Preying on the vulnerable?

Like I supsect most people who are experiencing the symptoms we do and are faced with the prospect of a chronic disease, I have been doing lots of internet research. Some helpful....most not. I stumbled upon an American site that suggests that all people with autoimmune disease have this because they have to that point eaten the wrong foods. This site offers (for a cost) a programme of spiritual guidance and fasting. Food is then re-introduced and involves only raw fruit and veg. It claims to cure autoimmune disease including Lupus. Now I have a bit of a problem with this. First it seems to suggest that those of us with a malfunctioning immune system have been doing it all wrong and second it is preying on the vulnerability of having to cope with a chronic disease. I am a great believer in a healthy balanced diet and exercise. I have been a vegetarian for 24 years and have been involved in sport and exercise for most of my adult life. So what exactly have I been doing wrong then?

[DaleDiva]

As you so rightly point out they are preying on the vulnerable. People want to be cured and get that desparate they will try anything.

Our immune systems don't work, it is nothing we have done wrong and something we can't cure.

[mstr]

Hi, good point entirely accurate. I do think though that if I were to go back I have led a very hectic lifestyle, in work and out and did a demanding job. I do think, in part, that this does contribute as I believe your body is like a car......if you put the wrong petrol/diesel into it then it doesn't go too well. I think nutrition is very important but not to the extent that it causes immune conditions (that's really rubbing salt into a wound)....but I think nutrition, and lifestyle plays its part.....I think the rest is down to genetics? Good question by the way xx

[willow24]

there should be a law against these kind of sites that offer cures without medical research and reports. i also have crohns and a few yrs ago stumbled upon an american site that said could cure all people with crohns with prayer, oh and a fee! unfortunately people who are desperate for a cure will resort to desperate measures. its heartbreaking

[seekingfreedom]

I had an eating disorder and was told I may have exarcerbated the onset of Lupus/CTD/auto immune stuff by a well meaning person ; Ive googled it but come up with nothing definitive, but it does worry me that I may have (unconsciously) expedited my symptoms.

[Someonesmother]

You haven't been giving them all your money!

[madmagz]

Please please please don't rely too much on what you read the best place for information is here with your fellow lupies or the lupus uk website and their publications. I had a terrible experience wanting to go down the "alternative route" and so started reading all sorts of weird and wonderful things. Not to my advantage I ended up being admitted into hospital in a terrible state on a morphine drip with I.V. anti biotics and in a total mess it was not a short stay either. One thing I and several other lupies have seemed to find having a positive result, as I seem to recall from various posts is Manuka Honey.

Good luck and be careful

Madmagz x

[Dutch]

I think part of the problem is most of us want/need a reason, explanation or even something or someone to blame. Most of the time,unfortunately, it is just bad luck. I have Lupus, developed Acute Leukaemia and now am severaly disabled through Peripheral Neuropathy as a side effect from Chemo. At no time did any doctor or consultant blame me or my lifestyle, they all said it was pure bad luck. Could do with finding a few four leaf clovers now...

[Nightjar]

I don't think getting lupus, or any other chronic condition, can be blamed on some people eating more 'wrong' than others..!!

However, I am quite convinced that pesticides, herbicides and the many synthetic chemicals in food and drink are what makes food and drink 'wrong' for all people.

Then some people (like lupies) are so sensitive that we get ill long before 'normal' people do. People with auto-immune conditions really are the 'canaries' of the modern world and I believe that what makes us unwell, will make all people unwell ..sooner or later!

There are many theories about chronic disease and no simple answer. In my thinking there are always more than one reason and also more than one way to seek cure. Part of what I have chosen is organic produce, in the hope of avoiding as many pesticides, herbicides and anything synthetic (including 'sugars') as possible.

Please DO NOT FEEL GULITY because you happen to live with lupus - it's not down to the 'grass roots' ..is it?!!! xxx

[Voutton]

Hi madlottie I agree that these are sites preying on the desperate and it is good when we can come on here and be forewarned of them Now from what you say they are taking the elimination diet and spinning it out to make money I've had lupus all my life and it wasn't till I did the elimination diet that I was more mobile and less plagued with different symptoms Now I do know a lot of people are not wanting to live on green grapes (my chosen starter ) for 10 days then start to introduce foods one by one to find what they are allergic to ,but believe me it works . I first did this 20 years ago and it got me out of a wheelchair Everyone's body is different and some can eat anything for their hearts desire , but when we have compromised immune systems Is it not better to try and find what is exacerbating our systems and remove it from our diet than take medication ? I know also that stress is a big no no for us. Also the coatings and fillers on some of my meds I became allergic to so had to do another elimination diet 3 years ago which added more no no foods to my list plus toothpastes mouthwashes etc etc Our bodies are so bombarded with additives preservatives and all other c--- that we need to vigilant in what we eat. I have to take steroids now plus lots of other meds but firmly believe that I would be in a much worse place had I not followed the elimination diet and strictly adhered to it all these years.

[Hidden]

While food is definitely important, I don't think any of us should feel that we have caused our own problems. Lupus seems to have both a genetic and an environmental component. This means that even if you are genetically susceptible to lupus, you won't necessarily have it unless you encounter an environment that triggers it. Food could be part of that environment, as could stress, as might any of the chemicals and other toxins we encounter every day of our modern lives. It's great if people can control their lupus by diet - but not everybody can (there are some pollutants that we can't get away from).

I have permanently fallen out with a friend who kept insisting that food was the source of my problems and that all I needed to do was read a book by "Dr" Joel Fuhrmann, and follow his advice....

Like other people who have commented on this blog, until I got ill, I was VERY fit - training to swim open water competitions as a veteran (just turned 45) by swimming 1.5 miles every morning before work. My lupus onset suddenly and seemingly as a result of a flu-like virus. At the time I had also been doing 3 jobs (I was a lone parent) - so stress may have also been part of it. Since then, more than 8 years ago, I have tried many dietary 'cures' and lots of alternative remedies and nothing has stopped the lupus relentlessly getting worse.

These days I don't beat myself up if I eat the occasional bad thing. I know this didn't cause my lupus (some genetic and random bad luck did) but I do try to eat healthy food and take regular exercise. NO ONE should be made to feel their lupus is their own fault. Guilt tripping is part of the problem and not part of the solution, in my view.

[Hidden]

The responses to my original post demonstrate what supportive and well informed people you are on this site. Voutton it is fantastic that you have had such a positive response with the diet change. I agree with everyone that this auto-immune disease is multi-factorial. The genes (I suppose we could blame our parents), the environment (we can blame industrialisation), diet(too much of this and too little of that perhaps?We can blame the processed food manufacturers). What I get from all of you is that you acknowledge that chance and bad luck has played a major part. But what I also get from you all is a sense that you are taking the positives out of the bad luck. Offering such support to each other here is testament to that. Today I see the Rheumatologist for the first time. I will report back later............