7 replies to this topic

[Diesel]

Vitamin D supplement (2000 IU) gives me an intense burning sensation in my head accompanied by anhedonia, depression, worsened blunted affect, joint/muscle pain and general physical and mental fatigue. General flu-like symptoms are also present (runny nose, malaise, etc.).

CoQ10, creatine monohydrate, and glutamine also give me a similar reaction. High dose vitamin C also triggers it occasionally.

I suspected having an autoimmune disorder in the past but antinuclear antibody test (ANA) was negative. ESR was slightly elevated but my physician said it wasn't significant. CRP was normal. EEG and MRI are normal. Hormones are normal. My physician doesn't know where to go from here so he simply brushed it off as being psychogenic. My psychiatrist disagrees with him.

The head burning sensation is relieved by benzos and, to some degree, by NAC. Caffeine makes it much, much worse - I avoid it like the plague. Also, I tried Levodopa/Carbidopa in the past for anhedonia, but it gave me an even more INTENSE head burning sensation and the same symptoms as above.

It seems to be related to dopamine, glutamate, immunity and mitochondria. Perhaps even a latent infection. Any ideas on how to proceed from here?

Edited by Diesel, 06 December 2017 - 02:23 AM.

[Dichotohmy]

Even though few doctors will support it, and the science doesn't really either, plenty of autoimmune patients report symptomology even with negative ANA, antibody markers, or objective inflammatory markers like ESR or CRP. Isn't it possible that autoimmune diseases are on a spectrum and that measurable ANA and antibodies only start being noticed when the AI disease is getting quite bad? Off the top of my head, chronic fatigue syndrome, and lyme-type infections and coinfections can have a strange reputation of showing low ESR measurements, even though it's pretty accepted that cytokine abnormalities are present in those conditions. I'm definitely not saying any of this applies to you, but all I'm saying is that sometimes labs are misleading and it can be smart to consider the value of treating according to symptoms. Then again, I know finding a doctor who will go outside the cover-your-ass paradigm and treat symptoms like this is not easy.

 

Why did you supplement with vitamin D? Do you have a measured deficiency? Do you spend enough time outside in the sun? Supplemental Vitamin D makes me feel terrible as well. My labs show around 50 ng/ml for the vitamin D tests.

 

It sounds like you are in a game of hot potato between your GP and psychiatrist, where the GP wants you to go away. I would suggest finding a new GP because it sounds like your current one has made up his or her mind about you.

 

Dopamine, glutamate, the immune system, and mitochondria are related to everything and aren't really specific clues. It seems like you've had the ESR, CRP, and connective-tissue disease tests. Are there any other tests you've had that us knowing about could help us help you? How about endocrine testing? Any abnormalities in the standard CBC and serum tests? Have you been to any specialists? 

 

 

Edited by Dichotohmy, 06 December 2017 - 01:25 PM.

[Diesel]

Why did you supplement with vitamin D? Do you have a measured deficiency? Do you spend enough time outside in the sun? Supplemental Vitamin D makes me feel terrible as well. My labs show around 50 ng/ml for the vitamin D tests.

 

It sounds like you are in a game of hot potato between your GP and psychiatrist, where the GP wants you to go away. I would suggest finding a new GP because it sounds like your current one has made up his or her mind about you.

 

Dopamine, glutamate, the immune system, and mitochondria are related to everything and aren't really specific clues. It seems like you've had the ESR, CRP, and connective-tissue disease tests. Are there any other tests you've had that us knowing about could help us help you? How about endocrine testing? Any abnormalities in the standard CBC and serum tests? Have you been to any specialists? 

I've been trying many supplements to try and tackle my symptoms which the docs failed to address (intense burning sensation in the head, depression, anhedonia, blunted affect, physical and mental fatigue, tremors and inner restlessness, weakness and flu-like symptoms, sleep behavior disorder, and chronic nightmares). I discovered that the aforementioned supplements make my symptoms drastically worse.

I went to a couple of neurologists, many GPs, an endocrinologist, a cardiologist and ~3 psychiatrists over the past 8 years.
Off the top of my head, I did liver function tests, kidney function tests, blood glucose, HbA1c, several CBC, urinalysis, ECG, EEG, echocardiography, MRIs, abdominal ultrasonography, electrolytes level, stool test, thyroid profile, free testosterone, .... and more, are all within normal range.

The only abnormality they found during all those years was dyslipidemia which I'm taking a statin for. They don't know what's up with me. :/

[jack black]

interesting, sometimes when i take various supplements with stimulant activities, I feel warmth in the face, that could be perceived as a precursor of burning sensation. not sure what it means either. I started a topic on this a year ago, but it didn't get much traction.

[Diesel]

interesting, sometimes when i take various supplements with stimulant activities, I feel warmth in the face, that could be perceived as a precursor of burning sensation. not sure what it means either. I started a topic on this a year ago, but it didn't get much traction.

It's extremely frustrating, isn't it? when docs don't know what's happening when your symptoms are overt.

The burning sensation feels as if someone lit my brain on fire. It's very painful. It doesn't affect any other area of my head, just the brain - feels like some sort of a unique headache. I suspected it may be a condition affecting the brain's meninges or maybe its blood vessels but my neuros wouldn't investigate it.

[jack black]

The burning sensation feels as if someone lit my brain on fire. It's very painful. It doesn't affect any other area of my head, just the brain - feels like some sort of a unique headache. I suspected it may be a condition affecting the brain's meninges or maybe its blood vessels but my neuros wouldn't investigate it.
 

 

 

i see, it's different. brain has no pain receptors, i bet it's vessels.

 

not sure if relevant but check this:

https://en.wikipedia...i/Brain_on_Fire

 

supposedly it's on netflix and i'm going to watch it when i find time.
 

[bariotako]

Human   have always lived  with the sun  ,  you are probably a mistake, an abnormality ,  the natural selection didn't do his job with you,

[DJSwarm]

Reversing bacteria-induced vitamin D receptor dysfunction is key to autoimmune disease

JoyceC Waterhouse 1, Thomas H Perez, Paul J Albert

PMID: 19758226 DOI: 10.1111/j.1749-6632.2009.04637.x

Abstract

Vitamin D research is discussed in light of the hypothesis that the lower average levels of vitamin D frequently observed in autoimmune disease are not a sign of deficiency. Instead, it is proposed that the lower levels result from chronic infection with intracellular bacteria that dysregulate vitamin D metabolism by causing vitamin D receptor (VDR) dysfunction within phagocytes.

The VDR dysfunction causes a decline in innate immune function that causes susceptibility to additional infections that contribute to disease progression. Evidence has been accumulating that indicates that a number of autoimmune diseases can be reversed by gradually restoring VDR function with the VDR agonist olmesartan and subinhibitory dosages of certain bacteriostatic antibiotics.

Diseases showing favorable responses to treatment so far include systemic lupus erythematosis, rheumatoid arthritis, scleroderma, sarcoidosis, Sjogren's syndrome, autoimmune thyroid disease, psoriasis, ankylosing spondylitis, Reiter's syndrome, type I and II diabetes mellitus, and uveitis.

Disease reversal using this approach requires limitation of vitamin D in order to avoid contributing to dysfunction of nuclear receptors and subsequent negative consequences for immune and endocrine function. Immunopathological reactions accompanying bacterial cell death require a gradual elimination of pathogens over several years. Practical and theoretical implications are discussed, along with the compatibility of this model with current research.