vitamin d intolerant and other problems, would appreciate any advice

[lint7]

No, nothing..no metabolic changes either. Have you heard of lipodystrophy? I am meeting an expert soon to see if there is a possibility for that. Hope God isn't bcs I am just 32 and I don't want my life to be over that soon.

Yeah I have. I've been thinking it is Acquired Generalized Lipodystrophy for a few years now. I've had a leptin test, which was fine and I don't have any signs of insulin resistance, so at least it hasn't progressed to a terrible stage for me.

I'd be interested to hear the results of your meeting with the specialist.

Have you found that your illness is contagious? i.e., have you spread it to family members or anyone close to you?

 

[CursedChild]

Yeah I have. I've been thinking it is Acquired Generalized Lipodystrophy for a few years now. I've had a leptin test, which was fine and I don't have any signs of insulin resistance, so at least it hasn't progressed to a terrible stage for me.

I'd be interested to hear the results of your meeting with the specialist.

Have you found that your illness is contagious? i.e., have you spread it to family members or anyone close to you?

It's not contagious at all. I mean whatever the disease might be it's 100% not contagious. And Acquired generalised lipodystrophy is definitely not contagious 😅
Have you transmitted it to anyone else?
And, have you lost all you body fat, like a specialist/ doctor has found you "sick" and suggested lipodystrophy?

 

[lint7]

My entire family, most of my friends, and several coworkers are all sick and have moderate to severe fat wasting. I think most of us contracted it as part of the same outbreak, but I'm also fairly certain some of them caught it directly from me. Whatever I have is highly contagious and causes serious fat loss and rapid aging of the skin.

I still have body fat on my torso and lower part of my face, but basically everywhere else it is almost totally gone. I haven't been able to get a doctor to refer me to a lipodystrophy specialist. None of the doctors I've seen think there is anything wrong with me. One referred me to a dietician, but that's it.

 

[Pyrrhus]

My entire family, most of my friends, and several coworkers are all sick and have moderate to severe fat wasting. I think most of us contracted it as part of the same outbreak, but I'm also fairly certain some of them caught it directly from me. Whatever I have is highly contagious and causes serious fat loss and rapid aging of the skin.

I still have body fat on my torso and lower part of my face, but basically everywhere else it is almost totally gone. I haven't been able to get a doctor to refer me to a lipodystrophy specialist. None of the doctors I've seen think there is anything wrong with me. One referred me to a dietician, but that's it.

Very interesting.

Are you sure it's loss of adipose tissue and not loss of subcutaneous collagen?

I know that some infections can lead to loss of subcutaneous collagen, but loss of adipose tissue is new to me...

 

[lint7]

It is a loss of subcutaneous fat, collagen and elastin (note: this is my opinion, unconfirmed by any test results). I have lost skin elasticity, had a massive increase in wrinkling, and loss of fat across most of my body.

As far as I can tell it is not a typical presentation for Acquired Generalized Lipodystrophy. Fat loss plus rapid aging is more consistent with Werner Syndrome, a form of progeria. Werner Syndrome is usually congenital and a result of a specific gene mutation, but some cases are idiopathic.

I imagine it is a pathogen without a cell wall inside the fat cells, or it's a pathogen that "looks like" fat/collagen/elastin to the immune system.

I am sensitive to the same foods (and alcohol) that should be avoided when someone has pancreatitis. When I eat fatty foods, sugar, lots of carbs, or drink alcohol I get pain in my face and lose fat. I also suffered from something like hepatitis for the first nine months with symptoms of cholangitis. This makes me think the pathogen has some involvement in the pancreas/liver/gallbladder.

Any ideas are welcome. I'm having a tough time, especially watching my family go downhill.

 

[CursedChild]

Very interesting.

Are you sure it's loss of adipose tissue and not loss of subcutaneous collagen?

I know that some infections can lead to loss of subcutaneous collagen, but loss of adipose tissue is new to me...

Unfortunately it's true. It can happen. I don't know if this what happened with this woman and her family, but this is how Acquired generalised lipodystrophy can occur with late onset.
I am in the middle of investigating if I have the same.

 

[CursedChild]

It is a loss of subcutaneous fat, collagen and elastin (note: this is my opinion, unconfirmed by any test results). I have lost skin elasticity, had a massive increase in wrinkling, and loss of fat across most of my body.

As far as I can tell it is not a typical presentation for Acquired Generalized Lipodystrophy. Fat loss plus rapid aging is more consistent with Werner Syndrome, a form of progeria. Werner Syndrome is usually congenital and a result of a specific gene mutation, but some cases are idiopathic.

I imagine it is a pathogen without a cell wall inside the fat cells, or it's a pathogen that "looks like" fat/collagen/elastin to the immune system.

I am sensitive to the same foods (and alcohol) that should be avoided when someone has pancreatitis. When I eat fatty foods, sugar, lots of carbs, or drink alcohol I get pain in my face and lose fat. I also suffered from something like hepatitis for the first nine months with symptoms of cholangitis. This makes me think the pathogen has some involvement in the pancreas/liver/gallbladder.

Any ideas are welcome. I'm having a tough time, especially watching my family go downhill.

If your family has it, maybe you were victims of a poisoning? Were there people outside your family sick? What is your common factor? Maybe the water? Local food?
What are you describing in a big number of patients is more like that..

 

[lint7]

Family, friends, coworkers. It's definitely a contagious pathogen, and we all seem to still be contagious many years after getting sick.

 

[CursedChild]

Family, friends, coworkers. It's definitely a contagious pathogen, and we all seem to still be contagious many years after getting sick.

So how they haven't detained you yet? And why the rest of the world hasn't been informed yet? I am asking as I am curious bcs if this is indeed the case, everyone is in danger.

 

[lint7]

Detained? No one believes that we're sick. Just like with most CFS patients we're told it's in our heads. They can't find anything on blood tests, so to them it doesn't exist.

I've wasted away over the past six years and my doctor says it's just "fat redistribution" and I'm "getting older".

 

[helios]

Is Vitamin D intolerance common in CFS?

Only ever since starting 2000IU a few weeks ago I've had a low mood which is out of character for me, and my first major flare up since 2012 ( no energy, swollen glands, petechiae etc.).

The thing is, it's stopped my hair loss, reduced the inflammation in my ears and massively helped my insomnia which had been v. severe for the past few years, so I'm reluctant to stop taking it now that I'm finally sleeping better. I've tried reducing the dose too but the minute I did that the insomnia got worse again.

I feel like I've traded feeling rubbish at night for feeling rubbish in the day.

I could only stand taking vit-D at night because otherwise I was falling asleep at my desk and soo brain fogged. I could sleep the night away while presumably incurring the same. what time of day are you taking your D?
I too found it lowered my mood, but not so much that issue when I spent time out in the sun, though in fact I do definitely feel more mentally positive on the overcast days and in winter. It is really frustrating reading the stories of others who try Vit-D and it find it a game changer. The last time I took high dose vit D I also took high dose vit K, (both at night) and again suffered from bad brain fog and ADD which I could only ameliorate by fasting. I had to stop it after a number of weeks and recovery was slow but the other interesting aspect was I then got a series of colds. I had 7 colds that year where as normally I get a cold once every 5 yrs, so it defintely ramped up my immune system. Reacting to colds to me means a more activated immunity rather than a compromised immune system. If my health stepped up a notch after each cold epsiode maybe as it dealt with past dormant cold infections then I would keep on with it but it didn't alas.

 

[JoeyJo]

I could only stand taking vit-D at night because otherwise I was falling asleep at my desk and soo brain fogged.

That's a good point, I must try taking it at night for a longer period of time to see what impact it has. I think I've taken it at night occasionally with no adverse effect on my sleep, but it always feels like I'm going against nature in doing so. Interesting that you mention brain fog as I think mine has increased since taking it too, so hopefully taking it in the PM will help that as well.

 

[gbells]

But, I can get vitamin d from the sun and don't get these symptoms.

I recall reading that our bodies regulate sun generated vit D3 well without overdosing but with supplements you lose that control and have to get the dose right. I get little sun and take 2000 iu once per week (2x dose for suspected covid twice a week for immunomodulation). There is no need to dose vitamin D3 daily as it is a fat soluble vitamin and is stored. You could try reducing your dose and noticing what gives you symptoms. But check periodically with your doctor to have some labs run to get a definite idea.

 

[Pyrrhus]

I had 7 colds that year where as normally I get a cold once every 5 yrs, so it defintely ramped up my immune system. Reacting to colds to me means a more activated immunity rather than a compromised immune system.

Smart thinking!