and I was appropriately treated, I had no relief from the basic symptoms of SjS or other AIs. I do, however, feel that these techniques have brought me to the best level of my general health that I have ever been, leaving me in an optimal position to deal with the AI issues.
I wish it was as simple as someone finding the one true cure, and all of us benefiting, but I'm afraid that isn't so...but all suggestions are welcome, and may work for someone else! Just let your doctor know what path you are following (partly so they know of any potential interactions, and partly so they don't take credit for improvement that's due to another treatment ;) )
W said "bee pollen which has every nutrient known to man in it and all natural super food, spirullina "
I have used these for myself and my dog who has an autoimmune disorder too! (LOL, Must run in the family! LOL.) I feel so much better when I do take them but for some reason I am one of those who does it for a while and then goes back to the old ways. Often for us it is an issue of lack of $$$ to get them.
I read a book once that stated that "Food is Medcine". I find that statement very interesting. I figure each of us will try different diets and hopefully will hit on one that helps us. I do believe we each will try things and find what does or does not work well for us. It is a strange path we are walking here and none of us are on the same road. SJS I am finding is diffrent for each person who is afflicted with it. We all have our own path to walk.
I read a study once on sugar. In the study they used several rats that they had that were addicted to cocaine and placed them with several rats that were not addicted. In the water bottles in their cage they placed one with water laced with cocaine and one with sugar water. In the beginning the rats all tasted of both waters and the cocaine rats went to that bottle mostly, the others went to the sugar water bottles. After a while though the addicted rats started to go more often to the sugar water bottles. After a longer period of time all the rats were using the sugar water and left the cocaine water alone!!! They came to the conclusion that sugar is more addictive then cocaine! I really thought that was an amazing study.
I know my mom always says she is addicted to chocolate chip cookies, she is not not joking about it. Every day she had to have them or she actually felt shaky! She has now gotten to the point of not having to have them every day and can still enjoy them on occasion but when she has them it is a fight to stay away from her old habit. For her she said it was harder than stopping smoking!
I don't mean to start something here, I just find these things interesting and wanted to share them! Personally I am just waiting for the garden to start producing so we can eat all the fresh wonderful veggies to our hearts desire!!! Oh how I love snap peas eaten right in the garden! They never do make it into the house! Last summer my then 3 year old grandson ate a whole row of beans LOL. He loves beans. When he was in the store the other say with mum, he snitched a bean out of the bin and ate it, then he told his mum, "This don't taste like Nanna's"!!! Oh how I love the garden!
Kimi
Linda
how true!! and thanks for the post, really its seems that pppl have had success from the removal of their tooth fillings from heavy metal ones to non heavy metal ones, to quite a few things, and i agree what works for one person isnt a cure all, just one person happening upon what does and doesnt work for them, its a process of elimination, and snakes and ladders methinks.
Its not easy, finding whats right and wrong for you, what works and what doesnt, but now im at stage i can tell what isnt, in a way im lucky to feel rotten so quickly when i have somethign that doesnt, and can mark that down on my list of what not to have.
Even agree that some ppl it might be environmental factors, pllution, chemicals in their area, its strange what AI sufferers can be suceptible to, but for me im just really grateful that something is working and im getting there, as you say working out what does and doesnt lead you to the best optimal health for you personally, i just wanted to post what is working for me, in the hope that it may help someone out there whose problem is same as mines.
Kimi
thats for that, yup money is a major factor for so many ppl, im truly lucky i can afford these things, and count myself so daily!
I have found by googling the cheapest prices i can find for these things in the UK, spirullina is recommended by almost every nutritionist ive read about, and bee pollen is amazingly good for you, though id build that up slowly incase of ppl sensitive to pollen, i never was.
between the two of them it covers every nutrient we need really, from iron, to enzymes to vitamins, its said that if you were stande don a dessert island and all you had to eat was bee pollen it would cover every nutrient you need by itself, its the most complete frrd on each they say, and ive searched many sites for info on this.
i read food is medecine and it was a great read, and very thought provoking.
I can well beleive that chocolate chip cookies could be harder than cigarrettes, i know pizzza was my favorite thing on earth, saying that it was yeast laiden between the cheese and the dough, and gluten laiden and they say you crave most what you shouldnt have lolol
I can agree the cravings i have had for sugar are terrible, its horrendous at first wanting what you cant have, but im finding as time passses it miss it less and less, but i dont miss the pain, no painkillers they gave me did anything much for the pain and fatigue was truly flooring, now im up at 8 am and in bed at 11 -12 mn, though during die off i couldnt sleep at all more than 4 hours, ask anyone who seen me in chat at 3 am my time lol.
Now im at stage of pin pointing what makes me feel ill, and thats great, i then can avoid it and my list of what i can eat, isnt so bad, its not like my diet is rubbish, far from it , its vitmamin loaded, and its not like im not getign enough fibre, for my bowel move daily and normally, which after 19 years of IBS, is quite something, pulses and rice cakes seem to be enough, if i thought it wasnt i could always add pyssilum husk to my diet to bulk my fibre intake up, but i have ben really careful that ever nutritional need is met, i do have to take vitamin C tablet form just to make sure im gettign enough as i am not eating citrus, ecept lemons.
thankyou all for your expereinces , each post helps to know that something worked for someone , and i truly wish everyone the best at findign that their recipie for success is!!
and when i move house my intentiion is to grow my own organic veg, i grow my own herbs right now in potsm which i love taking rom the grden and eating, but havent got apoce for the veg right now :( its one of the things im most looking forward to, as i used to garden alot and will eb able to do so in a bigger garden :)
T x
T, I'm confused. Are you saying that you don't have sjogrens, but do have candida sensitivity which causes symptoms similar to SS? Or that having candida sensitivity makes SS symptoms worse?
You said you are off the amatriptyline? Are you hoping not to start Plaquenil now too? And do you still think you will have the lip biopsy if the saliva issues are better?
Sorry for so many questions but trying to understand it all. It's brilliant to hear you are feeling so much better! Enjoy bank holiday Monday with your boys XX Ailsa
Mc T,
I'm glad you are feeling better and can return to your job that you love. :)
Best wishes to you.
Bucky
Bucky aww thanks honey, yeah its a big thing returning to work, i really miss it x
harrigan i will still be going for the lip biopsy, im not saying it isnt SJS, lotus is confirm DX SJS and has revered most symptoms this way, other AI sufferers have got themselves stabilised or as good as they can get themselves through dietary changes, what in my might be causing my immune system to go haywire is what i eat and candida.
As for planequil, well i shall speak to rheumy about that, hopefully she could monitor me, and see me and check my bloods, so that way if day comes that i needed it , id still be on her list. Right now though i am seeing enough improvement as to say that id not be neding it right now.
I ll take my life with all this a day at a time, but yes im off amytryptyline as im sleeping just fine, and not expereincing the never pain.
My bowens therapist has her daughter off steroids and avoided need for colostomy, but yes she is dx chrones .
I just felt that convention wasnt giving me much hope, and spent alot of time researching other ways, for myself, and now i am seeing improvement, im sharing that information with others here.
AS linda says what works for me might not be someone esles magic bullet, i wasnt convinced when i started it all, but it made me feel better to be trying every option avaiable to me, but its paying off.
There were just so many articles by narutopaths and alternative therapists saying untreated intolerances and candida can lead to AI, i thought well if i dont try id always be sitting thinking what if ??, im glad i did try.
The book i read how to beat canddia was written by a ME?CFS sufferer who beat it after 10 years of suffering this way, but i cant claim its cutative, sure SJS will always be there, its about managing it , do i think i have SJS yes i do, my rheumy thinks so, as well. I might well be on this diet for life, but if that means i get quality of life back ?? well so be it, thats what i shall do
T x
more info on leaky gut--
http://www.leakygut.co.uk/symptoms.htm
http://en.wikipedia.org/wiki/Leaky_gut
http://www.leakygut.co.uk/Candidiasis.htm
http://health-care-aus.org/leaky%20gut.htm
T x
Wednesday,
I haven't read these links yet, I'm wondering if any of them explain how you know if you have candida. How did you find out you had the infestation?
I'm really wondering about this....
Janna
I wish you guys could get in a study to document your successes and maybe learn correlations for this disease. I know you do, but just remember to tell all this to all your doctors!
janna
i have had vaginal yeast infections on and off for many years now, ans just from looking at the symtpoms it could cause, i went on the diet , as a see if it helps kind of thing, when i statrted epreincing die off symptoms it became obvious it was at least one of the factors, reading many sites that linked fibro with yeast, i more went on it to help the fibro, and then found agter 3 months , its helping my SJS symptoms too, fact that lotus had been so greatly helped, encouraged me to keep pushing through the die off, basically when yeast is killed off it releases toxins and you go though a worse before better stage.
I wasnt DX with yeast, i just took aleap of faith if you will, since so many of my symptoms , were so simliar, one girl here`s rheumy reconned her brain fog was candidiasis, and since alomst weekly someone posts here about canddia in one place or another, i thought well it cant do any harm to try.
I guess its a trial and error thing, but its wroked for me
T x
Thanks, honey.
Hi T
such an interesting post and so very very true - I went to a food allergy man many years ago and it was him that told me about Candida and how it can even get into your brain! Scared the life out of me - but like many on here I am weak willed:((( I start with great enthusiasm - feel great and then slowly slip into the old ways <sob> however I can honestly say I have never felt so bad and I feel I am partly to blame for the rubbish I feed my body sometimes (am a confessed chocoholic :-[) and the old saying comes to mind `heal thyself' - especially after you have had numerous tests and all are negative but you feel like **** and think `but there IS something wrong - normal people don't feel like this:(
I feel loads better just cutting out yeast products /chocolate/cookies and cakes. I grow a lot of my own veg but also eat a healthy diet now - what is my other option?? Pain? - we just gotta give it a go it really makes sense.
Issey
Hi everyone
I've been thinking a lot about how to reply to these posts. I'm thrilled for Wednesday McH and Lotus - it's wonderful that they are feeling so much better. The Candida diet takes a lot of dedication and hard work, but when it works it works.
However .... I'm worried that we're confusing taking responsibility for our health and blaming ourselves. The 'western' diet is over-reliant on wheat, sugar and dairy, as well as all sorts of processed foods and 'empty' calories. We all know it would do us good to increase the amount of fresh food, vegetables and fruit that we eat and reduce the amount of 'rubbish'. Our body weight would stabilise at a healthier point - although not all of us would be thin! - and we'd be best placed to deal with other health issues. But many of us would still be ill.
I hope the Candida diet works for lots of us but if it doesn't, or if it doesn't seem appropriate to you, then please don't feel that somehow you've failed. Like Linda and many of us here, I've tried exclusion diets (including the Candida diet) but yeast and general food allergies don't seem to be my problem. I eat as healthily as I can plus a little 'treat' every so often - life is hard enough for me without chocolate!
Love to all - Chickpea
issey
good to know you feel better cutting out things and eating better, exactly what i think my alternative is fatigue, brain fog and pain, and i love food,pasta and pizza my biggest loves of my life in food, and yes i miss my italian cooking, miss 4 chesse penne and lasagne and homemade pizzas, but i do not miss the pain i was in , nothing they gave me touched it, cooking is one of my biggest hobbies, but if it means eating different things to get some quality of life then i have no other option, today im craving cheese again and pasta, and yup a big bar of 70% cocoa chocolate, but the price id pay is 3 days of pain and fatigue, and it just puts me right off, i ll have my chicken and steamed veg instead lol
Chana
honey i understand that its causing conroversy, and for that im not happy, but if i sat and said nothign and someone might have been helped, then id feel worse.
i totally agree, but if i had tried and it meant no improvment i wouldnt have felt i had failed id have thougth well at least i tired and moved on, its not for me about even success, its about getting the best health and least symptoms i can achieve, doesnt mean im a winner, just darn lucky to have got results, and for that i am truly thnakful, to be able to do things again without the dread of paying back the next day is something wonderful, but to know that it doesnt work for all does make me sad , i wish everyone the best in their journey and if i could find everyones formula for improvement i would gladly research from them, all i can do it share my expereinces, if it helps one other person, then id be happy, if it doesnt well, thats fine too, but it would be selfish of me to sit here feeling better and not sharing my information, for fear of scorn or resistance, i tried my luck and it payed off, if it hadnt well id have tried something else, but that my way , my nature, to push boundaries and search for facts, if by the end id have gotten nowhere id have lost nothing really, but way i seen it i had nothing to lsoe by trying and it made me feel better to try, but i lost alot of faith in 30 years of symptoms and no doctor taking be seriously or the catch all DX virus go home, that it led me to go alternative, and for that im glad, or id have still been sitting here much iller than i am today.
if a rheumy had put me on this diet , would that have been different ?? , but since i did the research myself does that make it any less so ? all i was offered was go home take the meds and get your head round progression and i ll health, but im a stubborn wee person, and i dont give into things easily, my mother always said i was way too stubborn, now she said last week, thank god you are or youd not be getting better, if i set my mind to do something, very little deters me from it, and not even cravings will
T x
I don't think you need fear meeting with scorn or resistance on here T - everybody is very open to new ideas and understanding that what works and doesn't is very individual. Also, I think there are times in our lives when we feel strong and positive and ready to try out things, and others when we just need to hunker down and let things go.
At the moment I don't feel I can face gritting my teeth and battling with anything else. I hope it's not lack of will power, or lack of desire to be better for my family or not being stubborn enough to get better.
Anyway, have you got your return to work date yet? I'm really pleased you feel so much better and can look forward to getting back to your job - I'm sure you have been greatly missed and a lot of people will be glad to have you back for a cuppa and a natter, as well as for your nursing care! Good luck and let us know how you get on XX Ailsa
Well I think you are an inspiration and you have given me the will power to go at it again and try and make it work. I have had the worse weekend ever of pain - the painkillers given to me made me sick and that is something I hate so no meds and soooo much pain -a weekend lost to this horrible condition :'(
I have 6 furkids who depend on me - if I am ill there is no one to care for them - so i owe it to them if not to myself to try and `heal myself'
Will you let me have a list of the no go foods please and any diet links.
Issey x
Wednesday...You're awesome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ;D
harrigan
i can fully understand that, my posts were for ppl information only, and im not sitting in judgement of anyone honey, just sharing my views.
i return to work i think my sick line ends, in 2 weeks, time, i ll phone nearer the time as i do night shifts, i ll phone to see where theyve slotted me in, have annual leaves to fit in from last year, so will have one a/l night a week for 5 weeks, to slot me in gently , so i ll be back there in 2 weeks time :) , i think a few of the patients will have missed me, many sadly will have passed away, and most of the staff will be glad to see me back, except the ones who dont really care about the patients, they wont like me back to pull them up lolol too bad! x
Issey well least you knpow in the past it helped you, i sure can relate to the lost weekends to this illness, i have 3 furkids too :) 3 cats who i adore, sometimes better than kids, they dont talk back lol
i` ll post some links
http://www.candidadiet.com/treatment/treatment_diet.shtml
http://altmedicine.about.com/od/popularhealthdiets/a/candida_foods1.htm
http://www.annecollins.com/foods-for-candida-diet.htm
http://www.complemed.co.uk/patientguides/anti-candida-diet-menus.htm
There are many websites, but i cant post them as they have products adverts on them, what i did was google, read through quite a few, and make a list of food that aint allowed, many say take gluten, but for me i know i swell up and feel worse, so me personally,. i had to cut that out too, i also looke don ebau for second hand recipe books, and picked a few up quite cheaply, but as i say alot of info on google, but some of the better ones i just cant post.
issey hope it helps, good luck, and wish you all the best in it, i truly do, let me know how your getting on or if there is any help you need x
gsmraxe lolololol erm im not that awesome lol but thankyou :) x