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Kombuchababy

Clinton, ME

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#1
Jan 8, 2011
 
I absolutely cannot take D supplements of ANY kind. I've tried them all. D causes all my symptoms to go WILD. I since learned that D is not a vitamin at all, it is a secosteroid! This means that it is immunosupressive.Any kind of steroid makes the Lyme bacteria and any other PROLIFERATE. Still looking for answers... The pop medical culture would have you believe that a negative reaction to D is IMPOSSIBLE. They are wrong. Any experiences with this? I'd love to hear from you.
Leigha

Scottsdale, AZ

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#2
Jan 27, 2011
 
Kombuchababy wrote:
I absolutely cannot take D supplements of ANY kind. I've tried them all. D causes all my symptoms to go WILD. I since learned that D is not a vitamin at all, it is a secosteroid! This means that it is immunosupressive.Any kind of steroid makes the Lyme bacteria and any other PROLIFERATE. Still looking for answers... The pop medical culture would have you believe that a negative reaction to D is IMPOSSIBLE. They are wrong. Any experiences with this? I'd love to hear from you.
Hello, Yes!!!!!!! I get sick as a dog from Vitamin d supplements. I just figured I was a freak. But now I see Im not alone here. I have Hashimotos an auto immune thyroid disease. I am extremely low in vitamin D so when I try to take it I become extremely lathargic, I get muscle aches. Also it is the same with fish oil supplements. Thanks for your post!
Kombuchababy

Hinesburg, VT

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#3
Jan 29, 2011
 
I can't tell you how happy I was to hear from you. What's interesting is that I have just done a radioactive thyroid uptake scan (last Thurs) to evaluate a possible nodule. My symptoms are: DRY THIN WRINKLY SKIN, FATIGUE, MUSCLE AND BONE PAIN, HEART PALP, TENDONITIS ESPECIALLY BOTTOMS FEET, HIP PAIN, KNEE PAIN, HAND CRAMPING, SHOOTING PAINS IN EARS AND HEAD. SPORADIC HAIR LOSS, RASHES BACK , NECK SCALP FOREHEAD, Mind races, body exhausted, about 80lbs overweight - I COULD GO ON...

All my thyroid tests are normal - including antibody!!! What the? But they found a 3.5m spot on a sonogram left side thyroid. Palpible. WAITING FOR RESULTS...

If they tell me nothing is wrong I don't know what I'll do. SOMETHING IS DEFINITELY WRONG. I COULDN'T WORK IF IT GETS EVEN A LITTLE WORSE. As it is, I'm missing way too much time at work. Does this sound like Hashi to you?

Thank you so much for writing and hope to hear from you again!

Karen
Kombuchababy

Hinesburg, VT

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#4
Jan 29, 2011
 
Leigha! My last post was for you. I'm new to this and should have put your name in it! We are now anti vitamin D buddies. Thanks for the validation!!
oldpablo

Half Moon Bay, CA

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#6
Feb 27, 2011
 
I am glad I found this posting. I also seem to have bad reactions to vitamin d, fish oil pills and probiotics. They all cause me aches, fatigue, brain fog and eye redness. I have been diagnosed with Discoid Lupus via skin lesion biopsy and now take plaquenil. I seem to have other symptoms and a gluten sensitivity. I was thinking about trying vitamin d increases in small doses over time with a liquid type.

Kombuchababy-I have experienced many of your symptoms. Also having normal blood tests made a diagnosis very slow. Starting plaquenil drastically improved many of them including mental function, fatigue and bleeding gums. Although I had to do a gluten free diet due to bad digestion. I hope this helps.

I would be interested in sharing more exsperiances with these matters.
Paul
Leigha

Scottsdale, AZ

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#7
Apr 11, 2011
 
Hi kombuchababy and oldpablo
First off have you heard of the book "Why do I have Hypothyroid symptoms when my lab test are normal"? i found it interesting that a paragraph in the book says they have found a genetic defect in people with Hashimotos that makes them unable to process VITAMIN D!!!! you might want to check it out.
Im sorry I havent responded in so long! Kombucha to me Certain symptoms you say sound like Hashimotos such as heart palp and bottom of feet pain and fatigue etc.. I would just say to you dont give up... I was told given a few misdiagnosis and poo pood alot before I was given my Hashis diagnosis.
I have recently had a serious bout with extreme fatigue to the point where I thought I was having symptoms of a heart attack and taken to the emergency room. The tests they performed said I was in good health!!!!!!!!!! WHAT? But thats just it, its the tests "they performed". Im trying to get an appointment at the Mayo Clinic with an endocronologist to get to the bottom of it! Best of luck to you
Karen

Camrose, Canada

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#8
May 23, 2011
 
I was taking calcium with d and straight D for a long time. I got so sick, aching bones and muscles, pins and needles, twitching, electric shock feelings, aching arches and big toe, sinus, chronic sore throat, I felt like dying. I discovered my calcium levels were near being high so I stopped all calcium and D, it has taken me a year and most symptoms are gone except for some mild twitching, pulsatile tinnitus. I just tried doing omega 3,6,9 for 5 days and my symptoms are coming back. I believe it is the D in the fish oil. This is a very bad thing and there are days when I was at my worst I wished I could have died. My blood levels show my D as normal. I have been hypothyroid for years so I have no idea if this is connected. All I know is that if I consume too much calcium or touch D this all comes back. I discovered this myself and thank god I did because life was very very bad.
Vicki

Escalon, CA

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#9
Jun 18, 2011
 
I am elated to find I am not the only one that can't take Vit D! I was told I was nuts basically by my doctors although I felt certain I was right. My Lyme symptoms were much worse while taking D for a few months and improved gradually after I quit taking it. It's a darn shame that we aren't believed, I mean I have lived in this body all my life, 50+ years so I think I know it better than anyone, right! I may not have all the answers as to why it made me feel so bad, just that it did. I too a have thyroid problems, hypo and have said for years that the medication has not had any effect on me regardless of labs work.... No changes in symptoms but hey, labs say I'm ok so I must be right? I don't have a speck of energy and thickened skin, fatigue, hair falling out, brain fog, and on and on. Bleh,..... Good luck to you guys and best wishes to all for good health!
low D

Morris, AL

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#10
Jun 30, 2011
 
Thanks for this! I can just say ditto to almost everything here. This is helpful.
Carolyn

Karlstad, Sweden

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#11
Sep 9, 2011
 
@ Kombuchababy and Karen: I have just stumbled upon this thread, months after you both posted, so I don't know if you will see this, but I wanted to say that both of your symptoms sound like they fit being poisoned by a fluoroquinolone antibiotic (which I have been). Popular antibiotics of this kind are Cipro, Levaquin, Avelox, Tequin, and they all have -floxacin in their generic name. The effects from these antibiotics sometimes don't show up for many months! So think, have you ever taken these antib's, and if so, when? Often, a person takes them once or twice, and has little to no side effects, but then they take it again, and WHAM, they are hit with horrid effects that can last for years. Furthermore, the symptoms of having been "floxed" (as it is called) are very similar to malfunctioning-thyroid symptoms. I'd be curious to hear back from you both, and to know if your symptoms have improved - did you indeed have a thyroid problem, Kombuchababy?
Sunnie

Ogden, UT

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#12
Sep 9, 2011
 
I have the same symtoms with Vitamin D, can hardly bear the pain it causes, yet I need it so badly and when I quit taking it, I have symtoms of lack of D. I can't win. I have taken cipro and once had a prescription of Levaquin, but took only 1 as it made me ill. Is there anything to do to help this condition? I have never heard of it. Every doctor I ask thinks I am kidding. They really think if I took a sugar pill the same thing would happen if I thought it was vit d. It is so frustrating and I have dealt about 3-4 years with this. I feel as though it will never end. I have a cyst on my thyroid, but blood tests came back normal. I was prescribed a prescription dose of vit d from the endocrinologist I just went to. That would have put me in my deathbed, I think. I didn't take any, it seemed a ridiculous thing that she would even prescribe it when I told her what D does to me.
oldpablo

Half Moon Bay, CA

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#13
Sep 10, 2011
 
Sunnie,
Can you tolerate good old fashioned sunshine?
Sunnie

Ogden, UT

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#14
Sep 11, 2011
 
oldpablo wrote:
Sunnie,
Can you tolerate good old fashioned sunshine?
No, I have to use sunscreen if I plan to take time outdoors, gardening, or vacationing. It is awful because I used to live in the sun and now I have to use a hat and the sunscreen. It happened all rather suddenly and it took a while to figure out why I could barely move. One night after having spent 30 minutes in the sun in the previous day, I woke up and could literally not move. This is my 3rd or 4th year with this problem and if I control my amounts of vit. d, through food, pills and sun, things are better although not perfect. I have to have the D or depression and anxiety hits. So I buy a capsule version of the vit d and "empty" capsules from the health food store. I basically break down the full capsules into several of the empty ones so that I don't go beyond my bodies limits. Sometimes I still get too much. It is so strange because within 2 hours or less of taking vit. d, I can "feel" that I have taken it with the achy feeling etc. but in the smaller doses I can handle the discomfort. I also get the hair loss with too much. The symptoms stated by Kambuchababy sound as though I had written them, myself. I keep looking to find how to resolve, have been to MANY doctors with all kinds of specialties, but their answers haven't made much sense to me. The answer about the cipro was very timely because about 5 years ago I started having frequent bladder infections and got the above mentioned meds, and sometime after that, all this craziness began.
Sunnie

Ogden, UT

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#15
Sep 11, 2011
 
oldpablo wrote:
Sunnie,
Can you tolerate good old fashioned sunshine?
I have to mention one thing which I forgot. When I get the pain and it goes beyond what I can stand, I take ibuprofen. I was really afraid at first to take anything for fear that it would be problematic with the "already" bad reaction I was getting from the d, but it helped significantly. As was written by someone previously, EFA's such as flax also started giving me problems at the same time. It started gradually and I didn't notice it immediately as with the vit d. After a while, my feet "vibrated", felt "electric" and I felt shakey all the time. I finally went off all my supplements and slowly, one at a time, put them back and then discovered flax was doing that, which oddly, however, totally resolved all my bladder issues and discomfort from that.
Brie

Midland, MI

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#16
Sep 11, 2011
 

Judged:

2

I was so happy to find this post. I also cannot tolerate vitamin d supplements either. I have an autoimmune disease. My blood tests go back and forth between pointing towards systemic lupus and connective tissue disease. If I take vitamin d, I have severe muscle weakness, heart palpitations, and nausea. My symptoms get worse the longer I take it. I also cannot tolerate flax oil. I feel worn out, have stiffness in my joints, and dizziness. I cannot tolerate the sun at all, either. If I get any sun at all, I feel so weak I think I am going to collapse. Later, I end up with bladder infections, can't sleep very well, feel jittery all the time, and have anxiety attacks. The sun also does something to my metabolism. I feel hungry all the time and have a low blood sugar feeling. I have had the autoimmune disease for 30 years. The problems with vitamin d and the sun started suddenly 3 years ago. All my blood tests are normal, except that my vitamin d is low. The lower my vitamin d level goes, the better I feel. Neither my doctor nor my Naturopath have any idea what might be causing my symptoms. If anyone has any ideas, I would love to hear from you. Osteoporosis runs in my family and my low vitamin d levels are a concern to me. I have not taken the antibiotics that were mentioned.
Carolyn

Karlstad, Sweden

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#17
Sep 11, 2011
 
@ Brie: I just read a couple of days ago (on Dr. Mercola's website, but not sure which article) that a small percentage of people can't tolerate D and that they feel better and better the lower their D levels fall. That sounds like you. It is strange, though, that it started suddenly 3 years ago (as opposed to being born that way).
Sunnie

Ogden, UT

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#18
Sep 11, 2011
 
Carolyn, are you slowly getting any improvement as time passes? I really am wondering if I have a reaction from that Cipro, also...How is that diagnosed? Is there some type of test?
Brie

Midland, MI

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#19
Sep 12, 2011
 
Carolyn, my Naturopath did find an article about someone who has discovered that some people have a missing enzyme, which makes vitamin d toxic to them. She is leaning towards that as my problem, but it does not make sense to me that I could live for 42 years without a problem. Up until then, I took vitamins for years and was able to be outside for hours with only mild autoimmune symptoms - rashes, mild sore throat and aches- that went away the next day. Now, I have to wear sunblock or special sunblock clothing just to ride in a car on a sunny day. Parathyroid disease would explain a lot of my symptoms, but my PTH and calcium levels are normal, so is my thyroid.
Carolyn

Karlstad, Sweden

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#20
Sep 14, 2011
 
Hi Sunnie, sorry to not answer you sooner. There is no diagnosis, no tests. People usually diagnose themselves. Some doctors will acknowledge their self-diagnosis, but most won't. Floxed people have had TONS of tests (like blood tests for everything) by doctors but find nothing wrong on these tests. If you google Cipro or Levaquin and side effects, you will be amazed at what is out there. Thousands of people's stories, and some advise as to what has helped them. If you feel you may be floxed, I recommend the Flox Report (google it and thenn download it). It is 256 pages long, but you can read it bit by bit, in any order (table of contents is helpful). From page 50-60 there are some helpful charts and graphs that summarize symptoms and duration of these symptoms. Floxed people do see improvements over time, SLOWLY, and often not completely.
Other things for you to consider are: MERCURY poisoning (largely from a mouth full of dental amalgam "silver" fillings which are 50% mercury), fluoride poisoning, and toxic overload in general. Also, food sensitivities: gluten-intolerance (or dairy, or soy) can ruin people's health in all ways you can imagine. They often cause autoimmune problems, which, come to think of it, you may have. Theory: vit D increases one's immune system, but when you strengthen yours, it causes it to attack you.
Good luck on your journey to health! There are always answers, there's always help, but it is damn hard to figure out what it is. Lots of googling and research ahead of you. Try going to alternative/holistic doctors, muscle testing for food sensitivities, testing for heavy metal poisoning, etc.
Again, good luck!
Carolyn

Karlstad, Sweden

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#21
Sep 14, 2011
 
To Brie, You had mild autoimmune responses all along, but now they are suddenly worse? My guess is your body reached toxic overload of some sort causing your immune system to go out of whack even more toward vit D. Mercury poisoning is a huge problem for so many of us that we are largely unaware of, as is fluoride.
Example: I had a filling partially fall out a few months ago. Went to dentist who took out the rest of it and replaced the old mercury (aka "silver") filling with a composite. 3 days later, suddenly, my lower arms, wrists and hands could barely function. It's hard for me to believe it's not from receiving a large dose of mercury from that dental work in which I was unprotected from the mercury (clueless dentist, as many are). Now, 3 months later, my arms/hands are only half better.
Also, you said your tests came out normal for parathyroid. I know that for thyroid problems, tests often come out normal but mean almost NOTHING. Thyroid problems are among the hardest to diagnose.
As I just wrote above in comment to Sunnie, food sensitivities can ruin a person's health in so many ways.
Good luck on this journey we are all on to health! Google helps so much!

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