Ketosis in CFS
My, but life is full of little challenges. Our latest is the observation that our bedroom, where my CFS husband spends 20 hrs/day or so, is just plain stinky.
This post is mostly a curious one, wondering if anyone else has ever noticed this?
We've washed everything, change sheets and his clothes very often and still a stinky bedroom.

I've even moved everything and taken every drawer out so see if we had a dead mouse somewhere. nope.
All I can conclude is that is it from dear husband's breath. It definitely smells like he has ketosis, something I'm familar with from our past competitive athletic days when serious over-training would lead your body to start living off itself, resulting in very weird breath. And for sure the stinky part would be compounded by the fact he is always cold, so has the heat cranked up and is always closing the door to keep the heat in. When he is not in the room we open the door and windows, even just a bit if it is cold, and wide open if warm. That helps a bit but not for long. If we had two bedrooms I'd rotate him day to day, but alas, just one.
So, is it just us, or has anyone else noticed something similar? Of course, if so, any and all suggestions to alleviate are welcome.
Hi, pamd.
As far as I know, this degree of ketosis is unusual in CFS. Most PWCs have some elevation of beta hydroxybutyrate in their urine organic acids tests, but I don't think that having such severe ketosis that acetone is exhaled in significant quantities is very common in CFS. Maybe others will correct me if I am wrong about this.
I do have some concern about your husband, because if ketosis becomes too severe, it results in ketoacidosis, which can be life-threatening. In this situation, the levels of the ketones become high enough in the blood to overcome the body's ability to buffer their acidity, so that the blood pH drops too low. I think it would be a good idea to have the pH of his blood measured. If it is too low, a doctor could help to raise it up. That would not stop the generation of ketones, but it would protect your husband.
I would be very interested to see the results of a urine organic acids test on your husband. I see that Genova Diagnostics serves France through
christine@bionutrics-france.com. Their urine organic acids test is called the Metabolic Analysis Profile.
Generally speaking, ketosis occurs when acetyl-CoA rises high compared to normal in the cells.
This is usually a result of the cells not being able to get enough glucose. The usual causes of ketosis are diabetes, starvation, a very high-fat ("ketogenic") diet, or prolonged, severe exercise, as you mentioned. When the cells do not get enough glucose, they cannot make oxaloacetate fast enough, and thus there is not enough of it to react with acetyl-CoA, so acetyl-CoA rises. It then reacts with itself to produce ketones.
In your husband's case, I doubt that any of the usual causes of ketosis are present. I think that it is more likely that he has a severe block in his Krebs cycle, causing a very high rise in citrate, and that for some reason (perhaps genetic), his body is not able to divert the high citrate into the synthesis of fat. The result is back-pressure on the citrate synthase reaction, which would cause acetyl CoA to rise, thus generating ketones. I'm guessing that your husband does not gain weight. Is that correct?
I think that most PWCs, who also have a Krebs cycle block, are able to divert citrate into making stored fat, and that prevents them from developing severe ketosis. It also causes them to tend to gain weight.
The fact that your husband always feels cold is evidence of mitochondrial dysfunction (note that the Krebs cycle is located in the mitochondria, so a block in the Krebs cycle would be consistent with this).
You asked for suggestions of how to alleviate this problem. Elsewhere on this forum I have posted about the Simplified Treatment Approach for lifting the partial methylation cycle block in CFS. When this treatment is successful (as in about two-thirds of the PWCs who have tried it) it allows glutathione to come up to normal, and that should eventually correct the problems in the mitochondria. If this worked in your husband's case, I think it would stop the ketosis. If you want to look into this further, you could go to this website:
http://www.cfsresearch.org Click on M.E./CFS, and then on my name. As I've noted elsewhere, my position is that a person needs to be monitored by a physician while on this treatment. I also favor running the methylation pathways panel to determine whether there is a partial methylation cycle block before trying the treatment. This panel is offered by the Vitamin Diagnostics lab in the U.S. and by the European Laboratory of Nutrients in the Netherlands.
I hope this is helpful.
Best regards,
Rich