I made the decision to beat Lupus

I made the decision to beat Lupus

I'm Allyson, I'm 48 yrs old and I was first diagnosed with Lupus in 2004.

When the doctor told me I had Lupus I basically shrugged my shoulders and he said to me "do you understand you are going to be a very sick girl?" I walked out of the room and I was so angry at him telling me I was going to be very sick!

Anyway, in January this year I went to the doctor because my thumb joint was killing me and he asked if I had any other joint pain. I said yes in my elbows when I wash my hair. He then sent me for blood tests and yes it was Lupus.

I then started sourcing information on Lupus and ways to beat it.

In Feb 2013 I came across some info about a water technique which I have been doing everyday since.

In March I saw a screening of FoodMatters.tv and this short documentary changed my life. I decided there and then that I had nothing to lose by trying to beat Lupus the natural way without drugs.

My eating habits have totally changed, I now eat 80% raw foods and so far the results have been incredible. The joint pain in my thumb and elbows has gone totally. I still have lower back pain (which I never even knew was related to my Lupus till very recently).

At the beginning of June I decided I needed to also get rid of all toxins in my house so I sourced a company where I could get safe products to replace everything in my household. The bonus being that this company has everything from toothpaste to shampoo to skin care to car care to cleaning products and it's all delivered to my house and it works out cheaper! I now have nothing at all with nasty chemicals in my home. I'm now in a totally clean environment inside and out!

My results so far this year are:

No more thumb and elbow pain

A loss of 11kgs in weight (this is awesome!)

Perfectly flawless skin (first time in over 30 years)

More energy than ever before

My next step is a mixture of natural supplements for my lower back pain. I will be starting on those within the next few days and I will update my progress as I go.

I will never give in to Lupus and I do believe that every disease is reversible but you have to make the decision to beat it, and that's what I have done with changing my inside and outside health.

64 Replies

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  • Unfortunately not everyone is as " lucky ad you

    " there are different degrees of lupus , no two cases are the same. Jade you consideredmaybr yours us light and different degree than the rest . Different approach he's work different ways for different people. Some of us have tried many many different approaches including yours and it doesn't work

    Wish it was as easy as that

    David

  • I'm left wondering if cynicism is a symptom of lupus, or indeed a side effect of medicine as I simply find this unbelievable!

    As Davidj comments there are different degrees of lupus and differing approaches work for individuals - the post above however sounds like a commercial to me and I'm waiting for the 'pop up' trying to sell me something.

    If this is a legitimate reporting of a success story then I wish you all the best, I for one do not believe that 'every disease is reversible' and whilst I accept the power of the mind is a major factor in coping with illnesses it is not the only factor,especially when considering how SLE patients are faced with debilitating illness and in many cases the critical outcomes of organ involvement.

    Furthermore, without trying to minimise the pain involved with thumb pain and a painful elbow when washing hair many, many SLE patients face chronic symptoms daily that are totally debilitating and struggle to manage agonising pain, this illness changes peoples lives and affects not only the patient but their families and friends and ultimately their career.

    I am one of the many people who changed their diets and lifestyle in an effort to minimise the overwhelming symptoms and whilst I will always concur that a healthy diet and lifestyle is advantageous, alone it is not enough for the majority of patients who are unable to control the symptoms of SLE.

    Slowmo

  • Totally agree with Slowmo on this. I too am trying to following a diet for inflammatory arthritis ALONGSIDE my meds (methotrexate and placquenil), physio, and mild exercise (swimming) and walking when able. Whilst the products you mentioned may heal your thumb/joint pain.....it will be the DMARDs that stop it going to organs in the long term. That's why years ago mortality was more with lupus whereas now it can be managed. I think diet plays its part very definitely.....however, none of us have gone on these heavy meds lightly. I'm glad it works for you Suncoast but if it was as easy as that there would be no need for us to visit rheumatologists.

  • I thought this was a place for support for Lupus? I am simply sharing my story, my beliefs and my results thus far. I am not changing my diet for a few months to see what the results are, I am changing what I eat forever, after all I ate processed foods and was exposed to toxic chemicals for nearly 48 yrs so I don't expect to reverse my condition in a matter of months but I do believe I can alleviate the symptoms or at least the severity of the symptoms within 12 months. Even if after doing all this I have no relief in 12 mths, I would still stick to what I am now eating as I have never felt better in my life. And that is not an advertisement!

    Very disappointing to be thrown back negative comments when all I wanted to do was share my story and if in anyway it helped someone out I would be grateful, but obviously this site is not what I thought it was. Negativity breeds disease.

  • Hello there its great to know you found a formula that can work entirely for you and you have tried it and noticed results. Then what can I say apart from brilliant, again some cases of lupus vary in moderation some are severe and some aren't. Don't worry what others are saying that's opinions sought out because its hard to believe. More or less I would say your lupus will always be there but to the fact its controlled without the use of meds to support it, which in itself is great im not going to say I wont try it in the future (am still on meds right now) it would be great to be rid of it but that wont happen anytime soon thanks for sharing your post

    Danielle :-) x

  • I think its great that it is working for you Suncoast - and it definitely has its place in helping but unfortunately for a lot of us it has to be alongside conventional meds. It is always worth sharing ideas though as it gives us food for thought (not literally) and gives us a nudge about what we put into our body is important. I hope you stay well. x

  • Food is the most powerful medicine there is.

    The above is not an advert, but a very informative video on the Gut Flora

  • Hi, I am happy that you have found something that you believe is helping your lupus. I do belive that a positive attitude and lifetyle can help to manage the disease. I do think it is such a complex disease, affecting people in such different ways and severity. I really don't think it is as simple as deciding to beat it. I remember a well known person with lupus (I just can't remember their name!) Who came out and said they had lupus and were beating it with diet, and being so dissapointed because it felt to me as someone who has suffered quite a bit that they were saying that lupus was not a potentially lifethreatening and severe disease in many cases, and that if only people with it ate better and excersiced they would be all fixed. And I think that doesn't help with lupus awareness, which is pretty poor really. I also remember being told by someone that they could sell me a product which would cure lupus, there are a lot of quacks out there! I wish you well x

  • Good luck suncoast. x

  • Dear Suncoast, while it is fantastic that you feel so good and that your raw food diet appears to be working, there are other explanations - one of which is that lupus is a relapse and remit condition. At the beginning many of us have very mild lupus and it appears to go away on its own, only to resurface a few years later with renewed force. And of course, it may be that your lupus was very mild to begin with and didn't need drug treatment.

    Or - have you considered the possibility that you had a wrong diagnosis to begin with? The fact that you write: " I went to the doctor because my thumb joint was killing me and he asked if I had any other joint pain. I said yes in my elbows when I wash my hair. He then sent me for blood tests and yes it was Lupus." makes me think it may not even be lupus - because the typical diagnosis is very different and much more drawn out and protracted - as there is not a single blood test that cries 'Lupus!'

    Of course, diet is very important, whether you are well or sick - as is a positive attitude - but I fear that a few months is far to soon to be declaiming that you have 'beaten lupus'.

    So while I wish you all the best in the medium and long term, I'd just like to add a few words of caution. Lupus seems to be part genetic and part environmental - and it is an ever morphing condition. What works now might not work next year - and however much you wish to, you cannot change your genes. Sorry if this sounds negative - but I believe (after trying many alternative treatments over the last 9 years) that it is realistic.

    Good Luck.

  • Did you try a 100% raw food diet? If so for how long?

  • PS: - as for this being a site for lupus support, maybe you should consider how your story makes some people feel.

    People DON'T feel supported when they are told that they are doing it all wrong, and that if they just did it your way they too could be like you. They feel attacked and belittled. You come across as self satisfied, and a bit smug: "look at me, I'm doing it right, not like all of you"... so I am not surprised if some people react in a way that you were not expecting.

  • There is no need to be nasty Maggie. I obviously am on the wrong site. I wish everyone all the best. I shared my experience and if you read right through my post you'll see I was diagnosed firstly in 2004 and then again in 2013, I would hope the the diagnosis was wrong too! Anyway, you have made me feel absolutely rotten for sharing my experience so I won't be back on this site any time soon.

  • Your post was very inspiring to me and I did not interpret it as you belittling, disregarding or being inconsiderate. I thought you were sharing a joyous & triumphant defeat of a disease. However, we all have different perspectives which are a result of our own individual experiences. Negativity does breed dis ease, resentment and discontentment as you can see from some of the responses you were given. When these emotions are nurtured they can give birth to fear, anguish and anger may appear. 

    I hope that you don't take any of the verbal attacks or being misunderstood personally and know that if your post only encouraged me that humility is key. Love & maturity can empower us to be understanding & respectful towards others with whom we disagree. We may not agree but respect is key. 

    The change of diet and positive affirmations has worked for me also and organic turmeric tea with unpasteurized honey defeated the pain completely. I agree that this forum is not a good place for your post however your post was good for me🙂 A blog of your own could uplift and inspire others who can relate to your experience, might lessen the risk of others being offended. I can relate to you and appreciate you sharing the truth about your experience, yet am compassionate towards others who are not as fortunate. 

    I don't see how an exchange of negative words or energy produces anything positive for anybody but I am great full for our right to freely speak. May Love, Light, Healing, Peace & Prosperity continue to accompany you on your journey💖

  • Hi suncoast,

    I do agree it is amazing that you have changed your life style in such a positive way and that can only be for the good. Hopefully things will continue to improve for you. :-)

    I am 44yrs old and this time last year I was a size 8, fitness fanatic capable of 4hr zumbathons raising money for charities. working hard in a job I loved and had had for 25yrs, and looking after my beautiful family, everyone knew me as the happiest girl around with the never ending smile! :-)

    In less than 12 months I have gone from my amazingly happy, fit and wonderous life style, to now not even being able to climb a flight of stairs unaided, having to give up my veterinary Head nursing job, as I no longer have the use in my hands or feet, and having trouble keeping up with family life. Steroids and the inability to continue much exercise, let alone zumba, have added a few pounds so I am very careful about what I eat. Whilst I don't want to put a downer on your very positive outlook I have to add that there is no way that I would be able to beat this dreadfully debilitating disease with just a change of diet, products and mental outlook. :-(

    I have far more bad days than I have good and the worst ones are what I call my "Sledgehammer days" when I feel as though I have been chased for 24hrs by a madman swinging a sledge hammer and hitting me, very very hard, somewhere on my my body, every few minutes. You never know where he is going to hit you but all you know is he will hit you and you have to keep running, getting more and more fatigued as you go.

    My diagnosis has taken a relatively short time compared to some but still a couple of years living the unknown "in limbo land".

    Maybe your GP has an amazing experience with Lupus but personally I have seen rheumys and neurologists etc etc and still has taken months and months of endless appts for bloods, ultrasounds, x-rays, EMGs, MRIs, more bloods....so I wonder whether maybe you should go back and just check he has got your diagnosis right?

    I truly hope you are able to maintain you relatively good health and your pain remains just in your thumbs and elbow and above all else, keep smiling :-)

    Sparkle247

  • Sparkle - you sound a lot like I was during my first sudden onset flare. I was swimming 80 lengths 5 times a week, single parenting, doing 3 demanding jobs, building kitchens, patios, shelves etc in my 'spare' time... and overnight I was reduced to crawling upstairs, unable to bend to sit on the loo without screaming in pain, barely able to drive or use my hands in any way at all. I tried to keep swimming but 10 slow tortuous lengths would exhaust me and be all the activity I could do in a day. I'm happy to say things are much better than that now - and although it has been a roller coaster of an illness, it is possible to climb out of that hole. I initially believed I could beat it with diet and lifestyle changes - but two years on it hit me even harder. Since submitting to conventional drugs I can at least function again - even if I will never be the person I used to be.

    Take care and take heart - things CAN get better (though I know it can be hard to believe when the pain and fatigue is so bad).

  • Awww, thank you MaggieS. That does sound very similar... it seems a whole different lifetime when we had that very happy go lucky, fit and pain free lifestyle. There are many many people that have such terrible symptoms and problems with lupus and I feel I am fortunate that mine are not so extensive. However It is the loss of use and dexterity in my hands and feet that I find so incredibly painful and frustrating, but gradually I am adjusting to this change in circumstances ie changed to automatic car, bought special cutlery and hand moulded walking sticks etc and most importantly learnt to slow down and rest as much as I need! I find it extremely reassuring to hear there is some light at the end of the tunnel. Bless you, thank you.

    Take care xx

  • Hi, Sparkle, I'm just wondering did the automatic car help? It's something we have been thinking of as I am finding changing gear more difficult and painful on my shoulders. It would be good to know if this has helped? PS: Yes we do have to make sooooooo many adjustments but like Maggie said with the right drugs we can at least function. Thank god for the people with made these drugs. x

  • Hi mstr, thank you.

    It has helped me tremendously as I just couldn't change gear and I found myself travelling miles out of my way just to avoid stopping, starting and gear changes! Also we have camera for reversing which all helps towards not having to move too much and twist and turn. And the new[ish] car is much higher too so getting in and out is less of a painful form of torture.

    I hope you manage to stay as comfortable as possible.

    xx

  • Thank you, I have been saying for weeks now it is getting difficult and my husband suggested an automatic. At first I was reluctant but I have been coming round to it ......and then I read your post. So I think now it is definitely worth it. Thank you.

  • :-) Good luck. I hope it helps you achieve a bit more mobility without the pain x

  • I have changed to Automatic, Fab! I can drive even in pain. But it doesn't drive it self home when I am exhausted though. mmmmmmmmm. something to invent.

  • That would be lovely wouldn't it! :-)

  • So sorry to read your post, Sparkle....... this massive change of lifestyle reflects my own. It is SO tough - and yet I do try to make the most of the occasional "good" days.

    I am trying to avoid processed foods and toxic products because these could well be factors in there being so many auto-immune illnesses around these days.

    Unfortunately - even so-called "fresh" food is probably treated with pesticides/preservatives or other nasties - so it is difficult to buy wisely, isn't it?

    I do hope you have loving and practical help to support you while you battle with the "sledgehammer"........

    Sending hugs and empathy......

  • Bless you thank you for your supportive words Looby. Hope you are able to have more good days than bad for a little while :-) xx

  • Did you try a 100% raw food diet? If so for how long?

  • Good to hear someone has found a way to ease the symptoms of Lupus. But remember many of usl live alone on a very meagre income and food is expensive likewise niche products. I also have difficulty cooking/preparing food due to various issues so could not spend a long time preparing food. I also struggle to swallow food and digest anything too fibrous or bulky. Lupus affects people so very differently and can make you feel so low it's very hard sometimes to be positive especially when support/benefits are being cut.

  • Hi jamg - yes, I do sympathise! Sometimes, I can only manage packet rice, or plain bread and butter. If I have anything more complex in the mornings, it just gets puked up!

    A good friend suggested Flaxseed oil as a supplement for Lupus - it works well for me, and a large pot lasts for a month.

  • I would be interested to know the name of your rheumatologist, the hospital you are treated at and the criteria out of the 12 internationally recognised criteria for lupus that you met in your diagnosis of lupus. Specifically which of your blood tests were positive. Doees your rheumatologist support your approach? I assume that you are on no medication but if you are, which drugs do you take and have you taken in the past?

  • Thanks for sharing this,I went to a doctor for chronic migraine and he recommended natural diet and no processed foods or anything with MSG in it , and it has made a big difference,but their are many other factors that effect lupus and some people have no control over them stress the disease process etc

    I love the positive attitude because sometimes it hard to be positive x

  • Hi I am glad that things are going so well for you but please be aware that things can change, I was experimenting with natural ways to control my lupus and all of a sudden something upset my body big time and I was rushed into hospital and was in there for quite an extensive stay. I even had doctors from other places and someone from B.M.J. came to take photos as they had never seen someone in such a state before! I felt so good about that as if I did not feel bad enough already.

    So please although it is going well at the moment if things start to change do be careful as things went down hill very rapidly for me. good luck though and I hope you have found something that works long term for you.

    Madmagz x

  • Dear Suncoast,

    I feel I should respond as it appears that my initial comments have offended you. This site is a great support to many who use it and I apologise if my comments in any way made you feel differently.

    Whilst I like many others wish you well and sincerely hope that the lifestyle changes you have made continue to control your lupus, as stated by others for many people who face chronic and debilitating symptoms the approach seems a little mechanistic and minimises the seriousness of the illness that controls our lives. As stated earlier I firmly believe in a positive mind and a healthy diet and lifestyle but sadly for many people that alone does not control the symptoms.

    In my example I am aged 44, up until this year I worked as a professional in the Criminal Justice System (a job which I loved) and continued to study, run a home and raise a family whilst keeping fit and healthy. My symptoms over the past 3 years prevented me from staying in work, I tried everything, a positive attitude, an 'I'll win' attitude and a belief that lupus would not beat me, along with healthy eating and exercise, sadly even when I reduced to part time and changed my roles I was unable to remain in work - this has had an immense impact on myself, my family, my income and lifestyle and I hope you can appreciate that impacts on this scale naturally make us feel defensive when presented with a theory that recommends feeling positive and eating well "beats" lupus.

    I wish you well for the future and hope your symptoms are kept at bay.

    Slowmo

  • Suncoast, lupus affects each person differently. I am now in remission but at the worst I had congestive heart failure, kidney failure, bone marrow failure and cerebritis. The doctors told my children not to expect me to live. I spent 14 days in the hospital. You are fortunate that your case of lupus was mild enough to be controlled with lifestyle changes. It is not that way for all lupus patients.

    I think the underlying message that some people here, like Maggi, are hearing is that lupus is our fault and that if we just tried hard enough we could make changes and get better. You don't seem to be here for support, but rather to tell us that if we really wanted to, we could make the changes you did and get better. Yes, those changes can help. When your immune system is destroying your organs and threatening your life, medical intervention is necessary. Life style changes can support the medical treatment in severe cases, but cannot replace it.

    I can't help but wonder, if you are indeed all better, why are you here?

  • Why am I here?? Because I have had positive results and want to share them in the hope it may just help someone else in some way, no matter how small, if it helps anyone in anyway that's all I wanted.

  • Suncoast, recently one of my support group members took someone's "natural" approach and stopped taking her medication. She ended up in the hospital with kidney failure. There may be people on this site who are desperate for a "natural" way to cure lupus and who may decide to take your advice and then abandon treatment. For this reason, it is important to temper your post with wisdom.

    You cannot eliminate all toxins. Your clothes and other fabrics have fire retardent. You are constantly inhaling toxins from paint, plastic, and other synthetics in your life. You are absorbing toxins through your skin from hygiene products. You are breathing in pollutants. There are pharmaceuticals in your water, yes, even bottled water.

    You made some changes and that is great. My concern, and the reason for my response, is that I would not want some desperate lupus patient to abandon treatment for your approach. Adding your approach is fine.

    Having been at the hospital bed of several people who took your approach and abandoned treatment and having attended two funerals for women who did that, I have to say that working with your rheumatologist and realizing that not all lupus can come under control as your did is important information for patients who are on this site.

  • SUNCOAST,

    First of all Thank you for sharing your positive advise.

    I do believe that diet has a huge impact on your health, and i have read about people that have tried the raw food diet and that it has made a signnificant difference.

    Also my aunt had Lupus and through diet change & homeopathy she has been in remission for the past 10 years.

    Yes i know we all have different severities of Lupus, some alot worse of that others and i'm sorry its so hard and horrible.

    But surely we should be happy for someone managing to improve heir lupus guys......where's the support?

  • Thank you so much chucch, everything we do is a learning curve and by me sharing my experience that has made some people think I am being "smug" or whatever then I have learnt a huge lesson today as all I was wanting to do was share my story in the chance it may help another as i am aware of the different degrees of Lupus I just thought that sharing some info that is FREE and not an advertisement mgith just help another person. xx

  • Totally agree with chucch above post. Suncoast was only trying to share her positivity and give some ideas on how we could try and help ourselves, nothing more. I have noticed on this site that certain people are quick to jump on their high horse to quickly, without fully reading and understanding the blog, and now these people have really made someone feel bad about what they wrote. Supposed to be a site where we can support and chuck around ideas to help us. Not a school playground. Disappointed.

  • Thank you :)

  • EVERYONE - in case you are tempted to believe you can cure your lupus with diet alone, please do a little homework on Dr Natasha Campbell McBride - the person who is speaking in the video in the link posted above. She may offer her advice on Youtube for free - but yes - you've guessed it, she does have an online store where people can buy the products she recommends; she charges £100/hour and she is not registered with the GMC. Her key idea is that "all diseases begin in the gut" - which doesn't square with everything else we know about medical science. What about bacteria and viruses that enter through the nose? or through a cut in the skin? What about STDs?

    I am not a medical doctor - but I try to evaluate things independently, and when I find myself falling for a 'line' am quick to question it. People may find this paper of some use:

    journals.cambridge.org/abst...

    (I don't know if you will be able to access the whole paper here, or if you can only see the abstract. However if you message me privately I can send you a copy of the whole paper - and anyone worried about what they eat may find it quite reassuring).

  • Sorry - just posted the wrong link to the wrong article. Duh!

    Try this: bclupus.org/reference_libra...

    The wrong article - which is about poverty and foodbanks - is quite interesting too.

  • Very helpful, thank you x

  • Wowee.. am really getting the anger coming through from Suncoast because of feedback which is full of sense .I Have to support Maggie S in all that she written and she has wisely expressed what we need to hear and understand about Lupus It is actually very uncomfortable,even painful to type this but I have to speak up. Have had Lupus nearly 10 years now and .nearly died with multi organ failure .It is only with excellent continuing management from my Rheumatologist that I am here. Can't write anymore now. Sorry

  • Me again. Read other responses so Well stated and asked Sarah Heney and well said Slowmo and others of similiar comment

  • Really interested in your post what other meds are you taking to get these great results? i am willing to try anything that can improve my health I would love to come off the 15 lots of meds that am on could you share what else your taking as I have been warned off supplements by my remmuy.

    Luppychick x

  • Could you explain what the water technique is that you mention- as I'd be interested to know more about it. Thanks. S

  • Hi sheilainacton,

    Forgive me if I seem negative - but as I said above I try to evaluate independently. I think Suncoast was talking about this method:

    hoaxorfact.com/Health/drink...

    and that website seems to have a sensible take. Google 'drinking water on empty stomach' and you will get many many websites to evaluate yourself.

  • Thanks! Very useful!

  • can you let me know about the water technique please I like you intend to try the alternative route.good luck

  • I love your positivity Suncoast :) Its refreshing to read about someone who's meeting their disease head on, and I must admit I was a bit disappointed at the response. You only wanted to share your own experience and thank you for it :) I wish you continued success xx

  • oh dear Suncoast - I think you just took a hot potato out of the oven and sadly you held it with a thin tea towel :-) You certainly provoked some discussion and debate and I think that you were just unfortunate to be the trigger. I was very heartened to read about your experience, which I would like to emphasise is entirely valid and I with my limited / light experience of lupus (also entirely valid) was glad to hear. I am very interested and keen to learn more about mind over matter - for example we all know for fact (please advise if this is untrue as my consultant may be wrong) that stress can bring on a lupus flare. If stress can bring on a lupus flare and we don't know the initial cause of lupus yet (or do we???) - then maybe major stress could be a cause. I throw that out there to everyone as I'm interested to know all your thoughts. My view is, that we have nothing, absolutely nothing to lose and absolutely everything to gain by pursuing potential non drug solutions to our condition. Every drug we take for one condition will have an effect on our body that we are probably unaware of. I can't do Hydroxychloriquin for more than a fortnight - last year it almost **cked over my liver completely. I had to stop taking it and then took some "liverace" which incidentally I can't find this year, to help try to restore my liver. I'm very scared of ending up on Prednisone - may have the name wrong because I've deliberately tried to distance myself from it as heard bad things. I spend many hours each week trying to rationalise each ache and pain and it's been a year so far that I've not taken the blood tests that my GP recommended. I've been on a strict diet for the last few months because one of the GPs at my practice told me he was 100% convinced my aches and pains would go away if I reduced my weight. I can't argue with this as I'm overweight so there is more stress on my joints. I've lost 10 lbs in five weeks..... so lets see how it goes. I'm sure Suncoast was not intending in any way to detract from the dreadful suffering that many people with lupus go through - merely trying to present her own positive experience which I was glad to hear of and which we need to share with everyone.

  • This has been a most interesting discussion Firstly I totally agree with MaggieS we all have different and varying degrees of Lupus some start off mild then unfortunately progress to organ involvement What I do know from reading a lot and having lupus since I was a child that the majority of lupus patients when. Diagnosed Change their way of life be it through diet or lifestyle and as we are all different what works for one does not work for another Three years ago saw me take a virtual intolerance to all foods Benzoates fluorides sulphites amines which left me with very little to eat I even stopped using all these products around the house so much so even most of my meds contained things I couldn't have So I had to come off them well that was one hell of a year costly too as I had to try homeopathy etc any how I am now worse on so much meds to make me feel better That I only hope that sun coast coming off her meds does not accelerate more problems like it did for me . I can see how her enthusiasm in feeling good generates a need to share this with everyone and that is a good and kindly thing to do .remembering that again it may not be the answer to everyone's prayers ps I'm 63 and think I've restricted my diet fairly well for a helluva lot of years take care everyone and good night

  • Sorry all I thought I'd posted that last night before I went to sleep Obviously not enough strength to hit the send button Oh the joys Just a little note Being positive is absolutely the only way to live life and I have always been of that ilk Now mind over matter I do also agree with UP TO A CERTAIN POINT . I did use mind over matter to achieve a lot but found that it can in the case of lupus be detrimental ie bring on a flare as you have pushed your body past its limits So be positive ,but be realistic in what you can achieve Life is for living Lupus or not we have to enjoy every moment we can The good and the bad we learn from and move on Hope you all have a good day.Im away to give more bloods ,I hate this one as its the fasting I like my gluten free porridge in the morning

  • Hi suncoast, I am not "qualified" to join this debate as I have no diagnosis. I am bipolar and celiac but have auto-immune issues. You may find my earlier comments useful as regards the lower back pain. I now eat no grains of any kind, as even rice gave me a problem in my hands/ wrist joints. It takes a long time for the gut to heal. All the best.

    lupusuk.healthunlocked.com/...

  • Re the bipolar and having other auto immune issues I thought this link may prove interesting to you

    jgp.sagepub.com/content/25/...

  • Starting point for reading about a leaky gut.

    glutenfreeguerrillas.health...

  • It's really lovely to hear that your diet is working for you Suncoast. I also understand how other people here may have felt a bit put out if they read your post as a 'if you tried harder' kind of post. I think everybody has made some really good points. Diet is very important but also must remember too that many people who eat stacks of chemicals live perfectly healthy lives so we have to acknowledge all the factors. Genes, environment, diet...illness is usually very complex and the treament sometimes needs to be too...I don't mind 'thinking outside the medical box' at all though (however as MaggieS says caution must be used), afterall...years ago, some of our treaments before they were tested would have been considered risky or a bit out there.

    Unfortunately however, it seems that Suncoast feels alienated having only just joined and that is a shame. It takes a while to get the general vibe of this site and also get the hang of getting your point across in the right way using the written word and as we all know, writing something is soo different to speaking something! Maybe it might be a nice practice to encourage new joiners to write a blog announcing their arrival and this would also help current healthunlocked members understand where that person was coming from and that they might still be getting to grips with the site?

    Last thing that any of us want is for someone having visited here to go away feeling more isolated if there is way we can improve people's experiences on this site?

  • Ps don't think for one second that suncoast meant any harm. Nice to hear a positive story x

  • Have any of you ever had really good news or something great happen to you that for that split second you forget everything around you & you just want to shout to the rooftops about it???

    We are all human at the end of the day.

    Surely we all know the severity of our own individual 'Lupus Cases' and should know that we NEVER just stop taking our meds WITHOUT consulting our Rheumy/Specialist first.......

    I didn't see *Suncoast mentioning anything about advising people to stop taking their meds.

    Suncoast: ''I decided there and then that I had nothing to lose by trying to beat Lupus the natural way without drugs.''

    It seems that people are jumping to conclusions or turning it into their own interpretation...

    I'm realist & tend to say things how it is, so i know at times i have come across as negative, but if i feel someone's getting a bit too much flack, i have to say something...so on that note:

    *Stay Calm & Blame Lupus (and most importantly be niceee)*

  • I dont mean to be a fence sitter but I can empathise a bit with both sides of the argument.

    I do believe (personally) that certain foods can aid or exacerbate a condition. There have also been many stories of the efficacy of some raw foods.

    I am also fully aware that people who are extremely ill find it difficult to do the most normal of things so to make an absolute change is a step into the unknown but is also often just too difficult to do.

    A positive outlook always seems to help. This is difficult if there are things, people or situations that are stressing you. I dont know whether stress causes lupus flares or whether when the body is under attack stress makes things worse, but it definitely seems to be linked.

    I hope you stick around Suncoast. It would be nice to hear future updates.

    In the past I have stopped taking certain drugs, but would never fully suggest that others should do the same as each persons story is different.

  • Totally agree, each person is different and different things work for each of us and sometimes sharing and swapping ideas can add to our treatment, sometimes not but always good to share ideas xx

  • I truly hope Suncoast has not decided to leave the site, it would be a shame not to hear of any updates in the future. I don't think anybody sets out to offend anyone, merely that we are all trying to express how we feel in this mad world. Some of us find that easier to do than others.

    I think for me, I am personally very negative about this whole discussion as I WAS that very fit, healthy, happy go lucky, positive thinker. That ate well, exercised regularly and, hand on heart, did not have a stress in the world! I had a fab job, fab family, fab home, fab kids, fab hubby... in a nutshell, a fab life!!! So if I was like that in the first place why was I struck down with this horrendously debilitating disease in the first place?! There is nothing more I could do to be any more health conscious or positive, in fact even now I call myself sparkle247 to remind myself of the person I once was.

    Everybody has to have a belief, something that will see them through the day, and for some that will be believing the meds might start to kick in soon [myself included in this one!] for others it may be that homeopathy will be the route they want to take. But the one thing we all have in common is the constant battle to actually achieve what we believe in and to try to get back, at the very least, a tiny piece of the life we used to have.

    Good luck on your own personal journeys everyone, let's hope we can all help each other out, one way or another. I know I have found this site particularly invaluable on my journey.

    :-)

  • Hi Suncoast,

    It is nice to see a positive posting and that you are doing so well ..long may it last! Like you I am using natural methods to stay well. I am over-sensitive to chemicals and decided many years ago to self-manage my SLE (plus a few other chronic conditions) and this suits me.

    I use homoeopathy (..great result!), herbalism, god nutrition & supplements, regular chiropractic, exercise (in moderation and when well enough to keep it up)...

    I am a curious person and like learning and trying anything new that appeals to me. If it works ..fine. If it doesn't ..well, I move on.

    I don't touch synthetic sugars or foods with additives. My food & drink, hair & body care and household products are all organic nowadays. It is costly but the only way I can function. I cut down on other things like cinema, theatre, shopping, eating out, etc...

    I have made my choices and what others may think of it is up to them. Like you, I do the best I can to stay healthy and wish you well in future. You had many positive responses Suncoast, remember them ..and forget about the less positive ones - thanks again. Good luck! xxx :)

  • A 100% raw food diet is NOT eating well, "eating well" can mean anything depending on your views on nutrition. The critics of the 100% raw food diet do not appeared to have tried it, only criticize it. I had extremely high blood pressure 170/95 +/- after one and half weeks it is down to 123/76 not perfect but we will see how it is in 3 months. I know Lupus is not high blood pressure, (I am here doing research for a friend) but "eating well" is not a 100% raw food diet.

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