Lyme Disease and Low Vitamin D Levels anyone !?

Are Low Vitamin D levels associated with Lyme disease.  My Lab work came back with my Vit D level being 35 (at the end of Aussie winter).  It was 53, 18 months ago (at the end of Aussie summer) and I have been taking 1000IU daily since then, as well as trying to get out into the sun more.  I was wondering if anyone else was having any trouble with this and is there anything else I can do to get my levels back up?

[Ricobord]

Hi. I tested mysteriously low for Vit D about 6 weeks after my Lyme induced chronic fatigue kicked in. It was the end of summer, and I am fair, so I was surprised it was low. I get some sun everyday, but am careful not to burn. Only later, when I learned low Vit D is common with Lyme did I make the connection.

I started out on 2000IU a day, which got my level from the 30's up to the low 50's. But in the spring, it was down again.  When I saw an MS specialist, she said I could take up to 10,000 IU a day.  I upped my intake to 6000 IU a day. I am going to ask for a new level check at my next appointment. I will probably increase it again as we approach winter.

The MS doc said it is important to get the Vit D level up. She said they are still learning about it, but it seems critical for healthy immune function. It is directly connected to MS. 15 minutes of sunshine a day without sunscreen should help.  You might also ask your doctor about increasing your Vit D supplements.

[youvegottobekidding]

My doc said low vit D is common with lyme, and if it stays low for a longish time, your likelihood of getting thyroid deficiency is notably increased, as is your likelihood of weight gain and other metabolic problems (everythig slowing down I think). And of course you need vit D for proper immune functioning.
My doc wants me in 2000IU permanently oral, and to get in the sun daily as well.
He made me take that for a while then have a blood test - he wants me at the very top end of the normal range.
He put my son on Vit D too - I think he is prescribing it for all his patients now.
If I remember rightly, it was presented at the latest ILADS conference. If anyone has the DVD, maybe you could have a look?

[Robyn072]

Thanks guys......great info! My doc has just upped my dose to 2000IU/daily too.   Interestingly, it having been low for a long time my metabolism has slowed down, weight is piling on :-(  . Be interesting to see what my LLMD says next time I see him.  Thanks again, and I'll keep my eye out for that video.

[mojogal]

I also had low vitamin D with Lyme and then low B12 and hypothyroid all from the Lyme. I also take 2000 per day vitamin D as a supplement.

[carrie235]

Hi there,

My Vit D levels when first checked a few years ago were I think 27.  I had to take really high amounts of Vit D after that.  I got my levels up to the 70's and then fell back into the 50's while maintaining with 2000 iu a day.  So, now I take 5000 iu a day and 7000 in the winter!  I am going to have my levels retested in a few weeks to see how I'm doing.

It seems like everyone I know is low on Vit D!  And these are people that I generally consider to be very healthy people.  I don't think it's just lymies or MSers with this issue.

[JackieCalifornia]

I sometimes wonder if it's how many hours we spend inside and also wearing sunblock outside.  Once the medical profession decides to put a hex on something like sunshine, overkill is sure to follow.

[youvegottobekidding]

Very wise and true words Jackie!

Apparently they're getting many cases of kids with ricketts in England since the government made a rule that school kids must not be let outside at playtime unless they're smothered in sun block.

I also think it's interesting that the "normal" range for vitamin D levels varies dramatically from one country to another. The bottom of the range in Italy is close to the top of the range in Belgium, for example. Which just tells me, Belgium is a rainy old place and nearly everyone there is D deficient!

[Robyn072]

Thanks all! Hmmmm....so being a sun loving Aussie makes me thankful I'm not from Belgium...imagine what my levels would be like there.  I will chat with my LLMD..maybe my daily Vit D intake needs to be much more than 2000IU.

[gibsongal]

mine number  was 30 last fall. took  2000iu for a few months. have not had it checkd lately.

some info says that 30 -70 are normal
some 40
so... when other docs said it was fine at 30 i dismissed them!
wouldn't it be better to be higher than 30? like  at 50?

[tupins]

Maintenance level is 3,000 IU's of D3 daily.  If you want to raise your levels you need to be taking a minimum or 5,000 IU's a day and possibly 10,000 IU's.  Go to mercola.com Dr Mercola goes extensively into how much we need for various diseases and which tests to take for a proper reading.  If you have cancer or heart disease you need to be in the range of 90-100 where normal would be around 50-60.  He is an excellent source for this information.

Hopes this helps.

[JackieCalifornia]

I see various recommendations for how much is enough Vit D supplementation.  Do read the labels and elsewhere to see if you could create issues by taking too much Vit D if you are prone to kidney stones, for example, and some endocrine conditions.

Partly dosing depends on how much sunlight you get:  someone in Miami vs Seattle are in very different worlds.

My vitamins suggest 1000 IU per day as 250% of the MDR.  Just sayin':  more is not always better (except for chocolate and sleeping in late).

[Stargazer_Lilies]

One also  need to check 1,25 dihydroxy vitamin D level, not just 25 hydroxy-Vitamin D level.

Certain illness, including lyme, cause reversal level--high 1,25 vit D level, and low 25 Vit D level. Taking high-dose vitamin D supplements may not change the level at all until the treatment of underlying illness such as lyme is commerced. I am speaking from my own experience.

[Robyn072]

Thanks. Interestingly I have just got back from visiting my LLMD and even though he requested my 1,25 Vit D as well as the 25 Vit D they only did the 25 Vit D.  New blood taken yesterday so hopefully I will know the 1,25 soon.

Interestingly Jackie was my kidney pain last month after having increased my Vit D levels to the drs recommendatios....makes you wonder.

[youvegottobekidding]

Stargazer, you've become a real expert on this stuff!
I have this reversal, high and low vitamin D. My lyme doc has me on supplements anyway, he aid it is important protection against raising of ANA titers (which I have fairly high sometimes).
Do you know teh detail of what causes this vit D reversal/how it works?

[Juttin3]

I was just checked for vitamin D because the neurogist was running out of other tests to try and rule out lyme.  Mine came back at a 23. She said take 2000iu a day.  Idk if thats enough. She said thats probly why your hands and feet are tingling.


Only 7 doctors later to finally get that result. Longisland doctors are not good especially if you have lyme.

[Ricobord]

I tested in the mid-thirties. I found that 2000IU of Vit D were not enough to keep my levels up over the winter.  I went up to 5000 a day.  Another one of my supplements has another 500.  The MS specialist I saw said I could take up to 10,000IU a day with no worries.

Have you taken any magnesium suplements?  They definitely helped me.  The generic mag supplements did not help me, but magnesium citrate did.

Are you looking for a LLMD? It is amazing to me that most doctors remain so ignorant of Lyme, especially in the most endemic parts of the country.

[Stargazer_Lilies]

It is difficult to explain how reversal vitamin D level works.

To me, the best I could explain although it may not be accurate is that pathogen, steal vitamin D and use it for themselves, and make very good use of it because they spew out high amount of 1,25 Vitamin D back into body.

So low 25-D and high 1,25-D is telltale sign of something wrong going on in the body.  Two example of common conditions is well known for cause such reversal Vitamin D are sarcoidosis, and a form of lymphoma.

The body convert 25-D into 1,25-D as needed, so technically, 1,25-D level should not exceed the level of 25-D. If you are low in 25-D, then you should be low in 1,25-D too.

High 1,25-D is sign of Vitamin D toxicity. Often that happens if you are taking huge amount of Vitamin D supplements, but that was not case for me.  My 1,25-D level was high already prior to the start of supplement.

When i started the supplement, for one year my 25-D remain stubborn deficient (in 10's) and my 1,25-D persisting at around 120.  So I was told to stop supplement, and start the medical investigations because my health was spiraling out of control.

Meanwhile  I was placed on doxycycline by my dermatologist in attempt to control skin infections, and about six month into it,  I was bedridden.

At that time of being bedridden, my 1,25-D drop by half mysteriously. Not only that, my hypothyroidism and few other symptoms disappeared.  So, it sounds like pathogen(in my case, lyme) was push back, hence free up of 25-D for body to use.

So I restarted supplement, and it works, my 25-D rises to 50's, and 1,25-D remains in 50's.

I don't know if my explanation is accurate, but it is how I see it and interpret it.

[JackieCalifornia]

This is first time I've read an explanation of Vit D that makes sense to me --

Thank you for posting it -- !

[mojogal]

Your explanation was great!
I had it too plus becoming hypothyroid , B-12 deficient and my brain doesn't let me remember the rest.

[JackieCalifornia]

I too was on thyroid supplements during Lyme treatment, and then suddenly didn't need them anymore ... which I figured out when I was up ALL night one night and the next day.  

It was really strange, since one of my best talents is sleeping.  I stopped taking the thyroid meds cold turkey, and haven't needed them since .... and I'm back to sleeping like a rock, for a couple of years now.  

[Juttin3]

I tried taking magnesium but it felt like it made no difference with my weak muscles. Is it vitamin D or something else thats supposed to help magnesium absorb better ?  I have to look at my other vit D levels i know there were like 3 different #s under the 23

[mojogal]

I can't sleep either. Hate that!

[JackieCalifornia]

I don't know that magnesium (Mg) will help with *weak* muscles, but it does help the aching and cramping that can happen, because Lyme bacteria apparently use up Mg in their rude little reproduction process.

I have read (and it works for me) that any variety of Mg that ends in "-ate" is easiest for the body to absorb, such as magnesium malate, aspartate, orotate, citrate, and maybe others.

I read recently that the kind of Mg that is in the 'Cal-Mag' combo of calcium and magnesium is Mg oxide, and it's not very absorbable AT ALL.

Anything ending in "-ate" is probably okay, as long as it's a non-junky brand, but I'm no authority on vitamins that way.  I use a type called "Magnesium CAO", which has Mg citrate, aspartate and orotate all three mixed.  I've been very happy with it, but I'm sure others work fine too.  I've only found it to available online.

I had a snotty doctor tell me not to take oral Mg because I would damage my kidneys, but then I read that before you get to that danger point, it would give you diarrhea.  Well, I only take the dose that's on the bottle label as recommended, and no problems at all.  

Another way to get Mg is by taking baths with Epsom salts in the water.  It's available at the drugstore and maybe grocery too, dunno.  Turns out that Epsom salts (my grandparents used it for foot soaks) are simply Mg!  It absorbs through the skin and is nice and soothing too.

Mg is relaxing, and one reason babies get all floppy after a bottle is that milk has Mg in it.  So it may help you sleep too.  Just stay in the recommended dosage.

[Ricobord]

Yeah, I don't think Mag will help with muscle weakness. It helps with muscle twitching, muscle cramps, and it can soothe irritated nerves. It can also soothe the heart, something that is irritated in many Lyme patients.  Mag helps muscle and nerve function, so it is important.

For awhile I had to take my daily dose split up over three doses during the day. I could literally feel when it was time for my next dose,  I had a hard time getting my level up and stable until after about 6 months into treatment.  Epsom salt baths definitely helped.  Absorbing it directly into the skin is much more efficient than oral supplements, where much of it is wasted by the body.

Magnesium oil rubbed on the skin is helpful, too.