For those who tested low for Vitamin D, would you mind sharing what symptoms you attributed to your Vitamin D deficiency? (What improved when you supplemented the D?)
Thanks so much for sharing...I really appreciate it...
Posted by sutherngrl (Member # 16270) on :
My story is a little long, but will try to shorten.
Before I knew that I had LD, I found out my D was extremely low, in the teens. My endocrinologist gave me prescription D, 50,000 IUs 2x a week. Within a few months my D was extremely high, way too high, and the D was withdrawn. My main symptom had always been fatigue, but for about 6 weeks during the high D time the fatigue was practically wiped out. I felt great!
Once the D returned to a normal level however, I was really hit hard with all the Lyme symptoms. This is when I became sicker than ever.
After much research, I learned that D becomes a hormone similar to a steroid in the body. This is probably why I felt so much better; but at the same time I believe it did it's damage and thus why I became so very ill afterwards.
Now I am very careful where D is concerned. I take a multi vitamin with 400 IUs of D and I add in about 5000 more IUs a week.
I have no idea what my D level is now and actually don't care that much. I think when the Lyme is gone, my vitmin levels will gradually return to normal.
Posted by Bugg (Member # 8095) on :
Southerngirl--
I'm so sorry to hear of your trouble with Vitamin D therapy...Ugh....
My story is almost the opposite of yours...Due to long-term abx treatment and lyme, my levels of Vit D actually dropped....
I kept predominantly attributing my muscle cramping, fatigue, and twitches to my low mag levels not realizing that Vit D deficiency can cause these symptoms as well....It's been a double-whammy for me....
I've also been very homebound which doesn't help with Vit D and I have a lot of Cherokee Indian in my background which gives me more pigmentation (blocks the Vit D absorption)....
In short, I guess what I'm trying to say is that the lyme, abx treatment, and homebound situation stripped my body of Vitamin D (and magnesium) and now I have to replenish it....
I would encourage all chronic lyme patients to test their Vit D levels, especially those who constantly wear sunscreen or who are of darker skin pigmentation....
Posted by disturbedme (Member # 12346) on :
I have Vitamin D deficiency but not really sure what symptoms I'd attribute to it, if any... I know that taking Vitamin D supplements seems to make me feel slightly better most times... but by better, I mean overall... making me feel clearer and more energy slightly.
Posted by dguy (Member # 8979) on :
I assume you are talking about 25D, which is the form most commonly tested. Most lymies are low in it because it is converted to 1,25D by the infection. That pushes 1,25D high.
My experience was similar to that of sutherngrl. Supplementing D reduced my symptoms slightly, but I was even worse when I stopped. Steroids did the same, but were even more powerful. Steroids damp down the excess immune response we get from lyme, which is why things like vit D can make us *feel* better while actually letting the infection grow worse.
Due to the unusual synergy L-form bacteria have with vitamin D, the rules for vitamin D supplementation are reversed for us compared with non-infected people. This is also true in other L-form illnesses like sarcoidosis.
For more info, look up Th1 disease.
Posted by btmb03 (Member # 18394) on :
So...a high value of 1,25D means..infection?? Sorry, I'm confused. Posted by nomoremuscles (Member # 9560) on :
Dguy,
This is all MP propaganda. There is no evidence that CWD are "energetically" converting 25-D to 1,25-D in Lyme.
The MP works for some patients, but this claim has never been proven. In fact, none of their claims have been proven.
Posted by dguy (Member # 8979) on :
Most of us here have low 25D and high 1,25D. Since very few illnesses are known to cause such a combination, it's easy to narrow the list down to infection with L-form bacteria such as lyme. Don't take my word for it, do the research. I did to convince myself, and it matches my symptom and treatment experiences. I'm finally, slowly recovering.
Posted by maureen2174 (Member # 11471) on :
Just wondering, for those of you who have a hard time supplementing (getting worse when stopping) would this also apply to getting it through sunlight?
I try to spend a lot of time outdoors when the weather is nice and I feel so much better from the sun.
I ordered a light to see if this would help in the winter months. I do not have any interest in supplementing with a pill.
Any thoughts?
Posted by Bugg (Member # 8095) on :
Maureen--
In reading the medical abstracts re vitamin D deficiency, it appears that getting it through the sun is a good way of restoring your levels...However, if you are quite low in Vitamin D, you may need to heavily supplement (obviously, you may have objections to this as you say you don't want to take a pill)....
Just remember that some people are so low that it can take quite some time to restore their levels to normal.....Many patients with low vit D who take the 50000IU as prescribed take months before their levels go back to the normal range....
Posted by Bugg (Member # 8095) on :
Someone also asked about Vitamin D deficiency symptoms: Many with low D levels describe it as an aching, migrating muscle pain, sometimes neuropathy (burning in hands and feet), sometimes joint pain, sometimes "deep bone" pain....
Some have said it feels as if their shins are aching/some say stabbing pains in shins/hips...
Ughhhh...Like so many things, it mimics many of the lyme symptoms...
Testing is pretty straightforward so I would get the 25D test....
On a website, fightingfatigue.org...there's a vitamin D deficiency article with many posts from people describing their vitamin D deficiency issues....Takes many of them months of supplementating before their muscle pain/bone pain lessens....
Posted by nomoremuscles (Member # 9560) on :
dguy
There are way too many possible reasons for high 1,25-d and low 25-d that are understood, let alone those that are not yet understood. Suppose, for a moment, that people with intracellular infections need more 1,25-d to produce additional anti-microbial peptides, and to spur apoptosis, and to lower the resulting inflammatory cascade. And that, just maybe, the body is making the 1,25-d *for a reason* -- and suppose it is not the CWD making the 1,25-d at all. ??
Many doctors and researchers seem to think so. And many patients herx pretty severely from adding vitamin d, and have to ramp up to high doses very slowly. What is the right answer here? -- I don't pretend to know. But to suggest that TM has it all figured out, based on a bunch of theoretical bits and pieces that have never been proven out, seems to be a stretch. Especially when many patients do not respond as the model suggests.
For instance. According to MP lore, those with this "dysfunction" should not be able to raise their 25-d simply by sunbathing, as the 25-d will be energetically be converted to 1,25-d. But, at this point, many ex-MPers have proven this to be false. Many, myself included, have managed to raise our 25-d, without a subsequent lift in 1,25-d, by sun exposure alone. No supplements. No d foods. So how does that work?
Check out this link, many of the comments are from people who have raised their 25-d by sun exp.
Click here: The Heart Scan Blog: The Marshall Protocol and other fairy tales
A theory that may or may not prove true for sarc, does not necessarily prove true for other infectious diseases. In most cases, I would argue, it has proven disastrously untrue for Lymies. Though, there are cases, like yourself, who seem to do well on this therapy -- I don't argue that -- most Lymies have failed pretty hard. What I do argue is the reason for the successes is known.
Could it be the abx combos alone? Or the benicar? Or the d deprivation? Or must it be the combo of these things? No one has tested the pieces separately to my knowledge.
Sorry to derail this thread, Bugg.
Posted by nomoremuscles (Member # 9560) on :
I don't know why that link didn't work. Sorry.
Posted by Pinelady (Member # 18524) on :
What we may forget is the fact that in autopsy's the number one site for finding the bug is in the bone marrow.
Does anyone remember the week or day they got there?
I believe that should be included in the question if you don't mind?
I am curious. Does anyone recall a bout of severe bone pain, muscle cramps after a bout of the flu like illness,
Maybe weeks or a few months after?
Do they have a maturation phase they go thru before they invade the marrow and ingest the Vitamin D?
Or is it by the blood trail they get there?
If we could pinpoint the symptoms, we might could prove method of infection rendering Vitamin D deficiency.
My doctor said I had to have the deficiency I had for a long time to be as low as it was.
I deny that. I got sick fast and I knew when it invaded me.
Posted by Lymeorsomething (Member # 16359) on :
According to some here on the board, the prescription mega doses (50,000 IUs) are actually D2 and not D3. This may have accounted for your initial good response followed by a crash. Some would say to supplement with D3 only. Another poster, DoctorLudditte, knows a lot about D but I haven't seen him on the board in a while....
Posted by Cold Feet (Member # 9882) on :
Bugg, I can't answer your question - because I started herxing/cleaning/killing bugs when my D level(s) dropped. I've been on the MP now for 27 months, and went from being bed-ridden to functional - but it was a gradual, painful process. I now have my life back.
Call it ``lore'', theory or whatever you want. But the MP has worked for me! When my D levels came down as I was in phase 2, I had dramatic experiences, e.g., coughing up all kinds of phlegm. Much of my bacterial load was in my throat and lungs, but I've long since recognized immunopathologies in my spine, shins, joints and (yikes) brain.
My afflictions were mycoplasma pneumonia; but probably included bartonella, Lyme and a partridge in a pear tree.
Hope this helps. You should also search forum for ``D'' and related terms. There are myriad topics on this interesting & complicated issue.
Posted by VeryNew2Lyme (Member # 18958) on :
My level was <7 which is the lowest reported by LabCorp. I was given 50,000 IU in the hospital last week and am supposed to take this dose for each week for the next 10 weeks and then recheck the level.
I'm very sick with LD and Co-s. I read that low levels are also associated with mood disorders which I'm learning is associated with Lyme.
Shannon
Posted by Bugg (Member # 8095) on :
For those like VeryNew2Lyme who started supplementing with D, did you get a herx-like response?
For me, at first, it intensified the aching in my muscles and also the reverberation/pulsating feeling I have in my body...
I've been reading other non-lyme patients' posts re vitamin D deficiency, and some of them expressed they had an initial intensification in symptoms when supplementing....Then, especially after the third week at 50000 IU, they started to feel better....
Anyone have an initial intensification? If so, what happened?
Posted by Bugg (Member # 8095) on :
up for responses
Posted by jenin98 (Member # 12617) on :
Bugg, my doc gives me vit d3 injections every time I see him in NY. I also get vit C drip each time I see him. Doesn't your doc give you the vit d3 shots? what brand of vit D do you take? Jenin
Posted by lymeinhell (Member # 4622) on :
I was just tested for D25 levels in December. I was a 32 on a 30-100 scale. Was told to supplement D25, 1000mg four times a day. My D25 two mos later was a 45. Dr happy about it.
What changed? I no longer crave dairy. I no longer have shin pain either. And seem a bit happier for some weird reason. Not that I'm an unhappy person. Just seem less stressed at work, when I should be frazzled.
Posted by Cold Feet (Member # 9882) on :
Interesting topic Bugg. So why is it that some people do better by abstaining from D, and others do not? It's really puzzling.
Are some people seeing palliative benefits short term? Has anyone with chronic Lyme been healed with D? If D is a secosteroid, how can it help the immune system do its thing?
I have more questions than answers at the present time...
Posted by Kreynolds (Member # 15117) on :
I have a Low Vit D level.... I have been taking 1,000 I.U. Daily. My Endocrinologist told me what also helps is getting out in the sun or sitting by the window where there is sun. To be honest I'm so sick from the Lyme and the Coinfections I cannot see a difference....
Posted by Bugg (Member # 8095) on :
Thanks so much for all the great responses...
I realize for those adhering to the MP, that Vitamin D therapy isn't for you....
For those, however, interested in vitamin D, I strongly earge you to get the D25 simple bloodtest....You cannot comprehend how much low vitamin D can cause your muscles to ache and shin bone pain and increase your fatigue....
Like I stated previously, uncovering my low levels of vitamin D and low tissue/bone levels of magnesium and aggressively supplementing has brought me out of non-stop, horrible suffering....
Please remember, ESPECIALLY IF YOU LIVE NORTH OF ATLANTA, that this time of year it's very difficult for you to get enough D from the sun....Also, remember that an SPF of 8 blocks 95% of the D you need....
Kreynolds, in my humble opinion, 1000 IU daily is quite a low dose for low vitamin D levels....Many who are low take 50000 IU by prescription at least once or twice a week to start....I encourage you to go to Google Scholar and read many of the medical abstracts about supplementing for low vitamin D levels...Then, discuss with your doc.....Also I don't know this time of year if you're getting enough D from the sun in New Jersey.....
Posted by mjo (Member # 7876) on :
I just about died on Vitamin D supplements. I went from somewhat functional Lyme to barely being able to get out of bed.
My blood Vitamin D levels are about 13-14.
The second time I tried supplementing, I used D3 and an expensive one. That Lyme doc said maybe I was sensitive to the plant sterols, so I should try again on this other type of D.
So I was dumb enough to do it. Same thing, crippling joint, muscle, and maybe bone? pain.
After weeks of trying to tough it out at the smallest dose, 5000 units, I just couldn't take the pain any longer.
Say what you want about the MP, but I think there's lots of truth to it. It might be that some of us have far more L-form/CWD forms of Lyme AND other bacteria than those who are able to tolerate Vitamin D supplementation.
By the way, I was recently on minocycline, which just about killed me. After I was forced to stop, I realized that mino is the MP drug of choice and that I may have inadvertantly been on the MP which is known to cause death-defying herxes unless the mino is used at the tiniest doses. What an idiot I am not to have recognized what was happening!
I think though, that with regard to the MP, sun exposure is totally different than vitamin D supplementation. I do fine with some sun.
P.S. I call death-defying herxes those that you nearly pass out from.
Posted by dguy (Member # 8979) on :
robi - received your message, but am unable to reply since your mailbox is full
Posted by Kreynolds (Member # 15117) on :
Bugg:
Yea I know its a low dose... my doctor wont give me anything higher because all the meds im on... Thanks for the response!!!
Posted by Bugg (Member # 8095) on :
MJO--
So sorry to hear about your struggles with Vitamin D and your severely low levels...I cannot imagine the muscle pain and stiffness you must be in with that...
If you ever want to revisit supplementing with Vitamin D again, you might want to start with a much smaller dose.....no more than 1000 IU to start... I can see why 5000 IU gave you such an increase in pain. If you go to the site I mentioned earlier in this thread, you can see where many patients, most non-lyme patients, had an increase in an intensity in their pain with initiating vitamin D therapy....I had the same thing occur and had to work up to a larger dose...I couldn't imagine starting at 5000 IU...ugh... (incidentally, I had the same reaction when I started heavily supplementing through orals, IV, and IM my very low RBC levels of mag....now I barely react to it).....
Anyway, I completely respect the fact that you may not want to try vitamin D....I just wanted you to know I'm not surprised that your body reacted in such pain because 5000 IU isn't really a small dose and your levels are so low...You might want to discuss this with an endocrinologist who could also help with pain management as you try to increase the dose...
I hope you feel better and I'm very sorry you're in such pain.....best of health to you...
Posted by METALLlC BLUE (Member # 6628) on :
I was prescribed Vitamin D. My specialist in NY recommended I begin supplementing immediately. My number was a 9.
At any rate, I'm having a Herxheimer reaction right now since I'm on 200mg of Minocycline as well as Mepron, Valtrex, Azithromycin, and Plaquenil.
I'll let you know how it goes.
Posted by Bugg (Member # 8095) on :
From the Vitamin D Council's website:
Vitamin D and Your Health Deficiency
Vitamin D Deficiency SyndromeAbstract
We propose Vitamin D Deficiency Syndrome (VDDS) exists when 25(OH)D levels of less than 25 ng/mL are found in patients with two or more of the following conditions: osteoporosis, heart disease, hypertension, autoimmune diseases, certain cancers, depression, chronic fatigue, or chronic pain. VDDS is more common among dark skinned races, the aged, and those who avoid the sun.
Serum 25(OH)D levels are obtained when the disorder is suspected. Serum 1,25(OH)2D3 levels have no place in diagnosing the syndrome and will mislead the physician. Sunlight, artificial light, oral or parental vitamin D, or a combination, aimed at restoring circulating levels of 25(OH)D between 35-55 ng/mL is the treatment of choice. Controlled sunlight is the safest form of vitamin D repletion. Vitamin D3 cholecalciferol is the preferred form of oral vitamin D.
Vitamin D is safe when used in physiological doses (those used by Nature). Physiological doses are 3,000-5,000 IU per day, from all sources (sun, diet, and supplements). Should hypercalcemia occur with such doses, it is due to vitamin D hypersensitivity syndrome, not vitamin D toxicity. Vitamin D hypersensitivity syndromes include conditions such as primary hyperparathyroidism, occult cancers (especially lymphoma), or granulomatous disease (especially sarcoidosis). In such cases, treatment of vitamin D deficiency should be done under the care of a knowledgeable physician. A serum 25(OH)D, serum 1,25(OH)2D3, PTH, and SMA will lead the clinician in the right direction.
What a "Syndrome" IsWebster's Dictionary defines a syndrome as a "group of symptoms or signs typical of a disease, disturbance, condition, or lesion...a set of concurrent things" while a disorder is a "derangement of function: an abnormal physical or mental condition." Webster's Third New International Dictionary, Unabridged. Copyright 1993 by Merriam-Webster, Incorporated.
Stedman's Medical Dictionary defines syndrome as "the aggregate of symptoms and signs associated with any morbid process, and constituting together the picture of the disease."
Osteoporosis, heart disease, hypertension, autoimmune diseases, certain cancers, depression, chronic fatigue, and chronic pain comprises potential manifestations of the VDD syndrome. That is not to say these illnesses are caused by vitamin D deficiency, nor that repletion of the vitamin D system will cure these illnesses. At this point, all that can be said is that these illnesses are associated with vitamin D deficiency.
D Deficiency-Illness LinkIn a series of upcoming posts to this website, we will use the following five criteria to link each illness in VDDS with vitamin D deficiency: epidemiological evidence the incidence of each illness subsumed by VDDS has increased as UVB exposure has lessened. evidence that each illness subsumed by VDDS is associated with low 25(OH)D levels. evidence that the illnesses comprising VDDS show significant co-morbidity. theoretical models that explain how vitamin D deficiency plays a causative role in each illness of VDDS. clinical evidence that treatment with physiological doses of vitamin D improve each illness in VDDS. Using these five requirements, we propose that Vitamin D Deficiency Syndrome, or VDDS, exists when 25(OH)D levels are less than 25 ng/mL in patients with two or more of the following conditions: osteoporosis, heart disease, hypertension, autoimmune diseases, certain cancers, depression, chronic fatigue, or chronic pain.
VDDS is a group of diseases that are associated with chronic vitamin D insufficiency, and which cause a significant derangement of function. VDDS is more common among blacks, the aged, and those who either avoid the sun or are deprived of it.
Multifactorial IllnessIt is important to clearly state once again, we are not saying these illnesses are all caused from vitamin D deficiency; they are all multifactorial illnesses. We are not saying that vitamin D will cure all these illnesses; it will not, although it may help. We are only saying that evidence exists for a dictionary definition of a syndrome that associates vitamin D deficiency with these illnesses. Scientific evidence currently exists that some of these illnesses may be caused by vitamin D deficiency. Furthermore evidence exists that some of these illnesses may be helped by vitamin D repletion. The current evidence varies with each illness.
For example, strong evidence exists that vitamin D reduces osteoporotic fractures, but only two small studies exist to show vitamin D helps depression.
However, those practicing medicine are not practicing science. Scientists practice science by conducting controlled experiments. Physicians practice medicine by making clinical decisions. Clinical decisions are always made using a benefit versus risk analysis, with current scientific knowledge as the cornerstone of the decision making process. Practicing physicians use this formula in every clinical decision they make, with every patient and do so many times a day. They need to make the same decision concerning VDDS and vitamin D repletion.
John Jacob Cannell MD Executive Director 2003.12.27
Posted by METALLlC BLUE (Member # 6628) on :
Tell that to the IDSA:
quote: However, those practicing medicine are not practicing science. Scientists practice science by conducting controlled experiments. Physicians practice medicine by making clinical decisions. Clinical decisions are always made using a benefit versus risk analysis, with current scientific knowledge as the cornerstone of the decision making process. Practicing physicians use this formula in every clinical decision they make, with every patient and do so many times a day.
Posted by Bugg (Member # 8095) on :
If you are obese, even if you live in a sunny area, you may need HIGHER LEVELS OF VITAMIN D DUE TO MALABSORPTION:
Current Opinion in Endocrinology and Diabetes:Volume 13(5)October 2006p 412-418 Vitamin D deficiency in obesity and health consequences [Obesity and nutrition] Holick, Michael F
Department of Medicine, Boston University Medical Center, Boston, Massachusetts, USA
Correspondence to Michael F. Holick, Boston University School of Medicine, 715 Albany Street, MA-1013, USA Tel: +617 638 4545; fax: +617 638 4545; e-mail: [email protected]
Abstract Purpose of review: As obese adults often have normal bone mineral density, vitamin D deficiency is not considered to be a major health issue for them. It is.
Recent findings: Vitamin D deficiency, common in obese children and adults, has been linked to decrease in outdoor activities, avoiding vitamin D fortified foods and the irreversible sequestration of vitamin D by the large pool of body fat. Vitamin D deficiency is associated with muscle weakness and aches and pains in the skeleton, and may alter insulin secretion and sensitivity.
Summary: Obese children and adults are often less active and suffer from muscle weakness and bone aches and pains which further decrease their activity and increase their potential for being more obese. Vitamin D sufficiency has been linked to insulin secretion and insulin sensitivity, and, thus, vitamin D deficiency may exacerbate type II diabetes. Monitoring for serum 25-hydroxyvitamin D and treatment with pharmacologic doses of vitamin D typically 50 000 IU of vitamin D2, once a week for 8 weeks followed by every other week will often correct vitamin D deficiency and maintain a normal vitamin D status. Patients with a body mass index of over 30 may require higher doses or more frequent dosing with vitamin D.
Posted by mjo (Member # 7876) on :
Bugg. Geez, I thought 5000 was a low dose from some of the posts. Thanks to you, and my chiropractor--he's so smart! I may have to consider taking some Vitamin D again, but I will start very small. How small do you think? And how often?
Met Blue. I agree with your tell it to the IDSA! Maybe Bugg, you should cut and paste that info in a letter to complain about the make-up of the Guidelines Review Panel?
Met Blue. How's it going? Sounded like you were in for it!
Thanks for your posts. I like science I can understand!
Posted by heatherliveswithlyme (Member # 14890) on :
My husband and I were low on vitamin D. For some reason our family Doctor not a LLMD is noticing everyone in our area seems low.
There are new studies about Vitamin d difficiency. So now we are both taking 2000 I.U. gelcaps as per the non-LLMD.
My LLMD is cool with it.
Posted by Bugg (Member # 8095) on :
MJO--
I would recommend that you start very slowly with the Vitamin D...no more, at first, than 1000 IU a day of D3 just to see how you respond....It is soooooo common for lyme patients to herx with Vitamin D as it has anti-microbial properties and makes a cytokine-like hormone.......Vitamin D mobilizes calcium and phosphate from bone for resportion ....It also stimulates muscle cell uptake of inorganic phosphate for ATP (energy) production....
If you have sarcoidosis or hyperparathyroidism or kidney or pancreatic dysfunction, you need to be under the care of a physician and let him decide whether or not D should be administered..........D is often contraindicated where hypercalcemia can occur....
Good luck and I hope you feel better...Since youre levels are so low, it may take quite some time before you feel any difference...
Good luck
[ 02-18-2009, 03:15 PM: Message edited by: Bugg ]
Posted by METALLlC BLUE (Member # 6628) on :
My LLMD denounced the Marshall Protocol yesterday during my appt when I asked about it. I see Dr. H and his PA's in NY
Posted by Bugg (Member # 8095) on :
Hey Metallic--
How are you doing so far on supplemeting with the Vitamin D? Are you "herxing" from it....having more pain/aching/fatigue/shooting pains???
Thanks
Posted by METALLlC BLUE (Member # 6628) on :
That's a difficult question to answer since I just began Babesia treatment, and a number of new medications, including Minocycline, Zithromax, Plaquenil, Valtrex, Mepron etc.
So Vitamin D added in will be impossible to differentiate.
-- Mike
Posted by DoctorLuddite (Member # 13853) on :
MJO, start with a 400 Iu dose, double it every 3 days to a total of 2000 IU/day, if you start herxing, back off by 400 IU...Since 25 OH D is converted by the kidneys into 1,25 diOH D, a very potent hormone, it is not surprising that metabolic activity in the bones would suddenly increase, and this change might manifest as pain. If you are sensitive to even 400IU, check the 1,25 di OH D, if high, MP is for you.
I was stiff all over in 10/06 after an MVA, was taking D as sunlight made me feel better, but it wasn't until I quit coffee cold turkey AND added a tanning booth to the regimine that I developed a stiff painful back for the better part of three days. When this subsided, I felt 10 years younger.
Everyone has to find their own way, but observe your disease, the answer is often in the evolution of it. If symptoms start and progress through the fall, there is likely a vit. D component.
Posted by seekhelp (Member # 15067) on :
I asked my holistic doc to re-test Vit D 25 and 1.25 levels and he agreed. I had the blood drawn today. It'll be interesting to see if 6,000 IU of D3 for 3 months did a thing to help my levels. I'll report back.
Posted by Bugg (Member # 8095) on :
Has anyone been able to find any medical abstracts or talk with a physician about why some people, especially lyme patients, often have an intensification of symptoms (muscle aches, stabbing pains, or fatigue) when trying to take Vitamin D??? I know other patients low in D can experience this as well so it makes me think it's more than just "die-off".....It's just frustrating not understanding the physiology behind this....Wish there were published studies...
Posted by mjo (Member # 7876) on :
Bugg and Doc Luddite (Doc, where have you been? You've been missed.) If I do decide to risk Vitamin D I will heed your warnings and start very slowly.
I do have something wrong, maybe besides Lyme and co-infections, that makes me extremely sensitive to vitamins and mineral supplementation. Could it be sarcoidosis? I will try to look for posts on that.
Examples of my weird problems: Eons ago when medicine suggested Tums as a good cheap source of calcium for women, I tried it. Within three days, I would have shin and shoulder joint pain that was unbearable. I tried several times and it was simply not worth it.
The last time I tried a B-12 shot, the same things happened--unbearable pain, so I haven't done that for a long time either.
I get worse on fish oils, much much worse on probiotics, can't take NAC, Alpha Lipoic Acid, Gingko, or Milk Thistle, all the things that are supposed to help. Caffeine is out too except once in a while as it gives me heart pain.
Just think of the poor LLMD who has to deal with me!
Bugg, yes we need some more info on Vitamin D problems. Wonder how many people are suffering from them with the HUGE push on Vitamin D that's going on?
Posted by klutzo (Member # 5701) on :
I just want to mention, as someone who has studied Naturopathy, that the vitamin D normal ranges were developed using an already deficient population from cloudy northern Europe.
In Naturopathy, we use vit. D ranges developed from testing indigenous populations, ie. those Aboriginal peoples who still live on their natural diet, and unlike us, are healthy all their lives until they acquire the illness that kills them. Their vit. D levels are much higher than ours.
In Naturopathic medicine, the bottom acceptable level of vit. D is 50. For a healthy person, maintenance level is 65. To prevent cancer, you need a level of 80. The normal range is 50-100. The person I know who has most recovered from this illness has a vit. D level of 85.
When I stopped going out in the sun due to constant stings and insect allergies, my vit. D level dropped to 31. I now take 4,200 units daily, to try and raise it up.
Since I only get my level checked every six months, I am afraid to take too high a dose, though I most likely need more, since I am also fat.
I have started going in the sun again, since that is a much safer way to get vit. D, but if I get stung and have even one more trip to the Emer. Rm. that will be the end of that!
BTW, most of you know that your skin will make no more vitamin D from sun than it needs, but you also need to know that you need to wait at least an hour before showering after being out in the sun, or you will wash away the vit. D before it's absorbed!
I also want to mention that I have two positive Lyme tests, yet my 1,25D has stayed only 3 pts. higher than my 25D through years of testing, which does not fit with the MP theory. I also have had no herxing with supplementation.
I cannot tell if I have any symptoms from low vit. D, since I have fibromyalgia and the symptoms are the same. I do have painful shins when pressing on them, which is what Naturopaths often use as a preliminary test.
klutzo
Posted by DoctorLuddite (Member # 13853) on :
I disagree that you have to wait to shower after sun exposure, the vitamin D is made from cholesterol in the subcutaneous sub melanin layer and is picked up by the lymphatics to then be funnelled into the blood. Best thing to do after sun exposure is light aerobic exercise, that increases lymphatic return to the circulation.
Posted by imagine2 (Member # 3136) on :
I have low 25OH and high 1,25 Dihydroxy results. I take 10,000IU daily of D3 and one of my docs wants to increase it to 20,000IU 2 days a week. Am a little uncomfortable with that. What do you guys think?
Also, I've heard that low 25OH and high 1,25 indicates bacteria. Anyone know for sure?
Posted by Bugg (Member # 8095) on :
MJO--
Since you have so many sensitivities, perhaps administration of Vitamin D would be best under the direction of an Endocrinologist. He could also test you for other potential hormonal/metabolic/hyperparathyroid issues. I don't know if you have gastrointestinal problems but that can attribute to malabsorption issues (don't know if you have Celiac's disease which causes gluten intolerance and malabsorption---people with Celiac can have low B12 and Vitamin D).....I guess what I'm trying to say is that with a case as complex as yours I would see an Endocrinologist about your low D levels and start from there. Good luck.
Imagine2---Are you taking over-the-counter or prescription?
Posted by Bugg (Member # 8095) on :
The Test --------------------------------------------------------------------------------
How is it used? When is it ordered? What does the test result mean? Is there anything else I should know?
How is it used? 25 OH Vitamin D tests are used to determine if bone weakness, bone malformation, or abnormal metabolism of calcium (reflected by abnormal calcium, phosphorus or PTH tests) is occurring as a result of a deficiency or excess of vitamin D.
Since vitamin D is a fat-soluble vitamin and is absorbed from the intestine like a fat, vitamin D tests are sometimes used to monitor individuals with diseases that interfere with fat absorption, such as cystic fibrosis and Crohn's disease, to assure that they have adequate amounts of vitamin D. Vitamin D tests are sometimes used to determine effectiveness of treatment when vitamin D, calcium, phosphorus, and/or magnesium supplementation is prescribed.
When is it ordered? 25 OH Vitamin D test If calcium is low or the patient has symptoms of vitamin D deficiency, such as bone malformation in children (rickets) and bone weakness, softness, or fracture in adults (osteomalacia), the 25 OH Vitamin D test usually is ordered to identify a possible deficiency in vitamin D. 1,25 di OH Vitamin D test If calcium is high or the patient has a disease that might produce excess amounts of Vitamin D, such as sarcoidosis or some forms of lymphoma, the 1,25 di OH Vitamin D test usually is ordered.
Vitamin D tests also may be used to help diagnose or monitor problems with parathyroid gland functioning since parathyroid hormone is essential for vitamin D activation. When vitamin D, calcium, phosphorus, or magnesium supplementation is necessary, vitamin D levels are sometimes measured to monitor treatment effectiveness.
What does the test result mean? NOTE: This test has no single number that identifies an abnormal result. Your lab report (see a sample report) should include a range of numbers (reference range) that identifies what is expected for you based on your age, sex, and the method used in that laboratory. You can find more information about expected results at Reference Ranges and What They Mean. Lab Tests Online strongly recommends that you discuss the meaning of your test results with your doctor.
25 OH Vitamin D test Low blood levels of 25 hydroxy Vitamin D may mean that you are not getting enough exposure to sunlight or enough dietary vitamin D to meet your body's demand or that there is a problem with its absorption from the intestines. Occasionally, drugs used to treat seizures, particularly phenytoin (Dilantin), can interfere with the production of 25 OH Vitamin D in the liver.
High levels of 25 hydroxy Vitamin D usually reflect excess supplementation from vitamin pills or other nutritional supplements.
1,25 di OH Vitamin D test Low levels of 1,25 di OH Vitamin D can be seen in kidney disease and are one of the earliest changes to occur in persons with early kidney failure.
High levels of 1,25 di OH Vitamin D may occur when there is excess parathryoid hormone or when there are diseases, such as sarcoidosis or some lymphomas, that can make 1,25 di OH Vitamin D outside of the kidneys.
Is there anything else I should know? High levels of vitamin D and calcium can lead to the calcification and damage of organs, such as the kidneys, as the body tries to lower blood calcium levels by depositing calcium phosphate compounds into the organs.
If magnesium levels are low, they can cause a low calcium level that is resistant to vitamin D and parathyroid hormone regulation. It may be necessary to supplement both magnesium and calcium to regain normal function.
Posted by METALLlC BLUE (Member # 6628) on :
Imagine2: That's a normal dose for someone with low numbers.
Posted by Bugg (Member # 8095) on :
Consult with your health care provider first, before using vitamin D, if you have any of the following conditions: sarcoidosis, primary hyperparathyroidism, granulomatous disease, or other conditions that cause high blood calcium..
I don't know whether Bartonella should be added to this list as there have been a couple of medical abstracts where the active form of Vitamin D was found to have been upregulated (don't know if that was just in the initial stage of the disease, though)....don't know whether Bart patients have typically found upregulated Vitamin D and potentially higher calcium levels....(I don't have this coinfection and so I have not researched it very much)..Hopefully someone with more knowledge about Bart will post....
Posted by Bugg (Member # 8095) on :
Great article by Dr. Holick discussing Vitamin D....there's even a section which discusses a man with twitches (fasciculations) and muscular disorder diagnosed as ALS which was actually vitamin D deficiency....he completely recovered when he replaced his D levels....
quote:Originally posted by Bugg: Consult with your health care provider first, before using vitamin D, if you have any of the following conditions: sarcoidosis, primary hyperparathyroidism, granulomatous disease, or other conditions that cause high blood calcium..
And since sarc and lyme are similar illnesses with a similar cause (as discussed in another thread), those with lyme also need to be wary about supplementing with D. For those with either sarc or lyme 1,25D is often high while 25D is low. It's wise to have 1,25D tested to know if you too are experiencing D disregulation like most lymies.
Posted by mjo (Member # 7876) on :
Bugg, Doc Luddite, all who are trying to help, I looked at the Vitamin D I took before that caused me so much pain and it was 40 units! Taking one every day crippled me in about a week.
The 5,000 units of expensive D3 I tried next was horrible too.
What do you think is wrong?
Thinking about getting the little bit in some good cod liver oil. What do you think about that?
Cod liver oil has lots of Vitamin A too, something I know I am deficient in, think lots of us are from Lyme but have no proof. Deficiencies in A have been linked to night- blindness, right?
Posted by landerss (Member # 17732) on :
hey dguy, i just posted a similar question to jmb on the other D thread, but thought i'd also ask you:
according to what you've learned, what lab values do you think constitute a high D 1,25? and a low D 25? mine, taken last month, were 45 (1,25) and 39 (25) - do you think that makes me a candidate for trying to reduce (or at least not supplement) with D3? i've been supplementing D3 for several years...
thanks for any advice - this is all so confusing!
Posted by djf2005 (Member # 11449) on :
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derek
Posted by dguy (Member # 8979) on :
quote:Originally posted by landerss: according to what you've learned, what lab values do you think constitute a high D 1,25? and a low D 25? mine, taken last month, were 45 (1,25) and 39 (25) - do you think that makes me a candidate for trying to reduce (or at least not supplement) with D3? i've been supplementing D3 for several years...
If memory serves, those D numbers sound near the center of their normal ranges, and therefore it seems your D is not disregulated.
What has been observed is the worse the infection, the lower 25D drops and the higher 1,25D rises. People who are severely infected usually have a difficult time making their 25D rise via supplemention because the 25D is rapidly converted to 1,25D.
Posted by Bugg (Member # 8095) on :
MJO--
Given the number of your vitamin and possibly hormonal difficiencies, I would go see an endocrinologist for proper testing and treatment. A good endocrinologist can test you for all of these things....parathyroid...thyroid...horomones...vitamin deficiencies...magnesium...calcium...phosphate
(If your phosphate or calcium levels are low, or your alkaline phosphatase is high, this can point to a Vitamin D deficiency)...
If you're severely deficient in magnesium like I was, you might also have disregulation with your Vitamin D....helps to synthesize it....
I appreciate Dguy's Marshall Protocol info on this thread as well...
While I realize the choice to take Vitamin D is a very confusing one, I welcome all input from both sides of the issue...hopefully we'll all figure this out together....
Posted by landerss (Member # 17732) on :
thanks so much for the feedback, dguy!
are you pretty closely following MP in your own treatment?
Posted by mjo (Member # 7876) on :
Thanks Bugg.
Maybe I should get back on magnesium before trying any D again?
Yes, phosphate and calcium issues are evident; I have osteopenia. Alkaline phosphatase rises on antibiotics, though it never goes really high.
The only thing about seeing an endocrinologist is that the one I met (while in the hospital) was hostile to dessicated thyroid. ( I did not tell her I have Lyme.)
I am hypothyroid, but currently off much-needed Armour, after winding up in the hospital with severe and prolonged arrythmias.
The arrythmias did not occur while I was on thyroid medication alone, but when 3 types of abx (each on its own)were tried over the course of three months. I lasted 10 days on two and about 21 days on one.
So, the questions are: was it the abx working on Bb or other TBDs in the heart to cause the problem; was it a question of balance between abx and thyroid; could it be an imbalance of vitamins and minerals causing the arrythmias; or could it be the abx pushing the vitamin and mineral deficiencies over the edge which led to the arrythmias? Or, to throw in another monkeywrench, was it the hormones I take, estriol, estradiol, and prometrium (which I had had no problem with)?
Maybe I shouldn't bore others with all this and PM you?
Thanks!
Posted by Bugg (Member # 8095) on :
MJO--
You might want to go on Mary Shomon's thyroid site where she posts a link to "Armour friendly" endocrinologists/physicians in your area....It really sounds like you need a great endo working with you due to your hormonal/vitamin deficiencies....Could your OBG/GYNO recommend a compassionate Endocrinologist? Even if that endo won't presribe Armour, you could at least go to him/her for testing...Then maybe get your LLMD, based on the results, to prescribe the Armour, if needed...
FYI, I too, had severe arrythmia due to too much Fluconazole which stripped my body of magnesium...
Hang in there and keep fighting for your health!!!
Posted by CherylSue (Member # 13077) on :
Good site for Vitamin D3 supplementation. It's that time of year again.
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