Before I start my question I want to just state that I am in the process of getting my insurance to cover my request to see one of the Doctors suggested to me on this site.
Now with that being said I recieved some of my results from my Doctor at the Cleveland Clinic. He called me and advised me that my Vitamin D count is extremely low. I know what Vitamin D is and that it is usually associated with sunlight. He has now precribed me with a prescription to basically slam my system with Vitamin D. I have done some research on Vitamin D Deficiency and have found it to cause some of my symptoms. I also have read that this deficiency is also an underlining result of something else going on in my body.
Just would like to hear some thoughts on this as well as see if anyone else has had this problem with their Lyme.
Once again thanks for listening
2332
Posts: 10 | From Delaware Ohio | Registered: Feb 2008
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I have vitamin D deficiency, it was below 7. I've heard that it might be due to lyme, but I think for some of us it might be due to the fact that we rarely get out of the house into the sunlight.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
As soon as it gets warm enough and sunny enough, I start sitting outside in the sun on the "warm" side of my porch for 15 minutes per day. But in the winter I find I need a vitamin D supplement.
I do feel better taking it ... but I can't wait till the sun is out and I can get the real thing again.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I don't think it's specific to Lyme. They are finding all chronically ill people have a malabsorption problem with D.
Getting out for 15 minutes a day is great, but my doctor says all his ill patients feel worse from Jan to March. And we live in a state that gets over 300 days of unobstructed sun. I'm a crossing guard and I'm a little low!!
As for getting slammed...start very slow at 400IUs My duaghter herxed BIG on the fourth day and scared us to death. She is now up to 6000IUs and getting out in the sun. It no longer hurts her.
Posts: 2903 | From AZ | Registered: Feb 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
This is a link to a thread I had started about vitamin d - you will see other people including mine is low.
Topic: to those taking vitamin d - especailly those w/low vit d
posted
If your vitamin D level has been chronically low for a long time, slamming your system with large doses is NOT a good idea, plus the fact that the high dose prescription D is inferior to what we make from sunshine. If you tend to feel better in the summer months than the winter, that is good evidence that you will benefit from supplementation, if the reverse is true, you need a more extensive work-up (parathyroid hormone, calcium, and 1,25 dihydroxy D level) to figure out the best path. Light supplementation with a fish derived Cholecalciferol with gradual titration to a therapeutic dose will get the best results.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Thanks for the info. I guess I should search the site before asking a question . This has been really helpful. I am glad my Dr found the Vitamin D problem and was kinda hopping that may be the only problem. I guess it is just reafirming my thoughts about Lyme.
Thanks for all of the replies
2332
Posts: 10 | From Delaware Ohio | Registered: Feb 2008
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posted
A low 25D is a very common finding for lymies, but typically not a concern because 25D serves little purpose. The bioactive form is 1,25D, and most lymies are high in it because the infection consumes 25D and makes lots of 1,25D.
Lymies should test specifically for 1,25D. If it's high, there's no reason to add more via diet. Plus, since it's a steroid, it might inhibit your immune function and make it tougher to beat the infection.
Posts: 727 | From USA | Registered: Mar 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
2332, typical doc appt! Sorry, but they will lead you down the never ending path of this and that.
You are lucky someone found the Vit D problem. There are really two types of Vit D deficiency talk on this board. There's Vit D and then a Vit D3.
Yes a search will answer many questions about Vit D and others experiences with taking good supplementation. But I don't believe you will find anyone that is cured of all symptoms.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I was found critically deficient in D. I have 2 LLMD's and there are several things that cause this, (most of us do not eat foods that contain D, I now buy "fortified" with D products) toxin binders such as chitosan, cholestyramine , lack of sunlight, PPI's like prilosec, nexium etc.
There is literally an epidemic of Vit D deficiency.
Doctor's usually have you do what is called "loading" like 50,000IU's once per week until you are in the normal range.
I chose not to load and simply do 2000Iu's per day and it is coming up about 5 points per month.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Interestingly, I just got a new bottle of Jarrow fish oil-derived Vitamin D3, 400 i.u. per softgel.
It says right on the bottle NOT to take more than 1 capsule per day without medical supervision.
I don't remember ever reading any kind of warning like that on any Vitamin D product in the past.
I have no idea if this is significant or not....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Tracy, interesting. I just pulled my Country Life liquid Cal/Mag & D3 out to see about any warnings. No warnings like you seen.
This product also claims D3, 400iu per serving. 100% of RDA. I had been taking another D3 supplement for a few months. It was an additional 1000 iu I believe.
I decided to stop the additional Vit D3 and just do a Vit D extra supplement. I like to change up my mix every so often. Sometimes taking the same thing for months on end is not beneficial for me. Also hopefully soon we will see some sun in this part of the country and I can get out for 15 minutes a day for my D3. Fingers crossed.
I know that Vit ABCDE are the key vitamins for health and aging, chronic illness. I was taking a great multi-vitamin & mineral for months. Now I've changed things up some.
I'm doing B's, B12, C, D, E individually now. Also doing Omega 3-6-9 great quality product. Of course I'm doing my Theralac proboitic and Xango. I'm doing some Mt Capra Goat Whey for my minerals.
My doctor always gets a copy of everything I'm taking when I visit him. That lists includes all supps, chlorella, anything I'm doing. Including iu, gm, cgm, dosage anything.
My new lists for my doctor have three headings, daily-supplements-when needed. I list everything under the proper heading including ibuprohen (sp) usage and how often.
So that way my doc knows what I'm taking and using. Sometimes he recommends stuff. Sometimes he can't think of anything to add. I'm blessed with a doctor who knows another medication for some symptom I'm experiencing is not going to happen unless there is no alternative for it.
I recently seen someone on this site recommended pycnogenol for restless leg/arm/torso episodes at night. He gave me samples of another drug for those episodes. I was only having them once a month. I'm not going to take another drug if I can find something else safer for me.
I took pycnogenol for two months. I haven't had a restless leg/arm/torso night since????? I hope I never have one again. How painful. I can't image dealing with that one more often, like so people.
Was it luck or helped whatever my body needed? I don't know. Only time will tell.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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. This has been really helpful. I am glad my Dr found the Vitamin D problem and was kinda hopping that may be the only problem. I guess it is just reafirming my thoughts about Lyme.
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