posted
If you haven't had your doctor check your Vitamin D levels, please get it checked. Many of us have low levels and this contributes to the fatigue.
My level was so low! I have more energy now that I'm taking supplements.
Posts: 111 | From York, PA | Registered: Jul 2007
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
What kind of D supplements are you taking and how much?
gwb - doctor put me on 50,000 IU's a week for 1 month. That brought my level up to normal. Now I'm taking 1,000 IU's a day and my level is holding steady.
Posts: 111 | From York, PA | Registered: Jul 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Holy crap that's a lot of Vit D
Vit D is an immuno-suppresant... so be careful
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
The 50,000 was a lot, but it did what it was suppose to do. My Vit D level was 4. No where near 35-80. And now I stay around 45. With all the documentation available it's hard to tell who to believe. Some say it's an immuno-suppresant, some say it helps the immuno system. All I know is I haven't felt this well in years! My herxing is livable. Instead of being fed and dressed by someone else, I'm working full-time and am able to go out after work now. I'm taking care of my parents. And I've started exercising and walking because I have energy! I have a few tired days in the month and I do watch how much I do. But all and all I can live with this now.
Posts: 111 | From York, PA | Registered: Jul 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Vitamin D is VERY important. My LLMd really keeps on top of this. It is not an immunosuppressant it boosts the immune system. This is exactly why patients w/MS keep their levels low, their goal is to suppress their immune system.
It also showing to keep the flu away, including Swine flu. It must be true, my son had a horrible case of the Swine Flu and it didn't touch me.
posted
not saying that vit D isnt good/important but...i have a business where i work outside all day everyday and ive never been sicker.
Posts: 13 | From Kansas City | Registered: Jan 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You can do a search of lots of D threads here.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
When you live up north, you cannot produce vitamin D from Oct till March so you should supplement it. Milk is fortified but the vitamin D is destroyed by light and the milk is under lights until you buy it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Correction, I checked my bottle and I take 2,000 IUs a day.
Posts: 111 | From York, PA | Registered: Jul 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
lymebytes,
That makes no sense.
For starters.... vitamin D is not a vitamin at all.
Our body produces its own Vit D in the kidneys.
Vitamins by definition can not be produced by the body.
Second of all it is a seco-steroid and in high doses has immune-suppressant behaviors.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
strange how vit d is destroyed by light yet you get it from sunlight. i know your body takes sunlight and produces it i was just saying...
Posts: 13 | From Kansas City | Registered: Jan 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
So the bottle that I've had in the kitchen may no longer be good? I just realized it has been under a light we leave on most of the day and at night. I should probably not keep my meds and supps there.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I just got a call from my LLD telling me to take 5,000 of Vit D a day. Good timing for this thread.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
When all of my symptoms began I was tested for vitamin D deficiency and my level was 6. My doctor put me on 50,000 IU's a week for 4 months. This brought me level up to 40. I am currently taking 5,000 IU's everyday of Vitamin D3
Posts: 151 | From california | Registered: Dec 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Please read this web-site, I've been Nauseas for about 2-3 weeks off and on and maybe this is way. I'm not on any medications only supplements and viiamins.
posted
My LLMD has me on 10,000 IU per day of Vitamin D3.
I use Carlson's D3 Ddrops, which have no taste and do not bother me at all. One drop is 2,000 IU, so I take 5 drops per day, all at once.
I either drip them on top of my tea (the base is coconut oil) and sip them off the top of the liquid, or drip them on a bite of food. I usually am not taking anything else at the same time, but sometimes I have sodium ascorbate (vitamin C) powder in the same cup of tea.
I will check my level in a week, to see how it is doing.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Yes be careful with the Vit D-it does indeed supress the immune system in high does-I actually even read an article recently in Science Times I think about how low levels of Vit D are actually apart of the disease process and supplementing can make it worse. Very interesting.
This is not the case with sunlight since our bodies know when to stop generating the Vit D, but with ingested in huge quantites this step is bypassed so its easy to take too much.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Yes it does supress the immune system....this happened to me......
When I was ill, before I knew it was LD, my vitamin D level was in the teens. An endocrinologist put me on high dose vitamin D, 50,000 IU's 2x a week. It did bring my D up all right, up to 129.
I felt really good for about 6 to 8 weeks; but doc had me drop my D intake back to 50,000 IUs a month. 129 is considered a toxic level. Once the D dropped back down to normal, I was sicker than I had ever been!
He(the endo) told me that Vitamin D does indeed act like a steroid in the body. I think this is only a problem when it gets too high, out of the normal range, but I try to keep mine around 50 or 60.
I had a false sense of wellness when it was at 129. I guess a "steroid effect". But when it hit the normal range again, I could barely function at all. I feel that during the time that the D was so high and acting as a steroid, the spirochetes really took a toll on my body.
It was 7 months later that I found out I had LD. I had been ill for 2 years. I wish I had never taken high doses of vitamin D. Now I only take 5000 IUs a week and at my last D check it was around 60.
I think its better to do most things in moderation!
Please be careful with large doses of D! I am not advocating against D whatsoever, just take moderate doses and keep it checked.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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D25 hydroxy is the one most often measured in the blood. If you are indoors a lot, have fat malabsorption, or are vegan, etc...chances are good this will be low. In this case, you DO need to supplement.
D1,25 dihydroxy is the "active" form. It is a hormone, not a vitamin. It regulates many things including immune function and calcium balance.
If your D25 is low but D1,25 is high, it might not be wise to supplement Vit D. The jury is still out on this, though.
With Sarcoidosis and other granulomatous diseases like it (some docs say chronic Lyme is like this), adding Vit D as a supplement will do a few things:
-not increase your D25 level -increase your D1,25 level -increase Calcium too much -dysregulate immune system and cause problems
With plain old Vit D deficiency, adding Vit D will do this:
-increase your D25 level -possibly decrease your D1,25 level (if it was high) -increase calcium -make you feel better
With Sarcoid and diseases like it, which cause Vit D dysregulation because the granulomas are releasing D1,25 into the body...the typical picture is this:
-Low D25 -High D1,25 -High Calcium -Low PTH
With Vit. D deficiency, the typical picture is this:
-Low D25 -Low or normal D1,25 -Low calcium -High PTH
So if you are wondering whether or not you need to supplement with Vit D, it's probably worth checking not only your D25 level (which is the one usually measured), but also your D1,25 level, PTH level, and ionized calcium. ACE is worth measuring if you are being considered for Sarcoidosis.
Some docs believe Vit D should be restricted in Lyme patients with elevated D1,25. Others believe this is not necessary unless those patients have proven Sarcoidosis.
But remember when we say "Vitamin D", we are really talking about many things!!
Do your research and ask your doc!
Posts: 95 | From Maryland | Registered: Sep 2009
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posted
I have been on 50,000 units since approximately last June given to be by a Rheumotologist. It has not yet gone up into the normal range.
The rheumo said to me (as he did not believe I had Lyme) well I will check you for the gene for Celiac (sp?) disease and if that is negative...I don't know what to tell you.
So, I no longer go to him and primary care decided to keep me on it for 3 more months and then he will send me to a Endocrine specialist.
And the wait continues....
Posts: 22 | From Massachusetts | Registered: Jul 2007
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posted
In my opinion, if your level hasn't come up, you need to have your D1,25 checked. Also have your PTH checked...if it's low, there is Vit D dysregulation (PTH should be high if your problem truly is basic deficiency in the vitamin).
Also, if your calcium is not low, then the problem is not with Vit D absorption (it should be low if malabsorption is the problem).
Celiac would probably result in other deficiencies too: B12, iron, and the other fat-soluble vitamins (A, E, K). Your calcium and potassium would likely be low too.
While you're waiting for an endo, I would ask your rheumatologist and/or GP about Sarcoidosis if they doesn't believe you have Lyme. At least this way they should check your Vit D, Vit D1,25, ACE, PTH, Calcium.
Just a thought...
Posts: 95 | From Maryland | Registered: Sep 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I had some really nasty symptoms turn on when I accepted advice to start taking high doses of Vit. D.
Then, I got my D 1,25 tested, as well as my D-25, and found out that my D 1,25 was at a toxic level!!!! But, my D-25 was low.
Ugh.
So, no more Vit. D for me!!!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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