I just got back some test results and they are telling me my vitamin D is a 13 and should be bet 30-100??? Is this Lyme related, I am Lyme positive since 2009. Finally got to a good LLMD and he ordered these tests but I haven't had a chance to talk to him yet.
Posted by sixgoofykids (Member # 11141) on :
My doctor wants my vitamin D above 50, and more doctors are wanting it at that higher level these days.
I don't know that it's a Lyme-related thing. I think it's a "You must use sunscreen because the sun is evil" thing. It's also a "I live in the north" thing.
I try to get natural sun exposure with no sunscreen and preferably in a bathing suit about 20 min per day when I can. When I can't I use my Dr. Mercola tanning lights AND vitamin D drops.
Posted by triathlongal (Member # 31684) on :
I too have low D. Not as low as you but it is around 20.
My LLMD does not think it is lyme related but did feel it would only help fight the good fight to get it back up around 50.
I take vit. D drops daily as well.
Posted by Jane2904 (Member # 15917) on :
Daughters is below 30 and ND said ideally should be around 70.
She is now increasing her daily intake of vit D3 for two months and then will retest.
2000Iu's daily did not raise it but did keep it at the level it was back in the fall. Now she is taking a larger dose daily and will see how it goes.
Posted by sixgoofykids (Member # 11141) on :
My doctor has me on 5000 per day.
Posted by imagine2 (Member # 3136) on :
My llmd has me on 20,000 a day and my levels are barely hitting 50.
Posted by jadams (Member # 28016) on :
I truly believe this is related to Lyme Disease, as this is very common in LD patients. I blame this disease for all my problems b/c quite frankly I was healthy as a horse before this. I cannot get my vit. D up, its around 24. From what I have heard 30 is just too low and 50 or above is optimum.
Posted by jojolaw (Member # 31159) on :
Oh god this is depressing, I could accept if Lyme related, now another issue too. I am iron deficient as well always was. too many issues to deal with
Posted by average joe (Member # 26091) on :
Normal range is 30-100 but as was mentioned most docs like to see at least above 50. Mine was about 23 when this all started. I took 1000iu for a couple of months as per my primary doc but this barely bumped it. LLMD had me take 10,000iu for roughly a month then decreased to 5000.
That put me in the high 30's so within normal range but again the LLMD wants at least 50. Now on 6000iu. She did ask me if I spend any time in the sun WITHOUT sunblock which I apparently do not do enough of.
You can find articles both ways as far as whether caused by lyme. Some LLMD's use it as a marker because the lyme effectively uses vitamin D. Still others say that is not the case. As SixGoofy mentioned, many people in the northeast have low d levels because of minimal sun exposure.
I think there is no question that low D levels are related. the question is do you supplement it? the answer is not so simple. there are some compelling arguments for D supplements from the Vitamin D Council. And there are some compelling arguments against them from the Marshall Protocol folk. Somewhere in the middle are the LLMDs. And us. And there are a lot of opinions.
I think you should read up on the topic and form your own opinion.
Good luck.
Posted by t9im (Member # 25489) on :
With a 13 you'll come down with bone and other problems. It can also make the fatigue worse.
Under 30 is considered deficient. The right level is still being debated. I think 80 is probably decent.
Toxicity can occur when it is over 120.
Gel or liquid is the way to take it, powder and regular pills aren't absorbed.
20k a day is high, I've read toxicity from those taking 10k a day.
However, how we absorb the D3 and convert to H125 is different.
Need to do the blood tests to monitory the H125 level. If one goes over 100 they should back off.
Posted by merrygirl (Member # 12041) on :
I was around 35 or low 20's cant recall, but i took xymogen liquid drops at 10,000 units a day for several months it went to mid 50's
I am pregnant and i still take 4000 units a day
The drops are awesome because 1 teeny drop is 1000 iu
Posted by jojolaw (Member # 31159) on :
thanks so much for all the info. It just adds to it. I barely make it through work now. I feel like I need to just stay out on short term dib just to get my body back in order again. Its fighting too many things. I also heard docs can prescribe the Vit d too, they did that for my friend. I guess I'll see what he says. I am wtng on my levels fm CD57 test. Thanks again.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by merrygirl: The drops are awesome because 1 teeny drop is 1000 iu
They also have drops that are 2000 IU Posted by Bugg (Member # 8095) on :
Jojolaw--Since you also mentioned that you have been iron deficient, you may want to check to make sure you don't have malabsorption/gluten sensitivity/celiac disease.....If you're low in iron and Vitamin D and B vitamins, for ex, you may not be properly absorbing these from foods....
On another note, I never had ANY problems with vitamin D deficiency and was healthy prior to lyme. Since having lyme, I've had problems with Vitamin D deficiency...I think lyme through inflammation can interfere with our absorption of Vitamin D.....
I'm surprised your legs don't throb and ache with your Vitamin D levels that low.....
Posted by Lemon-Lyme (Member # 19229) on :
quote:Originally posted by sixgoofykids:
quote:Originally posted by merrygirl: The drops are awesome because 1 teeny drop is 1000 iu
They also have drops that are 2000 IU
And Carlson makes 4000IU drops, as well (what I use). I take it every other day, and one bottle lasts like 2 years (or until it expires).
Posted by jojolaw (Member # 31159) on :
My legs and all joints are an issue. Last summer they were doing ultrasounds on my leg to make sure I didn't have a blood clot!!! So I've prob been like this for at least a year!!! Amazing.
Posted by MichaelTampa (Member # 24868) on :
Some believe the body adapts its hormones to do the best it can with the disease. Remember, vitamin D is a hormone. I believe that hormones should be messed with only very carefully.
I use energy testing on all supplements and substances, and have had a few periods of a couple/few weeks where my body has wanted vitamin D supplementation, so I have done it. I have hard much longer periods of my body not wanting the vitamin D supplemented. I do what the energy testing says, and think that's better than any theory, particularly when there are compelling competing theories, as is the case with vitamin D.
Posted by jojolaw (Member # 31159) on :
Thanks for the info
Posted by Bugg (Member # 8095) on :
Also, fyi, when you start supplementing with Vitamin D, you may initially get some cramping in your feet and tingling/numbness in your hands/feet/around your mouth...this could be a sign of low calcium.....It's so important to have a healthy balance of magnesium, calcium, and Vitamin D......
Posted by Neville (Member # 5890) on :
Historically I have been D-deficient as well. I'm convinced there is something crazy wrong with some vitamin D process in my body.
For a span of several years I could not tolerate sunlight on my skin for any significant time. Irrespective of temperature and other variables, sun exposure would cause my heart to beat badly out of rhythm a few hours after exposure.
Strangely this resolved completely after several days of inadvertent sun exposure and resulting scary heart pounding/skipping.
These days I tend to average better if I get very regular exposure to sunlight. My troubles are mostly centered on my peripheral nervous system and mimic (or perhaps are caused by a) neuromuscular disorder like MS or CIDP.
Sunlight has been so important to stalling the progression of whatever this is, that I spent the winter in a much sunnier climate and on average did far better.
Posted by steve1906 (Member # 16206) on :
This is hard to believe???>
vitamin D Supplementation may make the disease worse.
So do the drops not have any taste??
Posted by merrygirl (Member # 12041) on :
The drops i take dont taste much like anything, maybe a bit oily. I think it is made froM sunflower oil, but not positive. But even with my severe nausea and vomiting they are no problem. Sometimes i wonder if i even got it in my mouth
Posted by Lymedin2010 (Member # 34322) on :
Well, this thread sparked me to question vit D as well.
I have been low on vit D as well & my neuro had me take Drisdol (once a week). Backtracking now, I see that I have gotten progressively worst since starting it. To a point where I cannot believe that this can happen with the ABX that I am on.
I had made such great progress only to slide back. Very disappointing.
Posted by LBS (Member # 33323) on :
I was deficient at a 32 in August 2011. Was tested last week and am at an 81. Have been taking Vitamin D3 5000 (Metagenics) since middle of September.
Many people are deficient...TBD or not, from the many articles I have read. We don't get enough sun exposure. Lifeguards can be found in the range of 80-120.
Posted by skigal (Member # 7443) on :
Lymed2010, you are taking the incorrect form of Vit D. Should be taking D3 not D2 (Drisdol).
Posted by Razzle (Member # 30398) on :
My Vitamin D (both the 25 and the 1,25) levels are very low. However, supplementing with Vit. D makes it impossible for me to sleep.
So I figured it must have something to do with my gut, and since our skin has a natural mechanism for absorbing Vit. D from the sunshine, I started putting drops on my tummy topically to see if that would cause sleep problems.
It hasn't seemed to be an issue with sleep for me (I use two 2000IU/drop Vit. D3 drops), but I keep forgetting to use the drops...gotta go put mine on for today!
So once I actually start remembering consistantly to use the drops, I will get re-tested and see if my Vit. D. level has come up any (or stopped falling)...
I also seem to remember something about people who have VDR variants (more methylation cycle genomics...) may not be able to handle large doses of Vit. D supplements.
Both of the VDR's tested on me are variants, one is +/- & the other is +/+ (double variant, therefore more of a problem than the single variant +/-).
So I have to wonder if the VDR variants play some role in why I have trouble tolerating Vit. D supplements orally.
Posted by Razzle (Member # 30398) on :
Oh, should also add that two doctors have told my DH that the body uses 4000-6000IU Vit. D daily...
Posted by nonna05 (Member # 33557) on :
could there be any thing else this illness can cause ,or is it because we are sick that tewe other things happen?////
serious, I feel like I'm treating enough stuff to kill off some of this.
Out of 6 weeks , I got out ,other than doctor. for about 2 hours each day,for three day's. With help and by Thursday late night until Sat. noon. You'd have to guess if I was alive or no.. Well not that bad, but it's getting to the point where husband just assumes I'll get through it.... I couldn't move for several hours ,my breathing was horrible and I hurt to the bones.
Could this be deficient D //Some LLMD say no D others say pour it on.
Also potasium goes low often
What's a girl to do???????
[ 12-14-2011, 06:35 AM: Message edited by: nonna05 ]
Posted by Razzle (Member # 30398) on :
Nonna,
Here's my take on this issue: Get both the 25 and the 1,25 Vitamin D level checked.
If the 1,25 level is high, then it might not be good to take Vit. D supplements, in my opinion.
If both levels are low, then I think you need to supplement.
Otherwise, a supplement may or may not help, but deficiency is good to avoid.
*** Important *** Always make this sort of decision in discussion with your specific Lyme doctor.
I hope this helps - take care,
Posted by nonna05 (Member # 33557) on :
Yes. On my last test,several months ago my d was way low, the hydroxy was 2or3 above range so slightly high... compared to very low on reg test. But my bones hurt some days so bad . It feels like could break. Don't know if it;s a co-infection symptom or D drop.
Posted by Lymedin2010 (Member # 34322) on :
Skigal, that is what my doc prescribed.
Posted by skigal (Member # 7443) on :
Yikes 2010, my PCP told me to get Vit D3 (Cholecalciferol) only. She stated that is the most natural form & D2 (Ergocalciferol) is synthetic.
Posted by sleeping dog (Member # 27267) on :
the first diagnosis i got (other than that i had mental illness and was making up symptoms for attention) was vitamin d deficiency. the doctor prescribed 50,000 units / day initially. my vitamin d level was 9. i was achy and fatigued, extremely exhausted, and had great difficulty walking and climbing stairs. my teeth and jaw hurt constantly and the enamel was 'melting' off of them. the vitamin d dramatically improved these symptoms very quickly. i still had these symptoms from the lyme, but life became bearable. what i later learned from my llmd is that extreme vitamin d deficiency (when you have good nutrition and reasonable exposure to sunlight) is a symptom of something; in my case, lyme. my vitamin d levels have since stabilized and i am taking 10,000 units / day. the doctor believes that this high dosage is necessary because the lyme continues to interfere with my body's ability to absorb the vitamin d. my level has increased and remains in the 50s.
Posted by MichaelTampa (Member # 24868) on :
I know vitamin D2 can come from plants, so saying that all vitamin D2 is synthetic is just uneducated.
Posted by miklizro (Member # 33665) on :
My daughter's d is very low and on 2000 a day for 4 months it went even lower. Now have her on 5000 iu a day hoping to bring it up.
Posted by lymeinhell (Member # 4622) on :
D deficiency goes hand in hand with Magnesium deficiency - which is classic Lyme.
You need D to process magnesium and vice versa. If you take D(3) and not mag, your D may not go up.
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