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vitamin d intolerant and other problems, would appreciate any advice

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by cotedor, Aug 17, 2012.

  1. cotedor

    cotedor

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    Hi there,

    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.
     
  2. merylg

    merylg Senior Member

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    http://en.wikipedia.org/wiki/Riboflavin

    http://emedicine.medscape.com/article/125193-overview

    There are some threads on here regarding B2 (Riboflavin). It's a simple approach to try re-building the stores of Riboflavin with low doses spread over the day eg 25mg 3 times a day.
    However...
    it soon places demands on limited stores of manganese... so that and low magnesium are an issue. There can be iron de-tox type issues that happen as iron metabolism starts to improve. So it's good to have help.

    Mucous membranes & gut lining start to heal. Absorption of nutrients starts to improve. Sleep, mood and muscle tendon relaxation improve. Some of this is noticeable after a few days. Other issues are going to take longer. I am interested in the whole area of fat metabolism which seems intricately tied to mitochondrial & liver function.

    I will try and find the links to those threads & add them here.

    http://forums.phoenixrising.me/index.php?threads/hair-mineral-testing.15099/

    http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/
     
  3. freshveggies

    freshveggies Senior Member

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    are you using D3 only?
     
  4. cotedor

    cotedor

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    Yes, I just took d3 alone. Is that bad? I've tried b complexes those are also making me sick.
     
  5. freshveggies

    freshveggies Senior Member

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    Yes D3 is good. Not sure why it made you feel bad
     
  6. Crux

    Crux Senior Member

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    Hi Cotedor;

    There are so many symptoms listed, that it looks like there could be many deficiencies causing problems. Even when the B vitamins are so needed, a B complex seems to worsen symptoms. The condition of your tongue and nerves usually indicates this need.

    Some of the B complexes include alot of HCL to aid absorption, but I think it's too much. I'm sensitive to acids in foods and supplements, so I take smaller amounts of them. I find that New Chapters brand makes a coenzyme B complex, ( food based ), that is less acidic. Although it has much lower amounts of the other B's, it does have alot of folate in it. Unfortunately, it's expensive. ( I buy it from either iherb, or swanson's, online )

    The B12 sublinguals are very effective, but they contain citric acid, which preserves the B12 and helps absorption. Some people are sensitive to the citric acid, so they may do better with injections, at least for a time until tissues heal.

    I suspect that there may also be a deficiency in zinc, because of some of the symptoms listed. ( low testosterone, IBS, bone problems, muscle twitching, etc. When taking zinc, copper should be included . B12 and Folate aid with the metabolism of copper. ( This is how, in part, they help reduce fatigue.)

    Zinc is necessary for vitamin D metabolism, it is involved with forming vitamin D receptors. ( VDR) It may also be helpful with reducing high calcium in the blood. ( I have this problem too, so I'm going to check for this next doc appt.)
     
  7. Dainty

    Dainty Senior Member

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    cotedor,

    My initial onset and severe onset both correlated with several bouts of antibiotics. After my severe onset 6 1/2 years ago I became vitamin D intoelrant. No sunlight exposure, no foods containing it, and definitely no supplementing. It causes a particular kind of severe body-wide intractable pain for me.

    I also have been unable to tolerate fats save for a small amount of coconut oil. Even ground beef withthe fat drained had too much...it had ot be hand trimmed, first.

    I tried every kind of vitmain D supplementation, custom compounded. No matter how tiny a dose I started at, or which form it was in, the result was the same.

    The closest I've come to something that works for my body is raw, unfiltered, fermented cod liver oil. The pain was not quite as bad with that, and in the past I managed to work up to a good dose short term, but couldn't keep it up. Most fish oils have artificial vitamins added back in because the filtering process removes nearly all the original ones. You don't want those. Here is an article explaining the difference in manufacturing process. Here's a link to the stuff I used.

    At the moment, I'm able to tolerate some foods that contain vitamin D again, and a little more fat in my diet. This has been as a result of cranial osteopathy, a neuromusculosekeletal treatment modality adimnistered by my doctor. It turns out I have structural problems interfering with my digestive system, and my doctor has advised that I simply wait until after those are resolved and not try to "force" my body to accept any more vitamin D than it can easily handle in the meantime, even if that means not getting any at all.
     
  8. Ema

    Ema Senior Member

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    Have you tested both 25-OH Vitamin D and the active form, 1,25 D, to make sure that there is not some sort of VDR receptor issue going on? It could be that you don't actually need any more Vit D...

    http://perfecthealthdiet.com/2010/08/vitamin-d-dysregulation-in-chronic-infectious-diseases/

    I think many of us are getting overdosed on Vitamin D believing it is healthy and good for the immune system. This is true, but only if the VDR is working properly and it often does not in inflammatory illness.
     
    alice and Sushi like this.
  9. alice

    alice Senior Member

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    Cotedor and Ema,

    I too react to Vit. D3 supplementation with increased pain. I tolerate supplementing 400 to 600 IU daily but no more. According to my doctor, Vit D acts as an immune modulator and thus acts somewhat like an antibiotic and causes pathogen die-off --( I hope I have this right). Apparently, my body cannot rid itself of the toxins fast enough and I get a herx reaction resulting in a much higher level of pain. So when people say they are taking 10,000 (or 50,000 IU) Vit. D, I cringe with pain just thinking about it.

    My last Vit D 25-OH was 33 (30.0-100.0 ng/mL), up from 12 ng/mL two years ago, so it did improve some, but still low..
    My Vitamin 1,25 dihydroxy is 50 (15 - 75 ng/mL).

    I have just begun with GcMaf and have been told to not supplement with any Vit. D. I do have a VDR receptor issue as Ema mentioned. My doctor feels that the Vit D 25-OH will right itself once the GcMaf takes effect.

    alice
     
  10. fozzaw

    fozzaw

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    If the problem started with antibiotics, you might consider the small number of documented cases where common microbial pathogens of different species have somehow gained the ability to activate vitamin D in humans causing hypercalcemia until the pathogen was eradicated. Uncontrolled activation of vitamin D also common in sarcoidosis, and some prominent sarcoidosis research scientists have pointed at mycobacterial sources for causing sarcoidosis as a strong possibility.
     
    merylg likes this.
  11. cotedor

    cotedor

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    Thank you for all the responses. At one point I did get both d 25 and d 125 checked. I will have to look up the numbers. The d 125 was in range (I think in the middle, will have to look it up) and the d 25 was low. d25 dropped down to 18 and started to go back up seems like when I went in the sun. I've read that from the sun your body will only create enough vitamin d that it needs, so you wont get like an overdose of vitamin d from being in the sun. That makes me think that I do need vitamin d. But for some reason my body can't process the supplements. If I remember correctly from the sun the body uses cholesterol to make the vitamin d. Is that right? I did notice my cholesterol numbers seem to have changed seen the sun exposure.

    I have had every imaging imaginable. The whole thing got significantly worse after taking betaine hcl. Before that the situation wasn't great, but it was "manageable".

    Any idea on the fat loss? I don't have hiv, and anyway that's related to the drug therapy. I briefly saw something about mitochondrial dysfunction. The fat loss, joint pain, and muscle twitching are the most troubling oh and the fact that fat makes me sick. There has to be a connection here. I wish I could find a doctor that can put this together. I've tried so many and they either don't know or say I'm crazy.

    I've tried zinc. I get pain the front of my neck. I think it's my lymph nodes. Not sure what to make of it.

    I really thought the problem was bacteria or yeast. But, even I'm having trouble see how an infection like that would cause a fat wasting syndrome.

    Also if I can get vitamin d ok through sun exposure, but not from ingesting, that has to suggest something, I would think. Kidney issues? But like the doctors keep telling me if the numbers are in range than normal is normal.

    Thanks for your help.
     
  12. triffid113

    triffid113 Day of the Square Peg

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    This is gut feel...How old are you? Do you have low blood pressure?

    If you CAN, I would take olive leaf extract...to kill all kinds of stomach and intestinal pathogens. It lowers blood pressure so if your is already ow you might have a problem with it (I do not know - maybe olive leaf extract just normalizes blood pressure...I would not hesitate unless my b.p. was actually low).

    Look into bio identical hormone replacement if you are over 50 as your hormones fix a lot of things that go wrong. If you are under 50, look into why you have low t (do you have elevated estrogen?). You may need zinc to prevent your testosterone from turning into estrogen. Are you overweight? You may need a doctor to write a prescription for an aromatase inhibitor. I would look into the method I felt most comfortable with to raise my testosterone. I have a lot of broken genes and function ok as long as I have my hormones and pretty much not at all w/o the hormones.

    If you suspect kidney problems - get a Cystatin test. The standard kidney test only shows a problem when your kidneys are already destroyed whereas Cystatin can how problems well in advance. Also you can look at your homocysteine level...if you have kidney trouble your homocysteine will elevate and so will your blood pressure. I am not a doctor but this is what I believe to be true (double check). William Falloon (Life Extension) found his homocysteine was raised despite his methylation supplements so he had a kidney test and found compromised kidney function and investigation showed it was due to takeing tylenol...so have a look at what drugs you are taking and the side-effects also.

    Good luck.

    P.S. How much protein do you eat? dopamine is a super anti-inflammatory. My doc put me on 1g tyrosine a day to make dopamine. I also take 6mg melatonin at night because it is a very strong anti-oxidant - 200x stronger than vitamin E. A melatonin by night and dopamine by day strategy can take down a lot of inflammation
     
    merylg likes this.
  13. cotedor

    cotedor

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    Sorry for the late reply. I don't have low bp, it's pretty much normal. I'm 35. In terms of weight, I'm a male, 5'5, 135 lbs. So no one would say I'm overweight, I look thin as a rail. Except all my fat is going to my abdominal area. Take away the abdominal weight and I would probably be underweight. Some kind of fat redistribution problem. I could try the olive leaf.

    I have some type of glossitis, vertical string like patches on my tongue, where the papillae are gone. I'm thinking inflammation, infection or some type of digestive problem. I don't think I have a vitamin deficiency except for d, at least it didn't show in the labs.

    I don't know why I can't find a doctor who can put this together. Fat loss, fat (food intake) intolerance, vitamin d intolerance (vitamin intolerance in general), some type of atrophic glossitis.

    Thanks for the suggestions especially the kidney tests, I didn't know about the cystatin.
     
  14. rlc

    rlc Senior Member

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    Hi cotedor, I noticed this in what you have written “occasional hypercalcemia” people with hypercalcemia should not take vitamin D because vitamin D causes calcium levels to rise higher making the patient sicker. The question is why are you getting high calcium levels?

    People with primary hyperparathyroidism, sarcoidosis, tuberculosis, oat cell carcinoma of the lung and non-Hodgkin's lymphoma should not take vitamin D because they already have high Calcium caused by these diseases.

    Have you been tested for all these diseases? Hyperparathyroidism is often missed because most doctors don’t understand that patients can have high calcium and normal PTH, it is all explained here http://www.parathyroid.com/diagnosis.htm if you haven’t been tested for any of these diseases get them tested for, it could be the cause of your problems?

    Are you taking any other meds cause some of them can interact badly with Vit D see http://www.druglib.com/activeingredient/vitamin_d3_(cholecalciferol)/

    Hope this helps

    All the best
     
  15. rlc

    rlc Senior Member

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    Hi people with pain from taking vitamin D but who don’t have high calcium, I came across this explanation for it.

    An INCREASE in Pain After Starting Therapy http://www.easy-immune-health.com/vitamin-d-contraindications.html

    An increase in pain symptoms after starting Vitamin D Therapy are not infrequent vitamin d side effects. These vitamin d side effects are often very worrisome and uncomfortable. Many people want to stop vitamin d therapy due to this pain, but that is not a good idea. In fact, the people who need vitamin D the MOST are most often the ones who experience this pain.

    The pain is due to the vitamin d forcing calcium back into demineralized bones. Water is drawn into the bones along with the calcium. This swells the bones very slightly and pushes against the inflexible periosteum. The periosteum has a significant number of pain receptors and this can be experienced as bone pain. For those that already HAVE Pain From Vitamin D Deficiency, the pain can become worse. For those that do not have bone pain already, they can experience bone pain upon first beginning therapy. This bone pain is temporary and should resolve in a few weeks.

    Since the pain is an indication of demineralized bones, stopping therapy will be likely to leave these people with bones that continue to become demineralized- potentially leading to osteoporosis. Understanding why the pain is being experienced and attempting to manage it with pain relievers, relaxation, warm baths, etc. is a better idea.

    Increasing vitamin D levels also brings on the symptoms of any magnesium deficiency that the patient may have and being magnesium deficient stops the patient from absorbing vitamin D, so all they get is all the nasty side effects and the vitamin D deficiency isn’t cured this is explained in this article http://www.naturalnews.com/029195_magnesium_vitamin_D.html

    Symptoms of magnesium deficiency that can be brought on by taking vitamin D are explained here http://www.ancient-minerals.com/magnesium-deficiency/symptoms-signs/

    Other co factors like zinc are needed when taking vitamin D they are explained here http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/

    Hope this helps someone

    All the best



     
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  16. cotedor

    cotedor

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    Hi rlc,

    What you mention in your last thread could be what's going on with me. Every time I start even a low dose of 400 iu, the next day, my jaw will kind crack/snap once or twice and then there is this gritty sound like sand rubbing together. I wonder if what is happening is the opposite of demineralization?? In simple terms, stuff is being put back together and when I move like my jaw I experience these noises and cracks. Could that be a possibility or am I way off?

    The only med I'm taking is a benzo (ativan). I had to start this because the symptoms were just too much to handle and I couldn't sleep for a period of time.

    In the last couple lab tests my calcium levels are back to normal, 9.7. Prior to me being sick it was always 9.7. I tried to explain to the drs that calcium is tightly regulated and should not bounce up and down, they did not believe this. At one point it was ranging from 10.2 to 11. And I believe even though 10.2 was in range (at the end of the range), for my body, this was not right. I have learned through this awful process that these labs are all based on statistics. Everyone is different and I think the doctors are making a big mistake by believing so much in these reference values. I know they have to start with something, but when someone is complaining about symptoms they should throw out the reference values in my opinion and look at things differently.

    I have looked at the parathyroid site a couple times a while back. It didn't seem like a parathyroid problem, but I will check again.

    And yes, I have been tested for all those tests mentioned above.

    The atrophic glossitis on my tongue and the fat loss are such apparent symptoms, yet I can't get help. It's very frustrating.

    Thank you for your help.
     
  17. richvank

    richvank Senior Member

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    Hi, cotedor.

    Have you had a comprehensive diagnostic stool analysis, such as the Metametrix G.I. Function Profile or the Diagnos-Techs Expanded G.I. Panel?

    If not, I would suggest starting there, given the history you have reported:

    1. Extensive use of antibiotics. These likely knocked out beneficial bacteria in your gut flora, producing dysbiosis..
    2. Bloating. This is usually caused by yeast overgrowth, which occurs when there is intestinal bacterial dysbiosis.
    3. Sugar cravings. More evidence for yeast overgrowth.
    4. Benefit from Diflucan. More evidence for yeast overgrowth.
    5. Initial benefit from betaine-HCl. Evidence for low stomach acid.
    6. Later, big problems, presumably from betaine-HCl, but hard to say for sure. Definitely some of the problems are related to the digestive system.
    7. Malabsorption of fats. Again, related to the digestive system. Could be bile insufficiency.

    I think a comprehensive diagnostic stool analysis would be the place to start, if you haven't already run one. The Diagnos-Techs panel requires a doctor's order. The Metametrix profile can be ordered from the internet, without a doctor's order. I think the best price is at YourWaytoWellness.com. It's also available from directlabs.com

    Best regards,

    Rich
     
  18. cotedor

    cotedor

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    I have done a bunch of these tests. The genova test found nothing wrong. The first metametrix test suggested that I had problems with fungus and bacteria. I'd have to go back and look. Indican was high. And some measurement for candida was high. I repeated it again at a later time and then it was normal, except then it said I had a biotin deficiency based on some marker.

    I also did this spectracell testing. Which is supposed to be the latest and greatest type of test. It said I had functional deficiencies in b1, b2, folate, serine, choline, oleic acid. But when I tried to supplement it made me feel sicker. And then the dr proceeds to tell me that he doesn't think this is related to my symptoms after I spent 500 bucks on the test.

    Do you know how to test for bile insufficiency?
     
  19. rlc

    rlc Senior Member

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    Hi cotedor, sorry for the delay replying, I don’t know why your experiencing what you are, but I’m wondering if it is more to do with your inability to tolerate fats, rather than the Vitamin D. The amount of vitamin D you’ve been taking 400 iu is very small, you will get 10,000 iu just by being out in the sun for 20 minutes, so if you’re having no problems being out in the sun then it can’t be the effect of the vitamin D moving calcium into your bones, if Sarcoidosis and parathyroid etc have been ruled out then it’s not the bad effect that vitamin D can have on people with these illnesses.

    The difference between taking vitamin D suppliments and getting it from the sun, is that getting it from the sun bypasses the digestive system. So I feel your problem is somewhere in your digestive system.

    You say you have fat intolerance, this can be caused by many digestive problems such as celiac and bile duct, gall bladder and pancreas problems etc see http://en.diagnosispro.com/differential_diagnosis-for/fatty-food-intolerance/24915-154.html

    Not sure if you have been tested for these kind of things, I’m not a doctor but I’m thinking maybe you have one of these conditions like maybe celiac, bile duct, internal parasite etc which is making you intolerant to fats and you are reacting to the fat soluble vitamin D going through your digestive system.

    Fat intolerance is a well recognised symptom of many illnesses and should lead to your doctor investigating it to find the cause, it is however not a well recognised CFS symptom, although a lot of people do have abdominal problems, which makes me wonder if there is another problem going on.

    Hopefully you can get your doctor to look into the illnesses in the link above and see if there is anything that has not been tested for. Until then keep getting your vitamin D levels up through sun exposure and I wouldn’t take any more in supplement form, until your doctors have worked out the cause of your fat intolerance.

    Hope this helps

    All the best
     
  20. helios

    helios

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    Reading your post there are a number of parallels with me.
    I got CFS after taking tetracycline for acne.
    I had problems with candida, but was put on nyastatin and special limited diet because of many food intolerances. It helped but I never felt as fantastic as you said you did on diflucan. (did your doctor prescribe you that because your naturopath said you had fungal infection??)

    I lost weight.
    I had stomach pain, especially on the lower left side.
    I developed generalized lipodystrophy.
    I could not tolerate vitamin D....however.
    My vitamin D levels were very low and I was prescribed it by my doc. My energy levels went down when I was on it. I was falling asleep at work everyday I took it. I gave up on it after numerous months. Then I had another vit D blood test and my reading had hardly changed, so I went back on it, but this time took it at night, and it actually acted like a sleep aid which was great. I had another vit D blood test and while my reading had improved it was still quite low. I basically had been on a maintenance dose, and after reading a few articles written by cfs doctors, I decided I had to really ramp up the dose to get my levels up prior to backing off at a lower level 'maintenance' dose. At the time my health had deteriorated and I was only working part-time, so I thought I could take a much higher dosage, and it would not matter if I crashed for the day. To my surprise, I found tking 10x the amount did not adversly effect me at all.

    As for tolerating eating fats, I too had a lot of trouble with this for years. In the past couple of years I am much better now in this regard. I'll post more on this in a follow up.
     

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