I'm still learning about lupus myself, and trying to figure out where my polymyositis ends and the lupus begins. But I did find the following two websites with information on the connection between lupus and stress. Hope these answer some of your questions.
http://www.womenhealthzone.com/general-health/lupus/the-effects-of-stress-on-women-with-lupus/
http://www.emedicinehealth.com/script/main/art.asp?articlekey=19761
(Be sure to look at the second page on this site.)

Thank you, nanny1611 and Triad and please accept my sincere apology that I could not answered earlier.

I have to study nanny's kind providing of "womenhealthzone" and "emedicinehealth" in more detail and I also have to study Triad's medical findings in more detail.

I find it most interesting that Lupus patients have a problem to digest protein because of a lack of the enzymes DNase1 and protease. I certainly have to study more about that. I find this medical research result most interesting because I am in end stage kidney failure (my kidneys have functioned for years only between 10-12%) and theoretically I should have gone on dialysis almost seven (!!!) years ago. But thanks to my strict vegetarian diet (hardly any protein), and the fact that my body- weight is only (around 54 kg plus the fact that I have reduced my protein-intake to perhaps half of the medically suggested "normal" intake of protein, my "two little fighters" are still functioning without dialysis and without me having the obvious symptoms of end stage kidney failure. Mind you, I have no idea how things will develop in the future... but I give it a good fight to keep my kidneys functioning for as long as possible.

It is interesting that there is now medical evidence that stress influences prolactin secretion in animals and humans and as we know from our own experiences, stress "produces" our regular flare-ups and puberty and menopause cause us huge upheavals...

Of course there is no way that anyone can avoid stress these days but could there be a way to "counteract" stress BEFORE it causes a flare-up and I wonder if there is any way around this "devilish-circle" ?

If we could find a way to deal with stress better, perhaps we could even find a way to avoid these dangerous anti-flare-up-medications (i.e. bone- and mind-damaging steroids or liver- and stomach-damaging anti-inflammatories?

I wonder if there is a program or anything of that sort for SLE/MCTD-patients to take a course (?) to "harden up" their oversensitivity and/ or to train psychological ways to deal with stress better in order to avoid such terrible flare-ups?

Has anything like that been put in place anywhere? Has anyone tried anything out and it has been successful? Has anyone been working on such lines?


I have tried Yoga and self-hypnosis but I don't seem to be the type for that (I can't even be hypnotized) .The only way for me to relax is listening to classical baroque music or to play the piano, and it does relax me a lot, but only for the moment...

Thanks for your further suggestions from Kristina.

Thanks again for the explanation, Triad,

I shall try to find out how to balance my vegetarian diet even better in the future, so that I may have a better chance to keep my failing kidney function (10 - 12 %) going for as long as possible, without the need of dialysis.

So far this has only been made possible by my very low protein intake and my very strict vegetarian diet.

I also need desperately to avoid further SLE/MCTD flare-ups which naturally endanger my already very poor kidney function. To avoid flare-ups. if I understand correctly, I need a, a higher protein intake?

What would a diet to reduce SLE/MCTD flare-ups consist of?

If my body is not really able to deal with and digest my protein-intake, how would my body deal, if I had even more protein-intake ?

Doctors believed at one point that if the B-cells could be eliminated, there would be no more flare-ups. Because of that and because of my failing kidney function I was given a course of Retuximab-infusions (spelling?) together with steroid-infusions in 2008 and all my B-cells were eliminated BUT this course of Retuximab-infusions and Steroid-infusions gave me one terrible flare-up after another for the next two years nonstop and Retuximab had no positive effect on me or my kidney function, in fact I feel lucky that I have survived this course of Retuximab-infusions.
The severe flare-ups I suffered for almost two years nonstop were because of my multiple drug-intolerance which is part of my SLE/MCTD (as it is with many patients with such autoimmune diseases). But despite the elimination of my B-cells, the Retuximab-infusions had no positive effect to "my" SLE/MCTD, in fact, it seemed to me, that the Retuximab infusions made my oncoming flare-ups even more severe and much more potent.

Is there an answer to all this?

Thanks again from Kristina.

Thanks again, Triad, for your kind supply of information, I shall again study it with great care.

You asked for more information about my kidneys:
First of all I must say that my case has baffled many doctors/specialists and it is a miracle that I am still alive.
(Private health care providers or NHS-health care providers were equally baffled, the private ones I came across have definitely been much better studied and as a result they were much more professional in their approach to health care).

My case is as follows:
My kidneys first failed when I was a few months over17 years old and I had just arrived alone in a major city to study.
To provide for myself and my studies financially, I took on an office job and that must have caused a major flare-up as I worked during the day and studied in the evenings and one day I wake up in hospital and was told that I had been in a coma for a long while because of complete kidney failure (zero kidney function) with uraemia and coma. During the coma I was being fed artificially through drips etc..
I was then psychologically (not physically yet) prepared for dialysis and put on the urgent transplant list, but my kidneys miraculously slowly picked up again and I was discharged from hospital when my kidneys functioned about 5 %.

One year later (meanwhile I had continued my studies and was on sickness benefit) in 1972 my body was well enough for a kidney biopsy and the result of the biopsy was sent to the most eminent Nephrologists at the time who diagnosed chronic proliferative Glomerulonephritis. I was then told that within 6 months I would have to go on dialysis.

I then frantically searched for medical help to avoid dialysis and found a medical Professor (one of the most eminent European Heart-transplant-specialists at the time) whose hobby was preventative medicine. I consulted with him and he told me that if he were in my situation he would go completely vegetarian, no smoking, no fast food, no alcohol and no late nights. He also told me that if he were in my position he would study something which does not get me into contact with too many people because of my little kidney function: I had to avoid infections, colds, flus etc.) and so I switched my studies to Philosophy and European Literature instead. I also found isolated places to sit though the lectures etc. I have been sticking to my diet and life style ever since and I feel I was very lucky to have come across this Professor.

I then moved to England and became an expert in Calligraphy and Illumination, having had 27 exhibitions of my own works worldwide (I also won an international art competition with my work in New York USA) and naturally there were many flare-ups as a result of the stress of each exhibition, one of them caused me to suffer cerebral haemorrhages, as a result of NHS doctors being unable to diagnose my uncontrolled high blood pressure, which caused me to suffer cerebral haemorrhages because of untreated high blood pressure.

Every NHS nephrologist in England I came across wanted to urgently get another biopsy for one reason or another (mainly research) and they all harassed me for another kidney biopsy, but I refused on each and every occasion because after my first biopsy in 1972 I was told that I was lucky to have survived the biopsy in the first place, because of uncontrolled bleeding of my kidney and this bleeding was caused by the biopsy. I was then told by the same doctors in 1972, that I must avoid another biopsy at any cost and I have done so ever since. Unfortunately my refusal for another kidney biopsy caused me lots of trouble (and a bad reputation as an unwilling NHS patient) with NHS doctors in England ever since, but I believe that my refusal to give in to NHS doctors has saved my kidneys and my life.

Because NHS doctors were unable (or unwilling?) to diagnose my various symptoms, the Department of Health in England sent me in 1995 to the Continent to be diagnosed and there SLE, Sicca Syndrome, Sjoegrens Syndrome, Vasculitis, Antiphospholipid Syndrome, Hypertension, photosensitivity and many allergies were diagnosed. My biopsy-result of chronic proliferative Glomerulonephritis was not questioned by any doctor on the Continent, because the Professor who diagnosed the original biopsy was still well known as being the best to diagnose...

And then again in 2003 I had symptoms which did not fit my previous diagnosis and in order to get a diagnosis I was again sent by the Health Authorities in England to be diagnosed on the Continent and Mixed Connective Tissue Disease was diagnosed together with a deterioration of my cervical vertebrae (Cervical Spondylosis) which has to be rehabilitated my me and my husband every day.
The menopause from 1999-2009 gave me a very hard time for over ten years with one flare-up after another, including a stroke (uncontrolled hypertension again, no NHS doctor assisted/helped me to control my BP) and end stage kidney failure which was diagnosed in 2006 with only six months to go until dialysis and after the Retuximap-kerfuffle (by NHS doctors in 2008) I was again told that I had only another six months until dialysis (some doctors can be so optimistic, it is amazing to think they are supposed to be health providers to assist us to survive...) By the way: in an effort to save my kidney function I fell into the hands of medical NHS-experimenters in 2008 and they used me (without my knowledge) as a guinea-pig for their Retuximab research and fortunately I have survived this.

As an added information I must say that I have also been allergic to each and every Lupus treatment because of my drug intolerance and I am fighting so hard to survive with my diet alone because I know that with my drug intolerance there is hardly any chance for me to survive on dialysis or with a kidney transplant, so my only option remains my diet. I also cannot and never could take any pain killers because of my drug intolerance.

At the moment my kidneys still function 10-12% with no typical symptoms of end stage kidney failure. I have to take my regular rest and sometimes I feel very weak, but that could be the Lupus or MCTD or be a result of what my body went through over the years with my dreadful health history, it is not necessarily because of my end stage kidney failure. I also have no NHS doctor and no NHS specialist to go to in England ( I have official NHS documents stating that no NHS doctor in England can assist or help me medically, which states clearly that I am being discriminated against in the National Health Service in England). My only option to receive medical care is and has been for many years, on each and every occasion, to go private and pay money for private health care providers (no private health insurance in the UK takes me on because of my chronic diseases), which is a great shame because of my dreadful health history my husband and I were hardly ever in a position to make any money or to save up any money
.
I am sorry that it has become so long, but I thought I better tell you the details precisely as they are, in case you know of a way out of this end stage kidney failure.

Thanks again from Kristina.

Thanks again, Triad.
If I go to a private doctor next week and pay money to find out if I suffer from a mutation in the MTHFR gene and a link to elevated homocysteine can be diagnosed in my case, what could I do with this new diagnosis ?

Is there any treatment available for this a mutation in the MTHFR gene and a link to elevated homocysteine ?

Until now I had many different diagnosis, have travelled all over Europe to finally get my diagnosis, but I never have received any treatment for the diseases, because no treatment has ever suited my fragile body and/or my suffering from drug-intolerance ...

My only help so far has been my strict vegetarian diet, my normal body weight, my regular exercises and my very healthy life style...

Does a medical treatment exist for elevated homocysteine and mutated MTHFR ?

Thanks again from Kristina,

This will sound like a crazy question, but, Do you drink distilled water? If so, you might want to stop. A friend of mine had kidney cancer, and a connection was made between the cancer and his drinking distilled water all the time. It seems that distilled water flushes minerals (good or bad) out of your body.

Also, I've battled UTI's since my health deteriorated, and found several websites that suggested drinking raw honey and cinnamon in warm water. It has helped me. Don't know if you would consume a bee product like honey, but thought I'd mention it.

Lastly, did your doctors ever say that inflammation was a problem for your kidneys? Inflammation plagues me all the time, but I use a supplement called "Inflameric Zyme" from Olympian Labs, which helps in keeping my inflammation under control enough to keep me off prednisone for the past 2 years. Other natural anti-inflammatories don't help, only this one. The only difference is that this one contains boswellia, so I guess boswellia is good for my health. Don't know if any of these ideas pertain to you, but I'm just throwing them out since you're looking for possible natural answers.

Thank you, nanny 1611 for your kind suggestions.

I don't drink any distilled water and never have done, but, living in London (UK) I must filter my drinking water and my cooking water every time, because the water-quality in London leaves lots to be desired, since our government privatized (sold off) our water.
(i.e. hormones have been found in the drinking water etc.); since then we have to pay for our water, but the water-quality has deteriorated...

I was not told by a doctor that inflammation is a problem for my kidneys as such, but I know from my own experience that every time I have a big flare-up (which includes usually an inflammation on one of my other organs) my kidneys always suffer as a result. This concerns me at the moment because my kidney function is only hovering between10-12% and I can't afford to aggravate their fragile function by another big flare-up, because there is not much to go on anymore before dialysis, which I need to avoid at any cost. That is the reason shy I try ever so hard to avoid any further flare-ups.

I have never ever heard anything about "Inflameric Zyme" from Olympian Labs but I shall certainly look into it.

Thank you for your kind suggestion about the raw honey with cinnamon (I love both) in warm water. How much raw honey and how much cinnamon do you use for each cup and how many cups do you drink every day? Is the quantity of this drink you consume every day depending on your body-weight?

Thanks again from Kristina.

Thanks again, Triad, I shall study everything you wrote and read up more about it.
I have been tested quite regularly about my vitamin B12 and possible deficiencies, not only because I have been a vegetarian for decades, but also because I suffer from photosensitivity and always wear sunglasses and a hat outside and make sure I don/t get too much sunlight or artificial ultraviolet light from fluorescent lighting on my skin.

Every time my B12 was checked, it was within the normal levels and I was told that all my blood tests show that everything is within normal levels, except that I am regularly a little low in salt because I use no salt at all for my cooking/eating and I cook and bake everything myself, including my bread.

But I shall keep a careful eye on my vitamin B12 levels in the future. I shall also try to find the book about the fibromyalgia to figure out better ways for my diet.

Thanks again from Kristina.

Thanks again from Kristina.

P.S. What I meant is that everything in my blood tests is normal except that I am regularly low in the salt department and, of course, my Creatinine and my Urea (in USA is it called Bun?) state very clearly that I am in end stage kidney failure.

Thanks again from Kristina.

Thanks again Triad,
I shall check up again on my vitamin B12 to get a better picture, because the symptoms you mention about the lack of vitamin B12 sound familiar and I can see the context now that the absorption of vitamin B12 is dependent on the presence of protease.

I have also ordered Autoimmune: cause and the cure by Annesse Brockley and Kristin Urdiales
and Fibromyalgia: the cause and the cure , again by Annesse Broockley and Kristin Urdiales.

I have no idea how long it takes until the books arrive, but I look forward to read them and learn more.

Thanks again, Triad, for your studied information, it is very much appreciated, because it is very hard to understand and comprehend SLE/MCTD and all the variations/components that go with it. You have such a wonderful ability to explain matters in a very logical way.

Thanks again from Kristina.

@Kristina1
Most of the websites that mentioned the honey and cinnamon called for 1 teaspoon of each (honey and cinnamon) in a cup of warm water. I drink one or two cups per day. Some sites said to use up to 2 tablespoons of cinnamon, but I can't drink the warm tea with more than 1 teaspoon. But I do use cinnamon in other things, such as oatmeal or baking recipes.

Here is a website that talks about utilizing cinnamon alone for a UTI. I've not tried that, because I know raw honey has living organisms that are anti-bacterial. Using warm water doesn't kill these helpful organisms.
http://www.livestrong.com/article/416103-how-to-treat-uti-with-cinnamon/

A few other things that my doctor told me to try for my UTI's are as follows:
1) cranberry supplements or pure 100% cranberry juice
2) do not drink tea, because of the tannins
3) take my natural anti-inflammatory every day (She said that inflammation can cause stickiness, which collects germs and other unhealthy things.)
Hope these things help.

Thank you, nanny1611 for the details about the drink and the other information, it is very much appreciated.

I use cinnamon regularly as well.
My favourite sweety (for two people) with cinnamon is the following:

Clean and peel three apples (any apples) and cut them into little pieces and put into a saucepan,
cover the apples with boiling water and sprinkle a mixture of 1 teaspoon of sugar plus half a teaspoon of cinnamon over the apples, put a handful of sultanas over the apples and cover the sultanas with 1-2 teaspoon of honey. Then stir everything and let it boil for about 25 minutes. After 25 minutes, try to "mash/press down" the apples a little but not completely Then put everything into two bowls and cover it with Rice Krispies ( I usually use Kelloggs). It is very delicious, quickly done and it does not cost much.

Thanks again and kind wishes from Kristina.