Bad breath & stinky bedroom?

[pamb]

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.

 

[George]

After my CFS became active I noticed a distinct body oder change. I smelled 'sour', my sweat, breath, urine everything it seemed had gone sour on me. (grins) I was watching Rocky and Bullwinkel (long story) when I saw a short on using chlorophyll to get rid of onion breath. I remembered something about this from middle school chemistry so I looked it up on the web. Sure enough it's suppose to help with body odor. So I order some and I've been drinking a teaspoon in water twice a day for just over three months now.

It has worked for me like a charm. Plus my digestive process seems to be working better as well. Now my house is back to just smelling like dogs. (big grins)

 

[richvank]

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

 

[Lily]

Pam

Could you or have tested your husband's urine for ketones? This would be a simple beginning. Those strips are about $12 and can be purchased at the drug store. There's no need to purchase the expensive strips that include 10 or so tests. Is your husband severely restricting his diet? Perhaps severely restricting carbohydrates for some reason? I know many have serious food allergies and restrict a lot of foods. As Rich said, ketosis is not usual in CFS and I would follow up if ketones are present in the urine because you can get into some serious problems, renal failure, etc., that can be life-threatening as Rich said.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[pamb]

Hi Everyone,

Wow. Thanks for a whole lot of useful information. I'm really glad I posted this. John has been trying to follow a very low sugar, higher protein/fat diet. And perhaps not enough carbos. I've finally got him eating a big bowl of quinoa with plain frozen raspberries and coconut milk in the evening. The big difference is he has cut out wheat to see if that helps the digestion, and unfortunately he is not at all fond of the rice alternatives I eat (I've been gluten intolerant for years). He does like potatoes so I'll start adding more of those as I'd definitely suspect he needs more carbos/glucose.

George: Hopefully cholorphyll will be an easy short term solution. I'll check at the pharmacy today. I have found French pharmacies, other than homeo stuff, are pretty much owned by the pharma co's so I end up getting most of John's supplements sent from Great Britain. Hopefully cholorphyl is not so hard.

Rich: I'm seeing John's Doctor tomorrow so I'll just print out your reply and check out your other info and take it in to him. He's sympathetic but an old school French Doctor, so generally tolerates all my 'natural' stuff, but does not take an active part in it. I just managed to get him to do a full 3 day stool assessment and am going in for the results. Although in French, it looks like John does indeed have lucocytes (sp?) and nitrogen there, and at least the lucocytes should not be. Hopefully we'll get a bit more analysis done into why.

John had a full analysis done by Dr. Myhill's lab a year ago, and yup, he has nasty mitochondrial problems and a messed up Kreb's cycle. On top of it he does have a genetic problem with glutathion. And he just can't tolerate glutathion supplementation. And you are right Rich, he does not gain weight and is a bit of a scarecrow now. We have lamented this to the Doc's and of course they just respond that unless it is a really fast and dramatic weight loss they will not check it out. Now, with something more concrete to take to them, and one whiff of John's breath, maybe that will change.

I will most definitely read up on the Simplified Treatment Approach and will take into in to his Doc. Could definitely be a challenge to get much involvement there though, as his Doc is near retirement age and very concerned to stay on the correct side of very conservative French medicine. I notice there is a European group now for ME/CFS research, and France is NOT involved. I'm really hoping a positive XMRV result on day might get him a bit more help 'in the system'. But of course that is a whole story to be played out.

As many here already know this thing is very hard on the finances so my options for alternative care are now limited after spending much money before the CFS diagnosis, trying to find out what is wrong and fix it. John has been ill for 8 years and really ill for 5, so all the spare money is now more than gone and my earning ability is rather hampered by my part-time nursing home job. So be it for most of us I guess.

More big thanks for all this good info. Off to do more reading. I'll post in awhile and let you know how it goes. And I will contact the French lab mentioned if John's Doc can't request the tests needed.

Still smilin'
Pam

 

[Athene]

Can you be specific about the smell?

Ketones give a general sweet sickly smell a bit like nailvarnish remover and cheap nasty chewing gum mixed together. You only have to suck on a few sugar lumps to make it go away.

If he has a totally weird smell he could benefit from taking MSM. Some people get a weird pong when their methylation system breaks down at a certain point and msm is supposed to clear it up. Rich could explain this better - the science of it is beyond my bounds of understanding.

If it the smell is basically like tramps trousers, then he could have heavy colonisation of his skin by MRSA, which is surprisingly common and can get bad in bed bound and very ill people. You need to kill it by putting dettol in his bath water, or else one cup of household bleach. I know this makes me sound mad but it has been medically proven and there is a research article about it on the Internet somewhere. I have done this to myself on occasions, it only takes 2 baths to deal with it.

If the smell is so disgusting that it make syou run to the window screaming as you throw it open then he could have badly infected sinuses which will need antibiotic treatment. You will smell this on his breath from quite a distance.

The other weird possible pong is that he has terrible guts and farts prolifically when he's asleep. I am not going to tell you how I know about this because I am a LADY but you should suspect this situation if the smell is like rottong vegetation or stinky bad eggs. If the latter then he will be a H2S producer and you need Dr De Meirleir to sort him out!

I am cursed with a nose like a bloodhound so I have a lifetime expoerience of tracking dowen odours and eliminating them. If the smell does not fit any of these profiles please try to describe it very well and I may be able to make more suggestions.

 

[pamb]

Hi Again,

Rich, I just finished reading about the protocol. I'll print the study off to give to John's Doctor tomorrow and start increasing carbo's today.

Unfortunately, it's been a bit tricky to bring in supplements from outside the EU, as French customs simply seize anything coming in that they think is not approved here or suspicious. I used to get my supplements sent from US and they just quit making it through a couple years ago. With very limited funds it is too risky to pay for stuff that may never arrive BUT I'm going to be in US for a few days on business in early June and could have a big supply sent and held for me at my hotel. It's not a problem to bring things back yourself.

John is on the general supplementation program for CFS recommended by Dr. Myhill so for a year has been taking:

CoQ10: 500 mg/day
Acetyl L Carnitine: 2 gm/day
D-Ribose: 10 gm/day
EPA: 2200 gm/day
EPO: 800 gm/day
Vit C: 1 gm/day
D3: 8000 gm/day (more than recommended by Myhill, upped after my reading on D3 here and elsewhere)
Mineral Mix: custom from Myhill, with all the trace elements etc.
Vit E: 600 gm mixed tocopheral, 400 mg regular E.
It's really hard to say how much it has helped. John is much better in many ways, but has also reduced his activity dramatically and has become thinner and a slow decline in energy available to spend each day. Victoria's recent 'feeling better' blog post reminded me of John, as understanding the nature of the thing, and quitting fighting it has resulted in improvements. At a 6 mo. check of his mitochondrial function it had increased considerably from the level last January, and I don't know where it is now. No more funds for lab tests.

 

[willow]

Hi Pam,

Do you ever check out Amy Yasko's site? http://www.ch3nutrigenomics.com

Some children on the Autism Specrum have some of these smell issues. E.g. a mousey or damp towels in a locker room smell can be probelms with phenylanaline metabolism. I had this on my hands recently, like I'd been working out in 30C wearing rubber gloves. Foul. For me it seemed to be transient, perhaps releated to the pathogens I've been trying to expel, but I looked up phenylanaline rich foods so that I could limit them for a while.

I'm sure you can find this online elsewhere too. You might need to get more desriptive with the type of smell. And is it also coming out of his skin.

Getting thinner doesn't good though.

FWIW I know someone who becomes smellier and thinner when having gut bug flares.

Would he be prepared to experiment with his supplements? Say trial removing a few? E.g. say he had parasites or bacteria active in his stomach which many of us have, d-ribose might be ideal food for those and so non-ideal for John. Just 1 idea...... It's all very individual.

 

[pamb]

Getting specific

Thanks Athene, for the perfect description. It is the sickly sweet part that really stands out. I'm about 90% sure it is ketones, from the description, and from my prior experience of knowing athletes who were seriously over training.

Can you be specific about the smell?

Ketones give a general sweet sickly smell a bit like nailvarnish remover and cheap nasty chewing gum mixed together. You only have to suck on a few sugar lumps to make it go away.

Good news about the sugar lumps as we can try that diagnostically today before I go to see John's Dr. this afternoon. It is not coming from his body, which is very good from the sounds of it, just his breath and more noticeable in the early morning, I suppose because it has been a long time without food.

He used to eat something pretty sweet about 6 am and come back to bed, but has been trying hard to stick to something resembling Dr. Myhill's Stoneage Diet, so has cut back on processed sugar completely. Perhaps not a good move in his particular case.

As mentioned, we are trying to get to the bottom of his gut issues, as best we can on the healthcare system, and hopefully today I'll be able to convince his Dr. to do a few more tests to perhaps find out what is happening in his gut to have leucocytes in stool, and then come up with something to do about it.

Willow: Rich's post led me to his protocol and paper, which of course led me to Amy's site. So my job this morning is to print out some of that, with the links, and take to his Dr. It seems trying the protocol Rich suggested makes sense but I may have to wait until June to pick up the supplements while I am in the US. I have not priced them yet, but figure a 3 month starter supply is a bit pricey to risk just having it seized by French customs.

Thanks everyone for all the very useful suggestions and mostly for getting me on the the right track to do something about it rather than just mask the ordour.

And thanks Willow for clarification on D-ribose. I had read that maybe D-ribose was not a great idea, but when I went back to check exactly why I could not find it again. I told John maybe he should try no D-ribose, but of course he is so desperate to feel better he hates to stop anything that might help. Now, thanks to you, I have a clear reason to stop and he can do that starting today. I'll discuss with him then hide the D-ribose. He takes his own meds and his foggy head would be quite likely to forget to change that particular habit. And wouldn't you know it, I've just ordered some more from the UK.

This darn CFS is sure a lot of work. I truly bless Cort and all the people here for providing such a valuable resource. It is no wonder so many have suffered for so long as it is the very, very rare Dr. who has a clue or will spend any time actually researching potential solutions.

With thanks and blessings,
Pam and John

 

[willow]

Mornin' Pam,

There's a French young man living in France who is using Dr Amy's protocol. If you and John decided you were keen on trying Rich's simplified he might be able to give you advice on buying the supplements.

I feel uncomfortable posting his name here or how to contact him but if you'd like it send me a private mail.

 

[Athene]

Re: the sugar/stoneage diet, it could be worth trying to get some pure glucose and sticking to the rest of the diet. Glucose gets absorbed from the stomach (some even from the mouth I think) so theoreticaly it should not do anything harmful in the intestine.
I have been doing this for a while and it seems to work well. I get a lot of gurgling if any sugars reach my intestine.
It works best to have a very small amount every couple of hours.

 

[pamb]

Hi Athene,

This is getting more interesting. I saw John's Doc today and he was just not too interested. He did suggest I just feed John lots of fruit and he'd be fine. I hardly thought that was a long term solution, but short term something needed to be done. So I stopped on the way home and bought a bunch of yummy fruit. So I think we'll eat that anyway, just for a treat.

THEN - your suggestion of pure glucose being absorbed by the stomache and not making it to the intestines sounds brilliant, as I know what will happen when the fruit hits John's intestines. Much gurgling and probably some pain later. BAck to town (just 4 km away) for some simple glucose. I might even have some in the cupboard from our athletic days as it was always useful to have for after a ride if one miscalculated distance + food. We just always had some in our bags.

Willow, I will PM you to see about French sources. That would be super. It seems we'll get no medical supervision on it, but what else is new with CFS? The Docs, other than the few blessed specialists we have, just don't seem to care. Can't say as I blame them, as it is a tricky task. But it sure is disheartening just to get the old shoulder shrug. Got the same shrug today about leucocytes in John's stool. He figures there are not enough to be worth worrying about. In one way he is being kind as John hardly needs long drives 1.5 - 3 hrs to see specialists, but gosh, if we knew what was down there, maybe the right antibiotic could make a big difference. No one has ever tried any antibiotics on John. And of course we're in no hurry to try them out just for fun either. Enough ranting.

Thanks for all your help,
Pam and John

 

[Athene]

If you can make it to Brussels from where you are and if you have enough savings, I would strongly recommend Kenny De Meirleir. He's my doc, he is THE man on dodgy guts. Afterh the first appointment you can do a lot by telephone.
The leukocytes in stool are going to be mainly lymphocytes, which the immune system uses to try to kill the bad bacteria. The immune system never wins unfortunately. My son and I both reached the bowel incontinence level of severity at different times, I am afraid to say, but we are both now fine with the KDM treatment. He tests your poop and gives you monthly cycles of antibiotics and probiotics based on exactly what is found. There is no other doc in Europe who does this.
If you want to PM me I can give you his contact details and more info on the prices.

Oh, and beware of fruit because lots of us cannot absorb fructose (45%) so it is THE WORST type of carb to eat. (For a treat the only two safe fruits are kiwi and pineapple, but only in tiny amounts. Apples and pears are deadly.)

 

[pamb]

Hi Athene,

You are so correct. As I had gone out and bought a bunch of fruit John ate some Thursday evening for a treat - and spent most of the night in the toilet. He is chronically constipated from the narcotics he takes (very long stupid story, but he has been on Subatex (buprehorphine) for 2+ years after getting off too much Oxycodone) so spending the night in toilet with loose bowels was definitely a change.

At the moment we have zero funds and I'm living on credit, hoping a new business finally starts bringing income soon, so we can't go to Belgium. It is pretty frustrating for sure as we spent a lot of money at the Paracelsus in 2006-07 and definitely received help for John, but as he had no idea he had CFS, despite asking several Dr's if it could be that, he kept riding his bike and negated all the possible good done. As soon as things pick up for me - God willing - we can try to book in to see KDM, as that certainly sounds like what John needs.

In the meantime, looks like I'll be eating all the fruit and John has found a teaspoon of honey in he morning goes down well. I got glucose tablets yesterday but the French version are pretty yucky and don't dissolve at all quickly. He chewed one last night, which was NOT the right thing to do. Hopefully he'll get to trying again today when he is feeling a bit more patient.

I'm very, very glad I asked the question here as now we have a short term solution and can plan to see KDM as soon as possible. In the meantime, I'll just dream of the fun of showing it all to John's GP here as the KDM treatment proceeds.

All the best,
Pam and John

 

[pamb]

Hi Athene,

I missed an obvious question: Do you have some kind of contact information for me to call Dr. De Meirleir's office and find out the possibility and cost of getting in to see him, or perhaps someone in his department? I imagine he is just a wee bit busy {smile} It won't happen if I don't start making plans.

PM me if you wish,

Thanks!
Pam

 

[torp]

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 pamb,
Can you tell a little more about the caracter of the smell form the breath of your husband. There is a virus that stimulates the production of bad smelling amines. Try to find an example of a flowering "Stapelia grandiflora" and smell the flower and compare with the breath smell. The smell of the flower is the smell of decaying meat. It could be possible that the bad breath can be connected to a virus infection that can play a role in CFS/ME.

 

[Enid]

I would suggest connected with infections bacterial or viral recalling a similar period too. I did find some relief both in the sinuses and with GI problems following a course of high dose Amoxcillan (serendipity - it was given for infected teeth extractions).