vitamin d intolerant and other problems, would appreciate any advice

[place]

Cote'dor, don't have any advice but love the name. I remember that name as Belgium chocolate brand, supper market kind. But I loved it, always restocked my chocolate reserves each year with a lot of their stuff.

 

[Asklipia]

Cotedor, I am sorry you are experiencing all these problems.
I don't know if you are aware that vitamin D problems can be a consequence of a vitamin K deficiency.
Antibiotics induce vitamin K deficiency.
Take a look at this :
http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/page-27#post-287924
and the rest of that thread. Also I wrote a few posts on the vitamin K thread :
http://forums.phoenixrising.me/index.php?threads/has-vitamin-k-2-mk-4-or-mk7-helped-you.15605/
Be well!
Lots of good wishes,
Asklipia
FFP

 

[bedman]

I too do not tolerate Vitamin D anymore, not even 500 IU. Some time ago 3000 IU were no problem. Sunlight is fine, so it must indeed be a reaction of the digestive system. Im thinking about a topical supplementaion (if there is any).

 

[Rachel B]

Cotedor, I can see this is a very old string, but I found it when I was googling the topic. I have many similar issues and wonder if you are still having them. I see a doctor (Alexander Shikhman) in San Diego who is an MD, a rheumatologist, and can really think outside the box on things like this. He has been very helpful for me and has a grasp on this that is excellent. If you are still having these issues, I would strongly recommend that you see him. If you don't live nearby, perhaps you should consider some medical tourism.

 

[bart32]

I am also experiencing severe fat loss. I was diagnosed with CFS 9 years ago. After a few years I got better, although I never fully recovered. In February-March thus year suddenly everything got worse again. I got some skin boils, which seems to be due to a streptococcus infection (elevated ASO titer 800). It was treated with antibiotics but a few weeks later the boils came back. And in a few days I lost a lot of subcutaneous fat, throughout my entire body (face, arms, palms and fingers, trunk, buttocks, legs, feet soles, literally everywhere). Also lost weight, but that came back. The fat however did not. And there seems to be some fat redistribution now, to breasts and abdomen. Blood tests don't reveal any auto immune problems. All values normal except for vitamin D which was first at 15. I took supplements for 1 month and then it was at 30. Uric acid slightly elevated. Besides that troubling glucose level, which puts me suddenly in a prediabetic state (I never had any problems with that, this might be connected to the fat loss). My doctor has never seen anything like this. He has referred me to an immunologist who I will see in a week. I did some research myself, the only thing that's seems plausible for now is Lawrence-Seip syndrome, which is acquired general lipodistrophy. Although very rare, it seems to be the only condition matching what I am experiencing now. Feeling depressed and overwhelmed by this sudden and complete change in life....

 

[sick2long]

Hi there, Boy you sound like me. I have been sick for 23 years. I see your post is older. Has anyone diagnosed you yet? I have been hospitalized poked prodded for years. Had abdominal exploratory surgery, nerve biopsies, muscle biopsies, intestinal biopsies. You name it Ive had it.
I am now exploring the possibility that i have been misdiagnosed with lyme disease and in fact may have Sarcoidosis.
I could not help but notice just about every symptom you had I had seen on researching Sarcoidosis. I am going to a pulmonologist next because since this disease began I have had wheezing in my lungs and have difficulty walking, going up stairs and just about any other exertion. I too have cracking in my joints especially my mid spine, neck and jaw. I started my disease with a thick coating on my tongue which I know now was candida. The only drug the lyme doctor gave me that got me out of a hospital bed was diflucan. I reached a point when that did its job but the numbness in nerves and muscle weakness, the bloating after eating and inability to drink milk persists. I have recently been taking calcium with D3 and have been getting worse. I have read that with sarcoid you can not tolerate vitamin d. Do you have any lung symptoms? I am totally disabled and can barely due things around the house.
Let me know if you have a diagnosis yet. Thanks very much.

I really need some advice/help. I'm in big trouble. I'll try to keep it short. Had chronic fatigue for years, 10+ hours of sleep everyday, tired all day long, difficulty concentrating, memory problems, sugar cravings, joint stiffness, digestive issues, stomach bloating, tired after eating, sensitive to alcohol.

Prior to this was on years of antibiotics (minocycline, tetracycline, amoxycillin) to treat acne. Rounds and rounds of antibiotics given by doctors who didn't know what they were doing.

Naturopath concluded I had a problem with candida. Went on diflucan. Saw improvement in aches and pains, but fatigue and other issues were still there. But, did see improvement. I could not get off the diflucan. If I went off the diflucan the symptoms would come right back. Stayed on diflucan for several months.

Another naturopath said my problems were related to digestion and I should try betaine hcl. This is when the problems went from mild to down right dehibilitating. For the first 10 days on betaine I felt great. Felt like I was 18 again. Energy was up, concentration was good, didn't need as much sleep, cravings were gone.

But then something went terribly wrong. I developed stomach pain and started losing weight. I didn't realize it at the time but I went from 135 to 120lbs. over one month time. I developed all kinds of pain. Nerve pain, stinging pain that would come and go, pain in the stomach, my muscles started twitching all the time, muscle pain, joint stiffness, joint cracking. I was in bed for many months. It has been very scary.

The drs found inflamed abdominal lymph nodes, occasional hypercalcemia, abnormal emgs suggesting nerve irritatation, elevated csf protein suggesting an inflammatory process. I saw neurologists, endocrinologists, rheumatologists, gastroenterologists. I had all the work ups. They don't know what wrong with me.

My current situation is: I have lost most of my body fat, arms, legs, hands, feet, it's like a generalized lipodystrophy. I cannot tolerate vitamin d. 400 IUs of vitamin d cause me to have body pains and blurry vision. Vitamin d causes my egfr numbers to go down slightly, my uric acid to go up, my BUN to go down. That to me sounds like kidney problems. But, I can get vitamin d from the sun and don't get these symptoms.

My joints ache, I have nerve compression problems from fat loss, I have lost much of my fat padding (didn't even know I had this until it was gone), I have what looks like glossitis on my tongue, like papillae atrophy, and vertical grooves on the sides of my tongue.

I've lost fat. I cannot tolerate eating fat, good fats, bad fats, fish oil, cod liver oil, olive oil etc. It makes me sick. Vitamin d is fat soluble, there has to be some connection here. Dr had me try flagyl. The next day my whole body was in pain, could not continue it. I'm losing 6g/fat a day in stool, GI says its fine cause it's in range. My testosterone is low, but endocrine says this is secondary, there's something else going on. I'm developing osteopenia in the spine, the discs in my neck are degenerating. It's a disaster. My muscles continue to twitch and I cannot find a pattern or trigger. They have ruled out ALS and MS by multiple neuros.

Is it an infection, the candida, kidneys, liver? I would appreciate any ideas, the doctors don't know, some say I'm crazy, and most don't really care. I need to try something.

Thanks for listening to my story.

 

[lint7]

Digging up this old thread. I am suffering from very similar fat loss symptoms as others in this thread. If anyone is still on the forum, can you give us an update on your condition? Have you been diagnosed with anything else, and have any treatments worked?

 

[JoeyJo]

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.

 

[Pyrrhus]

Is Vitamin D intolerance common in CFS?

Many people report that vitamin D significantly worsens their symptoms.

Other people take it everyday and report benefits.

Boosting an inadequate level of vitamin D would boost the immune system. Sometimes that's a good thing and sometimes not.

Hope this helps.

 

[Mouse girl]

If you can get outside, the best way to get Vit D is from the sun. Even a few minutes can help. See what you can tolerate sunshine wise and don't overdo it, of course. I could never tolerate Vit D and when I was sicker, being in the sun too much wore me out terribly. Now, if it's hot, I get worn out but a bit of sun does me good. EVeryone is different though. Hope you find something that helps.

 

[JoeyJo]

Thank you so much for confirming that @Pyrrhus. I couldn't find information on it anywhere apart from this thread and was beginining to think that it was all in my head or being caused by something else. Apparently my Vitamin D levels are within range, but the fact that my hair stops falling out when I take the supplements makes me think I'm not absorbing/using it properly.

Thanks for the suggestion @Mouse girl. I absolutely love being outside in the sunshine and it doesn't seem to make my symptoms worse the way that a hot bath does. Unfortunately, it doesn't seem to help the way that supplements do either as I spent 5 months in SE Asia last year and the insomnia and hair loss was terrible.

 

[uglevod]

Boosting an inadequate level of vitamin D would boost the immune system

Not in the case of M. leprae https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6177120/

. I could never tolerate Vit D and when I was sicker, being in the sun too much wore me out terribly.

Its a typical Herx reaction. And the reason is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821804/

 

[CursedChild]

Digging up this old thread. I am suffering from very similar fat loss symptoms as others in this thread. If anyone is still on the forum, can you give us an update on your condition? Have you been diagnosed with anything else, and have any treatments worked?

The same, I am losing fat. Have they found d what's wrong with u?

 

[Mouse girl]

When I was in the early years of the illnss and was very ill, I lost alot of wieght and I was not overweight at all when I was healthy. I found that I needed to eat loads of fleshy protein everyday and to eat lots of fat. It made me feel better to eat this way and I could barely tolerate any grains or high sugar content foods. I couldn't even tolerate fruit and just a bit of brown rice but it needed to be eaten with protein and fat. I also had loads of food allergies and sensitivities. As I got stronger, I could eat lots more food and could tolerate sugar. Eating full fat foods helped me put on some weight as I got stronger too, but it took time, a long time. Just in case that helps anyone. I was never diagnosed with anything else but CFIDS (what they called ME back then) and some docs thought I had fibro too. I was very very ill, had so many horrific symptoms, I can forget what all of them were and are even today and I was disabled but could still walk and except for the really bad years, I could pass for being well. I've never returned to any type of real health but compared to those who are truely bedridden, I've done ok. I'm considered "Moderately ill" but ME standards but by medical standards, I would be considered to be severely ill since my life and health are limited in every way every day. Just another note. I also got sick before the internet so there was more acurate info back then on the illness. It is my nature to ignore symptoms as much as I can and also not having the internet to see that the symptoms can be for most anything was helpful. I used to joke that if my arm feel off, I would just think: "oh, just another thing from this stupid illness" and pick the arm up and move on. I'm glad I didn't get sick during this age of misinformation and endless lists of what dire thing might happen, because i think it makes it more stressful to try and navigate the illness or what to do.

 

[Howard]

This may or may not have anything to do with what you are experiencing, but here's what happened to me.

Back in 2014 and 2015 my Vitamin D levels were in the upper teens. Very low. I had a very poor reaction to vitamin D supplementation, but I don't recall exactly what those reactions were.. and that was during my severe brain fog phase (also, my high sensitivity to sound, light, and practically any other physical or mental stimuli).

So we ended up purchasing a UVB light as an alternate means to increase vitamin D (I am bed bound 24/7, unable to go outside to absorb direct sunlight).

It took three years, but I was gradually able to increase my D level into the low 40s range. And along with several other simple life changes, my energy has gradually increased as well.

I cannot, however, directly attribute my increased energy and decreased PEM specifically to my vitamin D increase, but perhaps it helped.

*I did experience terrible leg cramps after I briefly restarted oral vitamin D3 last year. Someone explained to me that it could be a magnesium deficiency causing this reaction, but I'm not sure they sure how all that works. As I understand it, vitamin D should be taken in conjunction with magnesium, or perhaps not, I'm sure someone else knows how this works. So by all means, please do not follow my suggestion without doing your own research.

H

 

[lint7]

The same, I am losing fat. Have they found d what's wrong with u?

I'm still working on it. It has been difficult to continue testing due to the pandemic.

Have you had any abnormal test results?

 

[lint7]

This may or may not have anything to do with what you are experiencing, but here's what happened to me.

Back in 2014 and 2015 my Vitamin D levels were in the upper teens. Very low. I had a very poor reaction to vitamin D supplementation, but I don't recall exactly what those reactions were.. and that was during my severe brain fog phase (also, my high sensitivity to sound, light, and practically any other physical or mental stimuli).

So we ended up purchasing a UVB light as an alternate means to increase vitamin D (I am bed bound 24/7, unable to go outside to absorb direct sunlight).

It took three years, but I was gradually able to increase my D level into the low 40s range. And along with several other simple life changes, my energy has gradually increased as well.

I cannot, however, directly attribute my increased energy and decreased PEM specifically to my vitamin D increase, but perhaps it helped.

*I did experience terrible leg cramps after I briefly restarted oral vitamin D3 last year. Someone explained to me that it could be a magnesium deficiency causing this reaction, but I'm not sure they sure how all that works. As I understand it, vitamin D should be taken in conjunction with magnesium, or perhaps not, I'm sure someone else knows how this works. So by all means, please do not follow my suggestion without doing your own research.

H

How do you get PEM when you're bedbound 24/7?

 

[Howard]

How do you get PEM when you're bedbound 24/7?

Depending upon any number of factors, any particular briefly sustained movement (muscle usage or physical pressure placed upon my muscles) causes some degree of exhaustion 10-20 minutes after the fact. Duration is between minutes and one full day.. severity varies greatly.

Sometimes I can play a virtual piano on my tablet for a few minutes without any lasting side effects. Other times, I have to rest afterwards for up to an hour. Recovery time varies, as well..

 

[CursedChild]

I'm still working on it. It has been difficult to continue testing due to the pandemic.

Have you had any abnormal test results?

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.

 

[lint7]

Depending upon any number of factors, any particular briefly sustained movement (muscle usage or physical pressure placed upon my muscles) causes some degree of exhaustion 10-20 minutes after the fact. Duration is between minutes and one full day.. severity varies greatly.

Sometimes I can play a virtual piano on my tablet for a few minutes without any lasting side effects. Other times, I have to rest afterwards for up to an hour. Recovery time varies, as well..

That's rough. Sorry to hear you are in such bad shape.