new here and new to low carb eating

Great to hear that you're having such wonderful results, Inge. Keep up the good work

Always good to read about success stories. Well done Inge :-)

Yes, that's heartening Inge.

No, I don't agree with some of Dr. Myhill's reasoning either, but I thought that bacterial link was interesting. I tried looking up Wegener's and diet, but found little on that, so whether few people have actually tried LCHF to help it I haven't a clue. Dr. Myhill recommended a 'stone age' diet which is probably not that dissimilar.

I am sure that any diet that gets a lot more nutrition into the body is no bad thing, and has to make a difference.

I dont believe the body ever just 'turns on itself' for no good reason. Our bodies are awesome healing machines - when given the right tools to support it.

AliB wrote:Yes, that's heartening Inge.

No, I don't agree with some of Dr. Myhill's reasoning either, but I thought that bacterial link was interesting.  I tried looking up Wegener's and diet, but found little on that, so whether few people have actually tried LCHF to help it I haven't a clue.  Dr. Myhill recommended a 'stone age' diet which is probably not that dissimilar.

I am sure that any diet that gets a lot more nutrition into the body is no bad thing, and has to make a difference.  

I dont believe the body ever just 'turns on itself' for no good reason.  Our bodies are awesome healing machines - when given the right tools to support it.

Sadly Wegener's is a rather rare disease. There are others in the Wegener's support group who became diabetic via the steroids and at least one other who is doing the LCHF diet and has had great benefits with his diabetes but not sure what it is doing for his Wegener's. Time will tell.
I was 7 years in the Marshall Protocol treatment and in that time I was doing very well. I had several Autoimmune conditions which were corrected. The MP has not found any one drug curative however their claim is that the only way to "cure" any of these Autoimmune diseases is by slowly re-activating the immune system. This works well but takes a very long time and can be a very painful journey. Unfortunately there was nobody with Wegener's in the group and once I was diagnosed I had to make a very quick decision. As the MP stimulates the Immune system I had to quit as for Wegener's I needed to quieten down an overactive immune system. So I had to stop the treatment at lest until I am in remission. If that happens. When the immune system goes after all the pathogens it can make us very ill, so you need to be strong to put up with it. For me Wegener's became very suddenly very nasty and the only thing on offer was this steroids and immunosuppressive treatment. I joined several support groups and found out that there were even Naturopaths and healers on this toxic treatment because they could not help themselves using natural cures. Hopefully as more is known about these nasty diseases we will discover a less toxic way of treatment. But with a disease that can be fatal within 6 months without the right treatment you just can't muck around. It is also a very difficult disease in that each patient presents with different symptoms and if you start off with the wrong specialist it can take far too long to become diagnosed. Many arrive at the diagnosis when they have already lost organs. We have quite a few who have had kidney transplants. I have heard that Wegener's can destroy a kidney within 2 weeks. Hence I have quite a number of specialists working with me to monitor my organs and my health. I was very lucky to find specialists who happen to have other Wegener's patients. Not everyone is so lucky. My GP for instance hasn't a clue what Wegener's is and I have to educate him along the way

Inge you are doing so well.

Thank you to, for sharing your story, I have learned so much about Wegener's, a disease I had never previously heard about.

Take Care and ......

All the best Jan

Must be hard Inge - and quite frightening at times. I can sympathise.

I have systemic worms and the Medical Profession just is not interested. These things are like living hell. Constant moving, squirming, wriggling, writhing, biting all over my body - it never stops.

AliB wrote:Must be hard Inge - and quite frightening at times.  I can sympathise.  

I have systemic worms and the Medical Profession just is not interested.  These things are like living hell.  Constant moving, squirming, wriggling, writhing, biting all over my body - it never stops.

Hi AliB. I had never come across this before. Must be terrible to live with Is there no treatment available?

There may be drugs that could deal with them, but my doctors will do nothing without 'proof' and so far I have been unable to produce any. They are convinced they would show up in stools, but the two I have given have both come back 'negative'. Unless they are sent to a specialised laboratory - and as far as I am aware there is only one in the UK and it is not in Wales where I live, the testing procedure is hopeless. There are one or two labs in the US that check for helminth DNA and they are far more accurate. Apparently.

I could provide more samples, but every additional 'negative' would further bang a nail in my 'nutcase' coffin. Besides, because they are systemic, if the drugs did kill them, would having a body full of dead, rotting worms be such a good idea???

I have thrown virtually everything natural at them I can think of, but they just laugh at me and hatch more babies! Ner, ner, ner, ner, ner. :0(

I think I am coming around to the idea that they are there for a reason. That despite the concept that they are 'parasites', they actually have a job to do. Nothing happens for no reason. Bees get infested with the Varroa mite, but are they there because the bees are already sick? Ash trees get a fungal disease, but fungus is there to help break down already decaying matter. Is the disease there because the trees are already dying?

Put flour and water together and as long as the environment is clean and the temperature is favourable, as long as the mix is maintained it will become sourdough. Some have been kept going for 150 years! But neglect it, and very rapidly it will be colonised with microbes that will break it down as it decays. The decay will always come first - the microbes follow.

LCHF actually made my insulin resistance worse. I struggle to keep my levels in single (mmol) figures. I could take more insulin, but I know that isnt the answer. I cannot lose weight unless I just water fast and take no insulin at all. Are the worms there because of the sugar levels,
I wonder?

I know I somehow need to change the environment in my body to one that removes the reason the worms are there, but as yet I haven't figured out what or how. Taking salt/vitamin C seems to have helped a bit (I figured if it can help people with Lyme's Disease, it could help me), maybe because of the added minerals from the natural sea salt, but maybe over time the beans & greens diet/resistant starch will help too.

I suspect they have been quietly lurking in there for years - I have been sick most of my life - but for some unfathomable reason they came out of the 'woodwork' 18 months ago, and have been driving me to distraction ever since. It answers so many issues I have had over the years that so very obviously are now linked to the worm activity. Whilst they may be there for a reason, they have been there so long they've set up a nice little eco-system for themselves.

AliB you may find this link of interest. Just another theory I guess.

Effects of parasitic worms on the immune system

That was interesting Inge, but very limited. There were only a few diseases studied and only with certain typed of parasite. How other diseases with other types of parasite would respond is largely unknown.

Whether my unwanted guests are helping or hindering I cannot say. They certainly hinder my sleep and that doesn't help at all. It's hard to sleep when things are moving inside you.....

How is the insulin requirement now Ali ? Are you still fairly stable ? Did you discuss a basal only insulin ?

I rang the Diabetic nurse and left a message and my number over a week ago and haven't heard a peep Mo.

What is a bit interesting is that although I have increased my carbs a bit, having beans and some more starchy veg, like sweet potatoes, celeriac, carrots, etc., I've hardly had to increase my insulin.

I came across some references where people found that although they could keep their sugar levels down on very low carb, any additional carb would put it through the roof. That does make me wonder if lowering the carbs too much kind of makes the body 'forget' how to process carbs in general. After all, insulin does actually need carbs to work on.

It will be interesting to see what happens over time. Some find it takes a month/6 weeks for the body to adapt to resistant starch foods.

Regular low carbing works but this can leave us more sensitive to a sudden increase in carbs. The answer is not to allow this to happen or accept an occasional highish reading. Hope your nurse gets back to you soon. I really think a background insulin may be more suited to you Ali.

Reading some of the comments here ....... as a non diabetic low carber (no more than 50 a day) what I have observed is, if I should have a day of extra carbs perhaps a slice of Waitrose cheesecake or a danish pastry etc my body can and does often re-act. I tend to get a headache, can feel out of sorts and generally not my usual self. I am sure that my body does see carbs as poison and re-acts to them.

That is why, to me, it is not worth it. I can eat a low carb form of desserts and stay within a good daily carb intake. Up to 50 carbs a day suits me and that is why I do embrace the LCHF lifestyle.

All the best Jan