seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I am very happy for the first time my Vit D, 25 level has increased. In Nov-07, I was at 23 (normal 25-80). Several other times, I got a 38.
I was taking these Vit D3 drops (approx 6,000 IU daily) ordered by a previous holistic doc. They must've been a joke as my D levels never went up after three months.
My LLMD wanted me higher doses yet. I was told to take 10,000 IU daily. I took between 6,000-8,000 IU of Vitacost's D3 gel caps for 4 months. My latest reading is the highest I can ever recall: 52!
However, my LLMD wrote on the result he wants me to DOUBLE my dose again. That would be 16,000-20,000 IU of D3 daily. I only see this doc every 6 months now.
Am I getting into unsafe terriroty? I surely won't be tested for 6 months. The test handout says >80 is considered toxic. My LLMD said 70-120 is best. Who is right? Can I hurt myself?
I see so many opinions on webpages. My old docs didn't even care when I had a 23 rating. That's stupid. Is 52 good? Did anyone notice additional health benefits pushing from low 50s to 70 or 80s? I care about how you felt physically. Not test numbers. Know what I mean?
All this aside, I now wonder if increasing my D, 25 levels and NOT antibiotic treatment alleviated my bone pain issues??? I ask myself everyday if these Abx are helping much or am I stupidly attributing improvement to them that could be a result of other variables.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
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Member # 16270
posted
My D level started at 19. At 30, my LLMD seemed okay with that.
My endocrinologist suggested getting it up to between 60 and 75. This was before I knew I had LD. He put me on 100,000 IU's a week. It went to 129 very quickly, within about 3 or 4 months and he freaked and so did my GP. GP said he had never seen anyone's D this high and was very concerned. I then backed the D down to about 10,000 IUs a week and it came down in about 2 months, I think to around 40 and then all the way to 30 by the time I went to the LLMD.
The intersting thing is that when it went to 129, considered toxic level, I went into remission. I didn't know I had LD at the time, had a FM diagnosis, and felt so good for 6 weeks I thought I was cured. When it plummeted back down to 40, I was sicker than I had ever been. I had been ill for 2 years at that point.
Endo said that vitamin D acts as a steroid in the body, so it makes one go..... HMM!
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
/\ Any other thoughts?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
60-80 is good. 120 is a bit high. Depends also on your D1,25 levels. When I went over 100, I dropped the dose back.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
My doc wants my levels at least at 85. I had to take 50,000 IU's a day for two months to get them up and I continue on that dose.
I have them checked every two months. Everyone's body will react differently. At first lower doses were doing nothing, so I had to go to the higher doses.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks. Scott/Abxnomore did you feel better when your levels hit higher numbers? I mean from 50 to 70-80?
I cannot believe this holistic doc I saw a few times told me my D levels would increase by taking 2,000 IU daily. I was already on 6,000 IU and not moving. I don't know what he was thinking!!
My D1,25 level was normal. Sutherngrl, that's very interesting what the high Vit D levels did for you. I guess my doc's not a believer in the Marshall Protocol. lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Yes, I feel better. I also started with 2,000IU's.
Then moved to 6,000IU's and than up to 50,000 daily.
Recommendations about vitamin D are rapidly changing as lots of new research has come out about it within the last year.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
What should a daily maintenance dose be once levels are at a good level?
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
I was recently diagnosed with a Vit D deficiency also, and my LLMD put me on 50,000 IU once a week. I'm getting retested in another three weeks, and I'm curious to see what my levels are.
Before Starting the Vit D, I'd been having terrible bone pain, different from all the other aches and pains that have come with Lyme, and thankfully, the pain went away with the supplements.
I'll be watching this thread to see what others think is a good maintenance level.
Posts: 962 | From Charleston | Registered: Jan 2002
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Maryland, those 50,000 IU doses are usually not D3.... Some would advise against the high dose D2 in favor of high dose D3...
Maybe you can check with your pharmacy to see if it's D2 or D3...
There are mixed views on this...some now say D2 is just as good...
And more good news here: Cystatin D is a candidate tumor suppressor gene induced by vitamin D in human colon cancer cells http://www.jci.org/articles/view/37205
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Is it dangerous to be taking 20,000 IU of D3 with a current D,25 level of 52 and not being tested for at least six months. Is it more sensible to request testing every 3 months to ensure I'm not overdosing myself?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Mine's lower than yours, Seek, but I always like to err on the side of testing more frequently...
I take only about 2000 IUs per day D3...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Did anyone herx on Vitamin D3?
I think I do. Did you ramp up?
Thanks.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
The D2 vs D3 question is one I had not even thought to ask. My prescription label gives me no clue; hopefully the pharmacy will know what they are giving me.
Thanks for the links, Lymeorsomething.
Posts: 962 | From Charleston | Registered: Jan 2002
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Cheryl, I herx on vitamin D3 and have a hard time to get started with treatment. But also porphyria people have trouble taking D3 and they cannot tolerate the sun. You might have this problem. I have no idea at the moment how to solve this problem. Karen
Posts: 1834 | From US | Registered: Oct 2008
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