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Maybe vitamin D levels are why I'm so sick?

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Posted 3/4/2015 5:18 PM (GMT 0)
I keep coming back to this weird Vitamin D thing with Lyme. My doctor put me on 6,000 IU of vitamin D because my one level was critically low at 15. But he didn't test the other one that I keep reading about.

I was taking the Vitamin D for about..... maybe 2 or 3 weeks before I got really sick. I have alot of the symptoms of Vitamin D toxicity as they are very similiar to lyme symptoms.. I stopped taking it last week, and I don't know if I will restart it.

My levels for vitamin D have been that low for about 3 years. Before I was diagnosed with Lyme a doctor gave me the drops and I took them everyday for a while and eventually stopped becuase I didn't feel any better. When I was retested I was still that low..

I think it was Astroman that was posting about this a few weeks ago. Maybe someone can give me some insight. Half of what I read says to supplement it, and half says not to. As with all things lyme related, the more I research the more confused I get..
Posted 3/4/2015 5:40 PM (GMT 0)
Personally I think you should supplement with Vitamin D (and magnesium) rather than starve your body of it. But I don't know about the "other types" of vitamin D levels.

Is it possible that you could have too much Vitamin D even though your blood test says you're deficient, is that what you're asking? That doesn't make sense to me, but I guess none of this does!
Posted 3/4/2015 5:49 PM (GMT 0)
IHL - So you didn't have the 25-OH test done? Next time you see your Dr., ask him/her to do that test..I would think the LL Dr. would know the correct test.
Was it your PCP that gave you the other Vit D. test? (I think it's 1,25 )

If you Dr. won't test you, just do it yourself - there are labs in the U.S. that you can send for a kit.

From what I've read, too much Vit. D. isn't good either...(in fact there's a Lyme protocol that focuses on reducing your vitamin D levels - Marshall Protocol)
Posted 3/4/2015 5:52 PM (GMT 0)
It was my pcp. I'm not sure why my Lyme doc told me to take vitamin d. I'm desperate to figure out what went so wrong and I'm trying to.not leave any stones unturned....
Posted 3/4/2015 6:13 PM (GMT 0)
Just to give ya some idea of what I did, my Vit D level was 7 (new record for my Dr's office :p) when I started at my LLMD. I took 20,000 units for 3 months to get to the middle of the acceptable range and my Doc took me down to 10,000 units. Taking 10,000, I am holding at middle of the acceptable range. He did test me several times over the course of a few months to be sure I wasn't overdoing it.

While my levels are back to normal, I honestly couldn't say I feel better or worse, but that Vit is used in so many internal processes that its certainly not something (in my humble - non Dr opinion) that you should leave at deficient levels. It is something that I would only do under the care of my LLMD with testing etc though. .
Posted 3/4/2015 6:22 PM (GMT 0)
Ya I'm confused about the 2 different levels. One can be low and the other high??

I think maybe I should keep taking it until my next appointment. Something is using it up really fast. I need to do more research. I'll read about all of these things and think I have a good understanding. By the end of the day I don't remember any of it! So frustrating!
Posted 3/4/2015 6:30 PM (GMT 0)
I'm with ya IHL. This is one of the reasons I don't mind paying my LLMD. I'm amazed that some folks can do all the research and all natural treatments without having one to keep everything in line. I'm certain I would have killed myself if I was self treating :p
Posted 3/4/2015 6:30 PM (GMT 0)
Many in the NW are low on vitamin D since we have so many overcast days and my doc said that we don't produce as much ourselves because of the angle of the sun here. I've never looked into that to see if I agree, though. I think he starts out on a low dose and builds up. I'm too sleepy to remember. He does check it often.
Posted 3/4/2015 6:40 PM (GMT 0)
IHL,

Vitamin D is a very complex issue. CD was doing a lot of research on this lately. It kind of boils down to your active and inactive levels. Frequently Lyme patients will have very low inactive levels, but very high active levels. The low inactive levels are what determine in part Vit D deficiency. However, high active levels cause inflammation, which of course is very bad and can cause further issues, such as sarcoidosis.

In order for your body to properly process Vitamin D, you need adequate levels of Vitamin K2, Vitamin A (Traveler knows about this), magnesium and calcium. And prob other vitamins and minerals. It is a delicate balance. Too much or little can throw everything off. That being said, people on blood thinners cannot take Vitamin K2! It's a double whammy.

Vitamin D supplementation depends on whom you ask. You should discuss it with your LL. If you don't have the right balance, you could be dealing with toxicity issues and high inflammation.

Here's a great thread by CD3764:



https://www.healingwell.com/community/default.aspx?f=30&m=3316709




There are a number of other threads on this as well.

Post Edited (Lymie Girl) : 3/4/2015 6:14:36 PM (GMT-7)

Posted 3/4/2015 8:39 PM (GMT 0)
So Lymie Girl, When we get a regular vit D test which do they test for? Active or inactive?
Posted 3/4/2015 9:05 PM (GMT 0)
In Canada, the standard test is the 25-OH test - which is the one you want. Since the U.S. is usually one step ahead of us medically speaking...you're probably getting that one.
Posted 3/5/2015 1:09 AM (GMT 0)
IHL,

I hope you figure whatever is causing you so many roadblocks and overcome them soon! You're in my thoughts a lot. I'm sorry you're having so much trouble. :)

Dancingbear,

The regular test is 25-OH or inactive Vitamin D. It is supposed to be at 50 or above ideally according to many sources.

The 1,25 di-OH is not always tested. That's the active level, which also is an indicator of inflammation. In chronic lymies, active levels are frequently high.

Vitamin D can feed Lyme. So, you have to weigh the pros and cons of supplementing. Whether to supplement or not depends on whom you ask.

Post Edited (Lymie Girl) : 3/4/2015 6:12:24 PM (GMT-7)

Posted 3/5/2015 1:41 AM (GMT 0)
Totally depends on who you ask!! It's pretty 50/50 when you read about it. Very confusing.

I thought the Marshall protocol was mostly just BS and kind of dangerous? I forget where I heard or read that.... maybe I'm wrong?
Posted 3/5/2015 2:12 AM (GMT 0)
My daughters was at 16. Her LLMD gave her 50,000iu for 10 days and 10,000 for 30 days. She also said we had to add vitamin K & E. She took the first 50,000 for 10 days, but I just gave her a multi vitamin for the last 6 weeks. I just got the 10,000iu and started it a week ago and now her symptoms are more severe. All this is so hard to figure out. smhair
Posted 3/5/2015 2:25 AM (GMT 0)
See my level was 15 and started out with 6000 IU a day and got way more sick. Maybe we shouldn't be taking it? SO CONFUSING!!
Posted 3/5/2015 4:28 AM (GMT 0)
My Vitamin D level was 12 when I tested positive for Anaplasmosis. MY pcp told me to take 50,000IU once a week which I have done for 10 months and just started taking 10,000IU once weekly. There are many studies on Vit. D on Science daily that say you need it to live and the optimum level should be 50. Mine was prescribed (Vitamin D-2) but I decided against taking it after reading Vit D-2 is synthetic. Here is an article I came across:

Did you know there are two types of vitamin D, and they are NOT interchangeable?
In fact, taking the wrong one could do you more harm than good...
Drisdol is a synthetic form of vitamin D2—made by irradiating fungus and plant matter—and is the form of vitamin D typically prescribed by doctors.
This is not the type produced by your body in response to sun or safe tanning bed exposure, which is vitamin D3.
A recent meta-analysis by the Cochrane Databasei looked at mortality rates for people who supplemented their diets with D2 versus those who did so with D3, the form naturally produced by your body, highlighting the significant differences between the two.

The analysis of 50 randomized controlled trials, which included a total of 94,000 participants, showed:

A six percent relative risk reduction among those who used vitamin D3, but
A two percent relative risk increase among those who used D2
Posted 11/30/2017 7:04 PM (GMT 0)
Vit D is generally not good for Lyme. It made me worse. The theory is that in people with lyme the bacteria turns off VDRs and makes use of the Vit D itself to proliferate. But you should not starve yourself of it either. Just go out in the sun for a while for few mins and thats it.
Vit D can make you feel good in short-run as it is palliative for the immune system but in the long-run the bacterias that proliferate inside cells would make things worse. Your immune system can see the cells but not the bacteria so it attacks the cells resulting in autoimmune like reactions. So the idea is to minimize bacterial proliferation.
Posted 11/30/2017 8:46 PM (GMT 0)
Nab - it isn't the consensus that Vitamin D should not be taken.

Many LLMD's want you to keep your vit. d levels up.
Posted 11/30/2017 9:17 PM (GMT 0)

Nab said...
Vit D is generally not good for Lyme. It made me worse. The theory is that in people with lyme the bacteria turns off VDRs and makes use of the Vit D itself to proliferate. But you should not starve yourself of it either. Just go out in the sun for a while for few mins and thats it.
Vit D can make you feel good in short-run as it is palliative for the immune system but in the long-run the bacterias that proliferate inside cells would make things worse. Your immune system can see the cells but not the bacteria so it attacks the cells resulting in autoimmune like reactions. So the idea is to minimize bacterial proliferation.

Source?
Posted 11/30/2017 11:55 PM (GMT 0)
Basically my experience and experience of a lot of people on discussion boards. Some people have an impaired vitamin d metabolism in inflammatory diseases where they produce excess of active form of vitamin d from inactive form. Sun light gives you plenty of vitamin d and dont see need to supplement with a vitamin body can produce on its own. I will suggest instead of supplements eat foods high in vitamin d.
Posted 12/1/2017 1:45 AM (GMT 0)
Getting Vitamin d from the sun works well in the spring/summer...but where I live...not in the fall/winter.

Vitamin d sublingual tablets have kept mine up. No reason to change what I'm doing.
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