Health Problems Taken A Weird Turn For The Worse

[SB4]

@thomas00 Since you mention you have CFS then perhaps a high carb diet is not so good for you. It appears something is going wrong in glucose oxidation in a significant subset of people with CFS. I don't do well with any type of carbs due to these symptoms and it seems quite a few others are the same.

Did you notice a downturn when you started "peating"?

 

[tankasnowgod]

Looking at your thread, I get the feeling the main issue is that you simply aren't getting enough nutrition or calories. The IBS, Fatigue and such certainly point to that idea. I didn't see you mention being to heavy or wanting to lose weight at all, and you mention a sort of "fast and binge" kind of eating pattern. If the IBS is indicative of some digestive issue, then it would make sense that you weren't getting enough nutrition, even if you think you're eating enough.

EDIT- I did notice you say that you are gaining weight easily just now. But you also mention bloating, so it could be water weight. Based on the lower urea number, I'm guessing that you don't eat a lot of protein. You really probably should run your normal eating pattern through cronometer or something, and see if your caloric level matches what your weight and activity level.

This also makes sense as to why the pro metabolic substances you mentioned at the beginning of your post seemed to help for a bit, then made things worse. They were likely inducing a stress response if you simply didn't have the energy.

Given that, I wouldn't think you'd want to do any sort of restrictive dieting. The only foods to avoid would be ones that cause obvious digestive issues, and the problematic foods we know about. Obviously avoid PUFA as much as possible. If you are eating bread and pasta, look for stuff that isn't fortified with iron. That's probably the biggest gut irritant.

If you have digestive issues, digestive enzymes might be a help. Also something like the Impower Amino Acid supplement might be helpful for rebuilding yourself, on top of your diet.

 

[thomas00]

@thomas00 Since you mention you have CFS then perhaps a high carb diet is not so good for you. It appears something is going wrong in glucose oxidation in a significant subset of people with CFS. I don't do well with any type of carbs due to these symptoms and it seems quite a few others are the same.

Did you notice a downturn when you started "peating"?

I think switching my diet to more milk, cheese, juice etc might have caused a bit more weight gain but apart from that I don't think it made anything else worse.

 

[thomas00]

Looking at your thread, I get the feeling the main issue is that you simply aren't getting enough nutrition or calories. The IBS, Fatigue and such certainly point to that idea. I didn't see you mention being to heavy or wanting to lose weight at all, and you mention a sort of "fast and binge" kind of eating pattern. If the IBS is indicative of some digestive issue, then it would make sense that you weren't getting enough nutrition, even if you think you're eating enough.

EDIT- I did notice you say that you are gaining weight easily just now. But you also mention bloating, so it could be water weight. Based on the lower urea number, I'm guessing that you don't eat a lot of protein. You really probably should run your normal eating pattern through cronometer or something, and see if your caloric level matches what your weight and activity level.

This also makes sense as to why the pro metabolic substances you mentioned at the beginning of your post seemed to help for a bit, then made things worse. They were likely inducing a stress response if you simply didn't have the energy.

Given that, I wouldn't think you'd want to do any sort of restrictive dieting. The only foods to avoid would be ones that cause obvious digestive issues, and the problematic foods we know about. Obviously avoid PUFA as much as possible. If you are eating bread and pasta, look for stuff that isn't fortified with iron. That's probably the biggest gut irritant.

If you have digestive issues, digestive enzymes might be a help. Also something like the Impower Amino Acid supplement might be helpful for rebuilding yourself, on top of your diet.

I've often wondered if I'm malabsorbing things. I haven't used cronometer but I would be really surprised if I'm not eating enough, though it's still possible.

Out of desperation I've started taking a lot more cyproheptadine. Normally the appetite stimulation would make more than 2mg a day a real problem, with the nausea 10mg per day isn't affecting my appetite at all. I felt my feet and hands warm up after taking t3 today, instead of going stony cold. I notice someone on one of the cyproheptadine threads say they had a carcinoid tumor....

 

[tankasnowgod]

I haven't used cronometer but I would be really surprised if I'm not eating enough, though it's still possible.

Well, that's the point of tracking a for, say a week. You can get new insight. I think Tara mentioned the same thing and your response seemed to be similar, like it couldn't possibly be part of or the problem, even though your symptoms and eating patterns strongly suggest you could be under eating.[/QUOTE]

 

[thomas00]

I really don't think it's the issue. None of my symptoms are suggestive of malnutrition. I'm cold, bloated, depressed, tired and have gained a considerable amount of weight. I don't feel any better on days I eat more compared to days when I eat less, either. It's no possible to be malnourished eating what I eat everyday, unless there was some kind of really significant malabsorption.

I started on penicillin VK this week. I felt relief from a lot of these symptoms and a sharp improvement in my mood and energy. It only lasted for two days, similar to the cephalexin.

 

[tankasnowgod]

I really don't think it's the issue. None of my symptoms are suggestive of malnutrition. I'm cold, bloated, depressed, tired and have gained a considerable amount of weight. I don't feel any better on days I eat more compared to days when I eat less, either. It's no possible to be malnourished eating what I eat everyday, unless there was some kind of really significant malabsorption.

I started on penicillin VK this week. I felt relief from a lot of these symptoms and a sharp improvement in my mood and energy. It only lasted for two days, similar to the cephalexin.

None? Cold, bloated, depressed and tired can all be suggestive of malnutrition. That's 4 out of 5 you just listed.

Also, I don't think it would simply be something you would feel day to day. It might take a few weeks to feel a difference if you increased caloric intake.

 

[thomas00]

So I added in some t4 a few nights ago.

Within an hour I was warm and mood went from train wreck to pretty good. I think my t3 only regime caught up with me and was not doing me any favours, even though I only ever used little bits in the day. I think it caused my hypothyrodism to get 100 times worse and that's what was going on. It's only been 3 days but I've been consistently warm and my mood has been better. The chronic nausea is gone. I haven't had a number of days feeling like that in a row for a long time.

I don't know what I will do when the ill effects of t4 supplementation catch up with me though. In the past it has caused heart palpitations, fatigue and sped my bowels up, even on very small doses (6mcg per day). I guess it will be something I have to tackle instead of resorting to t3 only.


Thanks to anyone who gave me suggestions for this. Hopefully I won't be back here bothering you for more of them in the near future.

 

[thomas00]

Adding in t4 to help my woes did not last long. I am back to chronic nausea, really bad distension, extreme fatigue, freezing cold and feeling very lousy and dysfunctional.

I cannot work out what is going on. Things which used to have a pronounced effect on me only do so if I take them in miniscule amounts, and they only work for a short time- small amounts of cascara, 1mcg of t3, 0.5mg of cypro. I take them intermittently. I've been weeks taking nothing to see if that helped.

I am wondering if there is something wrong with my liver. The only things of note I was doing before this happened was short term use of minocycline and use of fairly large amounts of vitamin A, topically. My liver function tests were normal though.

Diet alterations don't seem to bring anything positive, though eating things I know are bad for me makes things considerably worse.


Does anybody have any ideas before I freeze to death?

 

[Taotatoes]

Do you have a family history of rheumatic or thyroid disorder? Are you in the position to pursue more extensive autoimmune testing? Given that it's something you've dealt with chronically for over 20 years and affects you systemically that'd be my suggestion. Lots of autoimmune diseases (even hypothyroidism) can be serum negative, so pushing to see a rheumy and/or endocrinologist is a good idea (that is if you haven't already - then see new ones).

 

[thomas00]

Both my parents were never in great health. My mum was anemic and diabetic when she was pregnant with me. They've both developed chronic health problems. Same with my sibling.

Do you think there is much that either of those two types of docs could offer me? I'm off to see a neurologist next week.

 

[EIRE24]

Unfortunately it was short lived and I am back in the land of chronic nausea, bloating, fatigue and apathy.

You know I actually suffer with the exact same things and had an endoscopy done. Turns out I had a stomach ulcer. Maybe thats what you have also?

 

[thomas00]

Could be. How did they treat your ulcer?

 

[dreamcatcher]

I feel like all foods are problematic. Some are just far worse for me than others. Feels like an endless battle.

Why don't you take a 180° approach when it comes to the foods you're eating?

 

[postman]

@thomas00 Since you mention you have CFS then perhaps a high carb diet is not so good for you. It appears something is going wrong in glucose oxidation in a significant subset of people with CFS. I don't do well with any type of carbs due to these symptoms and it seems quite a few others are the same.

Did you notice a downturn when you started "peating"?

Do you have CFS and are you eating a low carb diet? How do you feel on it?

 

[SB4]

Do you have CFS and are you eating a low carb diet? How do you feel on it?

I am eating around 50-100g carbs per day with an important caveat, I eat with MCT oil. If I do this, I can keep my symptoms reduced to the level they are with lower carbs <50g.

My symptoms get worse like clock work post carbs. 30 - 240mins I get symptoms that peak around 60-90 mins. Pretty much inline with BG. I have tried all different types of carbs but same symptoms. I don't think it is gut flora related for multiple reasons one of which is the MCT oil hack.

Basically, there is some research showing impaired glucose metabolism in CFS with particular interest in Pyruvate Dehydrogenase. There is a study of healthy people showing BHB levels increased upon a high carb meal with MCT oil. You should expect a decrease. This means that the liver is seeing so much Acetyl CoA that it is converting it to BHB. If you have lots of Acetyl Coa in your system, you don't need much PDH use.

This was the theory anyway but in practice it worked. People on PhoenixRising.me have also have success with other things that increase PDH like DCA, ALA, Thiamine, Mg. Just today a paper came out about this here.

I have CFS in the sense that my onset was infection (tonsilitus, slow decline) and that I share many of the symptoms (POTS) however I do not get PEM. My main symptoms are heart based. Heart pounding is my worst symptom (different to racing), I also get lactic acid build up super quick, which for me is more evidence for this. Anyway these symptoms alert me pretty soon to thing that help vs harm so there is benefit there I suppose.

 

[postman]

I am eating around 50-100g carbs per day with an important caveat, I eat with MCT oil. If I do this, I can keep my symptoms reduced to the level they are with lower carbs <50g.

My symptoms get worse like clock work post carbs. 30 - 240mins I get symptoms that peak around 60-90 mins. Pretty much inline with BG. I have tried all different types of carbs but same symptoms. I don't think it is gut flora related for multiple reasons one of which is the MCT oil hack.

Basically, there is some research showing impaired glucose metabolism in CFS with particular interest in Pyruvate Dehydrogenase. There is a study of healthy people showing BHB levels increased upon a high carb meal with MCT oil. You should expect a decrease. This means that the liver is seeing so much Acetyl CoA that it is converting it to BHB. If you have lots of Acetyl Coa in your system, you don't need much PDH use.

This was the theory anyway but in practice it worked. People on PhoenixRising.me have also have success with other things that increase PDH like DCA, ALA, Thiamine, Mg. Just today a paper came out about this here.

I have CFS in the sense that my onset was infection (tonsilitus, slow decline) and that I share many of the symptoms (POTS) however I do not get PEM. My main symptoms are heart based. Heart pounding is my worst symptom (different to racing), I also get lactic acid build up super quick, which for me is more evidence for this. Anyway these symptoms alert me pretty soon to thing that help vs harm so there is benefit there I suppose.

Very interesting, thanks for replying.

Why wouldn't BHB levels increase with MCT oil? Isn't that the whole point of MCT oil? That medium chain triglycerides go directly to the liver and gets converted to BHB. Is PDH involved in producing BHB?

Have you ever tried a ketogenic diet btw? Have you tried BHB-salts?

 

[thomas00]

Why don't you take a 180° approach when it comes to the foods you're eating?

Like eat McDonalds everyday? Kinda sounds good given my fatigue levels...

After more than a decade on all sorts of exclusionary diets with only minor improvements at the expense of a lot of stress, I find it pretty hard to deprive myself of anything anymore. Even when it might be necessary now.

I'm a bit skeptical it's anything dietary though. I've had all these newish symptoms (nausea,extreme cold, extreme fatigue) go away momentarily with antibiotics on two occasions now.

That being said, if I eat eggs I go cold and get super nauseous soon after. That's why I wondered if I've overdone it with the vitamin A.

 

[EIRE24]

Could be. How did they treat your ulcer?

They gave me a PPI but it made me much worse. After doing some research I have switched over to famotidine as people have recommended on here. I still have most of my symptoms and feel absolutely awful 90% of the time. Just all your symptoms are the same as mine.

 

[thomas00]

have you been tested for H.Pylori?