Probiotics made me worse, person with ME/CFS

by Sabine

This comment on "Probiotics made me worse" is a response to my article on probiotics.

In December 2018 I did a screening of my microbiome with tests of 30 bacteria. At that time I thought 30 was quite a lot, meanwhile I know, that there are so many different bacteria… We don’t know much about how this microbime is functioning.

I was told I should take Symbioflor and I reacted with nausea. I’ve tried out another recommendation, Omni biotic stress relief, and ended up with nausea again.

I’ve tried a third way: I looked closer at the different results of the micobiome analysis and tried to find a product which would add the bacteria, which were obviously missing completely:

Bifidobacterium adolescent and Lactobacillus planetarium, both are said to be neuroactive. The resullt was an extreme overreaction of my immun system - I was very sick these days.

After this bad experience, I’ve watched a documentary on the microbiome. The scientists said, that it’s not possible to change the microbiome by taking probiotics at all - it would only work for a short time, because nutrition habits will make it return to the starting point. I’ve decided after watching that I would never try probiotics again.

In March, my best friend Anja gave me something for my birthday, I considered a strange gift: Effective Microorganisms – EM. Nobody knows exactly, what it is, but it seems to be able to restore the digestion. Here is the link to the product:

I didn’t want to take it, but she insisted that it was simply perfect, so I gave it a try. It tastes simply awful… But after 2 moth I can say that I have an improvement and my digestion is almost back normal. I still take it without any bad side effects.

Looking back, I would consider the immun-modulating and the neuroactive bacteria as very problematic for people with ME/CFS, but this is only a result of my personal experiences.

a fructose problem

There is something else I would like to tell you. I have problems with hypoglycemia. For 21 days I did intense testing of blood sugar levels. The result was that blood sugar was always quite low and during nighttimes very to critical low. I don’t have diabetes, insuline is normal.

My doctor supposed, it could be a fructose problem and I should avoid sugar to try it out. Since then, I have more stability in my blood sugar and more energy – I often told others that I seem to have an On-Off-Switch. Now it doesn’t switch to „off" in a second anymore. I still have a lack of energy, but it’s going down more slowly now.

In July I will have a genetic test, because this could be a very rare form of inherited fructose intolerance, called fructose-bisphophates deficiency.

The symptoms of this condition are exactly the symptoms of CFS and there is an onset with an infection. It’s not about digestion, but metabolism and especially about glycogenesis. If this protein is missing in the body, you need glucose to remove fructose from your blood, which turns out to be toxic, when levels get too high. As there is an intoxication with fructose, liver and kidneys are working hard all the time and have no free capacities for the removal of other toxic substances from the body. If there are to many toxins in the body, the immune-system collapses – it is the reason, why the onset of the symptoms is by an infection.

My doctor has told me, that there are many similar conditions and we still don’t know much about the mechanisms. My Mom had similar problems.

On your page on hypoglycemia you suggest that fructose might be better as glucose, but from my point of view, fructose is not a good alternative. We probably don’t know, if people get more problems with glucose (diabetes) or fructose.

I hope that it is beneficial in one or another way to yourself or another visitor to your CFS/ME website. We are all scientists of our own strange conditions, and who knows about this except people who share the condition!

From Sabine

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