Topic: Vitamin D Testing Errors and Published Studies
Bugg
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Hi Guys--
I know this was posted in the archives but I wanted to repost in case someone didn't see it. Quest Diagnostics incorrectly ran the Vitamin D tests on many patients in 2007-2008. Patients were given falsely elevated scores for their vitamin D levels. My LLMD in New York informed me that I was one of them. Ugh...Anyway, I tested at 36 and he said it was probably much lower than that....How low? I have no idea...
For what it's worth, I just spoke with Dr. Cannell at the Vitamin D Council. He says Quest still hasn't fully fixed their issues. He says if you get a result from them you should divide it by 1.3 to get a reading that would be in line with other labs....He says DiaSorin and LabCorp are good labs for Vitamin D tests...
Finally, I have also learned that some endocrinologists are recommending that people in their late 40's should be ideally around 60. Highly overweight people should be at higher levels as well.
I wonder if lyme patients need to be at a higher level in order to feel better. Are our Vitamin D receptors blocked by the borrelia??? Do we need more Vitamin D to stimulate the macrophages to make the protein to kill the foreign bodies? Do our cells absorb the D as well as a healthy individuals? Magnesium aids in the synthesis/conversion of Vitamin D to its active form. Because many of us are low in magnesium, are we having conversion problems???
These are just some of the many questions I have about this. For what it's worth, I've pasted some studies below involving lyme and Vitamin D....not much but it's all I could find...
Please note that I'm just trying to figure this out along with everyone else...Please decide with your doctor whether taking Vitamin D is right for you...I know the Marshall Protocol seems to be working for some on this Board...I'm keeping an open mind about both sides of the coin...
(You can go to PubMed and read the following:)
1: Vitamin D and autoimmune disease. Ginanjar E, Sumariyono, Setiati S, Setiyohadi B. Acta Med Indones. 2007 Jul-Sep;39(3):133-41. Review. PMID: 17699936 [PubMed - indexed for MEDLINE] Related Articles
2: Treponema pallidum and Borrelia burgdorferi lipoproteins and synthetic lipopeptides activate monocytic cells via a CD14-dependent pathway distinct from that used by lipopolysaccharide. Sellati TJ, Bouis DA, Kitchens RL, Darveau RP, Pugin J, Ulevitch RJ, Gangloff SC, Goyert SM, Norgard MV, Radolf JD. J Immunol. 1998 Jun 1;160(11):5455-64. PMID: 9605148 [PubMed - indexed for MEDLINE]
3: 1,25-Dihydroxycholecalciferol inhibits the progression of arthritis in murine models of human arthritis. Cantorna MT, Hayes CE, DeLuca HF. J Nutr. 1998 Jan;128(1):68-72. PMID: 9430604 [PubMed - indexed for MEDLINE] Related Articles Free article at journal site
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Leelee
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Huh. Interesting. My Vitamin D, 25-Hydroxy was tested by LabCorp in July 2008 and it was 28.1
That's pretty low, I think. I am 52 so I don't think this is a good thing.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Bugg
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Leelee
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Thanks for the link Bugg. This low Vitamin D thing just showed up on my blood work. I don't think anyone ever tested me for it before.
I have arthritis in my left ankle and awful pain in my right thigh, neck, and right shoulder.
Looks like there may be a connection.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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I take supplements of Vitamin D...didnt help anything for me.
Vitamin D deficiency is one, if not THE most common deficiency in the country, It causes all sorts of Bone problems. Especially osteoporosis in women. So it wouldn't be surprising if many of us Lymies have low Vitamin D...cause almost everyone does.
If u want to make sure you're getting enough Vitamin D...Cod Liver Oil is supposed to be one of the best.
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Cass A
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Well, Vitamin D didn't work for me.
I was taking it and calcium and magnesium for YEARS and still got major bone loss.
When I took Vit. D supplements, I got very, very itchy eyes, and no relief from my Lyme symptoms.
I got tested at Quest several times, and my 1,25 D was out of range (too high) each time, no matter where my 25(OH)D was.
Best,
Cass A
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klutzo
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Cod liver oil has too much vitamin A in it to be safe at the high amts. you have to take to get enough vitamin D to bring levels up to ideal.
Beta carotene is safe in large amts., since your body can just get rid of the excess, but cod liver oil has actual vitamin A, which is stored.
When there is already bone loss, strontium needs to be taken as well, at least 3 hrs. away from the calcium supps. Take 340 mgs. daily for osteopenia, and 340 mgs. twice daily for osteoporosis.
Be sure to get at least the RDA of calcium while taking strontium, otherwise you will lose bone instead of making more.
Boron, manganese and magnesium are also needed to make bone. We Lymies tend to be even more deficient in Mg than we are in vit. D.
Also, never take any supps. in tablet form, since they are poorly absorbed. CA citrate is better absorbed and can be bought in capsule form.
Hypothyroidism is a major cause of bone loss and most labs have not kept up with the change in the normal ranges. If bone loss continues despite good supplementation and weight bearing exercise, this should be looked at.
Many people are being told their thyroid tests are normal when they are not, or they are being undertreated. Some doctors think overtreatment causes bone loss and don't know that undertreatment is even worse for bones.
The thyroid TSH test should ideally run between 1.0 and 1.4. Any level over 2.0 needs to be treated. High TSH dramatically increases the risk of heart attack as well.
In Lyme, hypothyroidism is often secondary to HPA axis dysregulation, so TSH alone is not enough. You also need to test free T3 and free T4, at a minimum.
(I am NOT a doctor, just a patient who studied Naturopathy with emphasis on nutritional medicine for over two yrs. and also has hypothyroidism and osteopenia from Lyme)
klutzo
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METALLlC BLUE
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What is HPA axis dysregulation? How do you resolve it or manage it?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Bugg
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Thanks so much for everyone's posts on this thread...I like hearing the feedback about Vitamin D, good and bad....it's helpful...
I also must caution that I've read you shouldn't take Cod Liver Oil if you're vitamin D deficient because it often contains Vitamin D which actually can work against the D absorption....
Klutzo---that's really a fantastic summary you posted...
I really think that mineral depletion is often overlooked and not well understood in many lyme patients....magnesium, calcium, and vitamin D, for example, all work together for healthy muscle function and bone function..
I am by no means advocating against the use of long-term antibiotics for tbis....I just think it's unfortunate we as a group don't have the data/research to show whether some of our symptoms are from the long-term medications or whether its from the lyme and coinfections or whether its immune system dysregulation....
I, for ex., had no idea that my long-term use of Fluconazole (Diflucan) had caused such a deficiency of magnesium in my bone and muscle tissues until one of the top doctors in the country on this issue discovered the cause....Apparently, my body was alredy low in mag and the long-term Fluconazole made it worse...
Also, I recently learned that Doxycyclene can deplete stores of calcium from the body ....
I speculate that some of these routine "serum" tests are missing issues of mineral deficiencies...For ex., many lyme patients don't test low in calcium (i realize some do)...However, I've also read in medical journals that a person's body will start compensating, slowly over time for that depletion...in this instance, pulling calcium from bone...it won't necessarily show up in a serum test but might in an ionized calcium test....
I've also read where some people have more success replacing their vitamin D deficiency when they add calcium
Of course if you have malabsorption issues, you may want to look into injections....
I know I could not start absorbing calcium and Vitamin D until I got my magnesium levels normalized....
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Leelee
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When my blood work came back from my annual physical that I had with my PCP she very casually told me my Vitamin D was low.
Her advice was to go out in the sun more.
I always had the feeling, though, that something else was causing the Vitamin D shortage.
I am 100% convinced it has to do with Lyme (as yet undiagosed, but my appt. with a LLMD is next month).
My blood work also showed low TSH, low T-3, and low protein levels.
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Abxnomore
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Klutzo has a very good understanding of the issue.
My doctor recently told me that she received a letter from Quest Labs indicating that the problem has been fixed. In the meantime, I had been tested by labcorp.
Sunlight is indeed the best way to get Vitamin D but not always practical depending where you live
and depending what ABX you are on.
Calcium, magnesium, boron, strontium, vitamin K2 and Vitamin D3 all play a role in avoiding bone loss. For us lymies our problems are more complex.
However, research on vitamin D, which in reality is a hormone, is relatively new in the mainstream
medical world. Many Americans are deficient and especially people who are ill, like us.
Ideally, blood levels should be around 50. Low levels are responsible for many aliments, including cancer.
The one I have been advised to use as the most bio absorbable is made by Biotics "Bio D Mulsion Forte".
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klutzo
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Hi Metallic Blue, Your question is a difficult one to answer.HPA axis dysregulation stands for Hypothalmic-Pituitary-Adrenal axis. The following explanation will be oversimplified by necessity. If anyone else has info to add, please do so, and thank you.
The hypothalamus is a tiny master gland in your brain that controls all the other endocrine glands down the line from it. When it is dysregulated, it can cause increases or decreases in needed hormones to cascade down the line, involving all the other endocrine glands in the body.
Research at Brigham and Women's Hospital at Harvard on 3,400 women diagnosed with Fibromyalgia, which I consider to be caused by Lyme in almost all cases, showed that 100% of the women had a dysregulated HPA axis.
In the earliest stages of illness, the HPA axis was shown to be upregulated, which leads to panic disorder, irregular heart rhythms, muscle pain and cramping, insomnia and sleep disorders, low human growth hormone, and a host of other problems.
Later on the axis becomes downregulated and stays that way. This would result in increasing intolerance of temperature extremes, not enough cortisol to keep blood pressure, immunity, and energy up to par, not enough thyroid hormone to keep normal metabolism or bone density, loss of libido, possible early menopause, irritable bowel and bladder, and a long laundry list of other potential problems, including organ damage, that are all too familiar to Lymies.
How to fix it? Therein lies the problem. All we really have at this point, as far as I know, is to individually address each problem as it comes up, and that is where we often run into trouble with conventional doctors, esp. when dealing with the adrenal insufficiency, which they mostly do not believe is real.
Unfortunately, the thyroid cannot be properly treated if the adrenals are not functioning, as adrenal hormones must carry the thyroid hormone from the blood to the tissues where it is needed. Thus, it is possible to have good blood levels of thyroid hormone, but still suffer from severe symptoms of hypothyroidism, because your tissues are starving for it.
From what I understand, some LLMDs prefer to disregard these issues, saying that once the Lyme is properly treated, all will go back to normal. I hope they are correct,and that damage incurred during the sometimes very prolonged treatment time is not permanent.
For people like me, who cannot take antibiotics, it is a constant battle to prevent end organ damage. For example, organs can atrophy (dry up and die) if they do not get enough of the hormones that sustain them. My pancreas is 95% atrophied, and my stomach is about 50% atrophied. I will be put under anesthesia and have an Endoscope inserted into my stomach and bowel to take samples in March, as I do every two years, to check the level of continuing damage and biopsy a precancerous growth there.
Alternative practitioners cannot write prescriptions, and many are also ignorant of the fact that low adrenal function that is not primary, but is secondary to brain function problems, MUST be treated with the actual hormone that is missing.
You can stuff yourself with adrenal boosting supplements until the cows come home, and your adrenals will not recover, if you have secondary adrenal insufficiency. I found this out the hard way.
The FFC (Fibromyalgia and Fatigue Clinics), which are located in 6 cities now, have a program for dealing with all of this, but they are very expensive and not covered by insurance, so for most of us, treating the HPA axis problem is a hit and miss deal, unless you are lucky enough to have an LLMD who is also well-versed in nutrition and natural hormones.
There are lifestyle things you can do to help yourself. Some web sites you may want to check out are www.drrind.com for thyroid and adrenal evaluation, www.endfatigue.org for all of these issues, and www.chronicfatigue.org for adrenal issues.
Try www.stopthethyroidmaddness.com and also Google Mary Shomon for thyroid help. The advice at www.gallbladderattack.com may help you save your gallbaladder....80% of Lymies lose this gland. I am sure there are more sites I am forgetting and hopefully others will recommend them.
klutzo
P.S. To everyone: I was taught that 50 is the absolute minimum vitamin D level, but that it needs to be 65 to be optimal for a healthy person, and 80 to prevent cancer.
My vitamin D level dropped all the way to 33 because I stopped going out in the sun, after 8 bee, wasp and fire ant reactions. 3 of them were anaphylactic reactions, and all 8 happened in only 3 years. I am too afraid to be outdoors much now! I am now on 4,000 units daily to try and fix it.
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Abxnomore
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Some LLMD's are actually alternative M.D.'s.
In rare cases will thyroid and adrenal dysfunction reverse itself after you have been able to rid yourself of lyme. In fact, it needs to be addressed in order to support your immune system and general well being. It needs to be addressed while you are being treated for lyme.
You are correct that a person can be thyroid deficient and it will not show up on their blood work. This is very common. It happened to me.
That is where alternative, holistic, integrative M.D.'s, whatever you want to call them come it.
It is not true that alternative doctors cannot write prescriptions. Alternative M.D.'s can. A Naturopathic Physician, N.D. cannot write them in most states but in a few states they can. I have always used an alternative LLMD and at other times have always seen an alternative M.D. These are the doctors that
fully understand adrenal problems, thyroid issues, intestinal parasites, candida, hormone balance and a whole host of issues that conventional doctors are in the dark about, including heavy metal toxicity.
You are also right that the ranges for vitamin D are being pushed beyond 50 depending who your health care provider is. Alternative doctors like to see it higher that 50 and closer to 65.
Since lots of new research is coming out on Vitamin D, the requirements are rapidly changing and it depends who mainstream your doctor is.
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klutzo
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Hi Abxnomore, I agree with you that alternative DOCTORS can write prescriptions. I said alternative practitioners could not write them, at least not in my state. I should have been more clear in my wording.
Here, most who practice alternative medicine are chiropractors or "certified natural health professionals", which usually means a correspondence course, and they can't write scripts in this state.
The practice of Naturopathy is a felony here and it is enforced. I know of two who went to prison a few yrs. ago.
Integrative doctors are also as rare as hens teeth here, despite this being a major metropolitan area. We have one here who took a weekend course in alt. med. and knows far less than I do, one who is pretty good but comes to this county only one day per week, but refuses to write adrenal scripts, and one who is good, but stopped taking new patients six years ago.
As for LLMD's, we had 5 when I was diagnosed 6 yrs. ago, and we now have zero that I am aware of. There are two in a city an hour away. One of them takes no ins. and charges $9 per minute. The other is good with ABX, but does not deal with the nutritional and hormonal issues.
I am glad you are able to find them where you are. I sure wish there were more Integrative docs of all types in all specialties!
Regards,
klutzo
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Abxnomore
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I should have looked to see what state you live in.
Sometimes I forget that being in NY avails us to much more. There are lots of alternative M.D.s here.
Not all know about Lyme but they can help with all the other issues. But we do have a very good alternative LLMD a ways outside of NYC and much
more help with lyme than you do. Still hard to access for many but definitely more choices.
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Leelee
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I just got more blood work back today and now my Vitamin D level has dropped from 28.1 to 15.1 in seven months' time.
Can anyone shed some light as to why this is happening? I googled "low Vit. D" and a few websites pointed toward a parathyroid problem.
Klutzo, I appreciate the information you provided, but I confess I don't understand all of it.
I haven't gotten my official Lyme diagnosis yet, but my first LLMD appt. is March 17.
I can't help but wonder is there is a correlation between these excessively low numbers and all the other crazy, weird things happening to my body and mind.
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klutzo
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Hi LeeLee,
Here is my two cents, once again with the disclaimer that I am not a doctor, just a student of Naturopathy.
For most Americans these days, low vitamin D is simply the result of listening to well-meaning, but ignorant dermatologists, and slathering yourself with sunscreen, and/or never going outside in the sunshine.
Humans evolved in the sunlight. Some doctors suggest that sunscreen causes ten serious internal cancers for every easily removed skin cancer it prevents, due to the lowered vitamin D levels it causes. Also, the chemicals in it are absorbed into the skin, which is not healthy.
We need some sun, but NOT to the point of burning. Never let yourself burn, and don't wash for at least an hour after being in the sun. This gives your body time to absorb the vitamin D that the sun has made on your skin.
Fair skinned people need to work up to 20 minutes of daily exposure at least five days per week on at least the face and forearms. Darker people need much longer.
If your blood calcium is too high, by all means ask your doctor to check your parathyroids. Parathyroid problems usually cause elevated calcium, and the calcium level is part of most standard blood testing.
Parathyroids are easy enough to check with a blood test. There are 4 of them, and the only problem I know of that can occur with them is a benign tumor of one of them, which is easily removed. This is not common, however.
If you can tell me what part of my previous info you did not understand, I can try to remember to check back with this post and explain it better if you want to know more. Lyme has really done a number on my memory, but hopefully I will remember to check back here.
Meanwhile, IMO, you definitely need vitamin D supplementation ASAP, and probabaly at very high doses, like 50,000 units, just at first to get you a big boost, since your current level is much too low. This should be done under a doctor's supervision with blood testing at regular intervals.
Best wishes, klutzo
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Bugg
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You can feel HORRIBLE solely from Vitamin D deficiency as others on this thread have discussed...you can have muscle cramping, fatigue, shooting pains, bone pain...some report lower back pain and shooting pains down the legs...For many, it can take 3 months to feel better on Vitamin D supplementation...others feel better much sooner....
As for the parathyroid gland, you can have high calcium or low calcium levels depending upon the ideology....see below:
Control of Parathyroid Hormone Secretion
Parathyroid hormone is released in response to low extracellular concentrations of free calcium. Changes in blood phosphate concentration can be associated with changes in parathyroid hormone secretion, but this appears to be an indirect effect and phosphate per se is not a significant regulator of this hormone.
When calcium concentrations fall below the normal range, there is a steep increase in secretion of parathyroid hormone. Low levels of the hormone are secreted even when blood calcium levels are high.
The parathyroid cell monitors extracellular free calcium concentration via an integral membrane protein that functions as a calcium-sensing receptor.
Disease States Both increased and decreased secretion of parathyroid hormone are recognized as causes of serious disease in man and animals.
Excessive secretion of parathyroid hormone is seen in two forms:
Primary hyperparathyroidism is the result of parathyroid gland disease, most commonly due to a parathyroid tumor (adenoma) which secretes the hormone without proper regulation. Common manifestations of this disorder are chronic elevations of blood calcium concentration (hypercalcemia), kidney stones and decalcification of bone.
Secondary hyperparathyroidism is the situation where disease outside of the parathyroid gland leads to excessive secretion of parathyroid hormone. A common cause of this disorder is kidney disease - if the kidneys are unable to reabsorb calcium, blood calcium levels will fall, stimulating continual secretion of parathyroid hormone to maintain normal calcium levels in blood. Secondary hyperparathyroidism can also result from inadequate nutrition - for example, diets that are deficient in calcium or vitamin D, or which contain excessive phosphorus (e.g. all meat diets for carnivores). A prominent effect of secondary hyperparathyroidism is decalcification of bone, leading to pathologic fractures or "rubber bones".
There is no doubt that chronic secretion or continuous infusion of parathyroid hormone leads to decalcification of bone and loss of bone mass. However, in certain situations, treatment with parathyroid hormone can actually stimulate an increase in bone mass and bone strength. This seemingly paradoxical effect occurs when the hormone is administered in pulses (e.g. by once daily injection), and such treatment appears to be an effective therapy for diseases such as osteoporosis.
Inadequate production of parathyroid hormone - hypoparathyroidism - typically results in decreased concentrations of calcium and increased concentrations of phosphorus in blood. Common causes of this disorder include surgical removal of the parathyroid glands and disease processes that lead to destruction of parathyroid glands. The resulting hypocalcemia often leads to tetany and convulsions, and can be acutely life-threatening. Treatment focuses on restoring normal blood calcium concentrations by calcium infusions, oral calcium supplements and vitamin D therapy.
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klutzo
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Thank you Bugg! I did not know about the parathyroid connection to low calcium. I learned something new today, thanks!
klutzo
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Leelee
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Hi Klutzo and Bugg,
Thanks for your in-depth explanations. I appreciate your insight and your willingness to share this information.
I went back to my PCP today and she gave me a prescription for Vitamin D supplements. I can't remember what they are called as she sent the request directly to the pharmacy and I haven't picked it up yet.
My calcium level seems fine at 9.2 so if I'm understanding things correctly there is no need to worry about a parathyroid problem.
I go to my first LLMD appointment March 17. I assume Lyme is the basis of my problems, but I could be wrong. Maybe I just don't have enough Vitamin D.
If you don't mind, I'd like to ask your opinions on starting the Vitamin D supplements immediately. Or should I wait until I have seen the LLMD first?
I am torn. I want to start feeling better right away and if Vitamin D will help, then, great. But at the same time I don't want to do anything that will compromise my diagnosis for Lyme.
Your advice and thoughts would be most appreciated!
Leelee
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klutzo
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Leelee, I am no expert on LLMD's, since I've never had one, so my opinion may not be worth much on this subject.
I would think there would be no conflict with your taking the vitamin D in most cases, and I personally would not wait, especially if you have a long wait for your appt.
I would only wait if I had chosen an LLMD who was one of the following two types that I've read about here:
1. One who wants you to take no supplements at all, which I strongly disagree with.
2.One who favors the Marshall Protocol, which I also strongly disagree with.
Those are just my very biased two cents, since I don't believe that killing 85% of the bugs with ABX is enough. The other 15% are going to mutate and be even stronger, from what I understand.
So, the body must also be made inhospitible to the bugs, and immunity must be made strong enough to render the infection dormant and keep it that way. I don't believe that can be done without targeted supplementation.
If you are seeing the LLMD very soon, you may want to wait and see what he/she says. A few more days won't matter all that much.
klutzo
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Just a thought, but I think chronic illness of some kinds up-regulate the enzyme that that converts 25 OH-D into 1,25 di OH D (which is 10 times more potent than 25 OH D). The aforementioned enzyme is produced by the kidney, macrophages, and even the placenta. In any event, when this enzyme is up regulated it will be very difficult to raise 25 OH D levels because the molecule will be converted as soon as it enters the system. People with this problem might benefit from MP. Most people are simply 25 OH D deficient though, and light supplementation with gradual upward titration would be the way to go. MP on such a person could be disastrous.
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Leelee
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Hi klutzo,
I am going to go ahead and pick up my prescription for the vitamin D supplements today, then. I appreciate your thoughts.
From what I gather, my soon-to-be LLMD believes strongly in supplements and does not follow the Marshall protocol.
I have so little Vitamin D in my body now that I'm concerned about broken bones, etc.
Thanks again, Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Leelee
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DoctorLuddite,
Thanks for your response.
If you don't mind, could you tell me what "MP" is?
Also, does "gradual upward titration" mean gradually increasing exposure to sunlight? If so, how much sunlight should a person like me get? I am 52, female and fair-skinned.
I walk my dogs three to five miles nearly every day, except when it's too cold or my bones hurt too much.
Please excuse my ignorance. I'm not at all as well-versed in medical terms as I should be.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Bugg
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Klutzo and Doctorluddite--Those are great explanations....
Leelee--MP stands for the Marshall Protocol which was designed by Dr. Trevor Marshall. You can find some info about this in the archives on this site. In essence his theory is that lyme disease is similar to another disease, sarcoidosis, in which the active form of Vitamin D..1, 25(OH)D is upregulated. In many of these people with sarcoidosis you will find elevated calcium levels. Dr. Marshall believes that you should not supplement with Vitamin D as this will feed the upregulation and exacerbate the hypercalcemia....He has a protocol that you can follow involving Benicar and avoidance of vitamin D....You can "google" the Marshall Protocol and find a lot of info on it...
In many lyme patients, especially in the earlier stages of their disease, they will have the upregulated 1, 25 (OH)D levels and so many believe you shouldn't supplement with Vitamin D. However, many lyme patients do not have the accompanying hypercalcemia which begs the question whether you should deprive your body of the Vitamin D.
As Doctorluddite so aptly described, there are a number of causes for upregulation of 1, 25(OH)D including macrophage activity. I think, although I might be wrong, that it is not in dispute that upregulation of 1, 25 (OH)D catabolizes(depletes) 25 (OH)D as the 1, 25(OH)D uses the 25(OH)D to feed its high stores. This can result in vitamin D depletion (25(OH)D. Some lyme patients feel that it's important to restore this depletion through Vit D supplementation.
As for taking Vitamin D, it may take you MONTHS before you feel the positive effects in your body....Many lyme patients give up on Vitamin D supplementation because they don't feel the positive impact (mitigation of bone aches/muscle aches) soon enough and imagine they've gone down the wrong path with Vit D supplemenation....they may think a coinfection is the cause of their symptoms, for ex.....
Depending upon your levels, it can really take quite some time to get the D in the upper range....If you subsribe to the theory that Vit D helps, many LLMDs recommend getting it around at least 50....
It sounds like your doc has prescribed Vitamin D2....
Take Care....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg
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posted
DoctorLuddite or anyone else with a theory/guess:
Do you have a theory/explanation as to why many lyme patients fall in the mid-20s/low-30s ranges on their Vitamin D tests? Some of those people have written me and don't understand why they would suffer from symptoms of Vit D deficiency as their levels aren't critically low..ie 17 and below....
I wonder, in this instance, if lyme patients' inflammatory cells producing the 1, 25(OH)2D deplete the 25 (OH)D levels just enough to feed the 1, 25(OH)2D levels and not enough of the active hormone is left to effectively fight the autoimmune aspect....In other words, lyme patients 25(OH)D levels HAVE TO BE HIGHER than a normal persons because a normal person isn't using the active form to fight autoimmunity....You would think, though, that if lyme patients had this cycle going on that all of their levels would be quite low....I don't knw what is keeping them in the mid-20s/30s range....What's keeping the serum levels as high as they are???
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg
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posted
For what it's worth, I just read where Dr. Hollick, one of the leading experts in Vitamin D deficiency, said that many experience side effects when starting Vitamin D supplementation. He said that the bone pain/muscle pain many feel is attributed to absorption of calcium where the person has been deficient.....
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Holick is the Vitamin D guru, though I have seen some studies of his I disagree with. People who dye their hair regularly tend to have suspiciously normal 25 OH D levels, I think the tests are spectrographic, ie:based on absorption of light through a prepared sample, perhaps people who dye absorb enough of the soluble dye into their serum so that the test becomes innaccurate.
There is a lot of controversy as to what appropriate D levels are, in general though, Growth Hormone peaks in the early 20s and declines thereafter in a steady way; that decline can be tempered by raising the vitamin D level.
I came up with a formula: after age 40, the oh d should be 40 plus 1/2 x age. 30 to forty, keep it around 45, below 30 keep it around 40. It drops pretty quickly if there are a few days of rain, so that's when someone should boost intake.
Think of it as sunshine in pill form, if you are missing the sun, take a D.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Leelee
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posted
Hope this isn't too off-topic for this discussion.
As I mentioned earlier in this thread my Vitamin D level is 15.1. That was a typo. It's really 17.1.
My PCP gave me a prescription for 50,000 IU of Vitamin D to take twice a week for two months to raise my level up.
Does this sound like the right amount? I'm 52, female although in the winter I get out a bit less.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
The 50,000 IU dose is D2, not as effective in people as D3, it is ok to take it once a week, but you should also take D3 daily, otherwise your D2 will rise, but D3 will decline.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Leelee
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Thank you DoctorLuddite.
Do I need an prescription for D3 or is it over-the-counter?
Can you suggest a brand to purchase and what dosage?
Many thanks,
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
D3 is over the counter, quality brands are carried by many health food stores and even supermarket chains. In general though, in its natural form it is an oil, so a soft gel is the preferred type, there are some that come as dry pills, but that means it has been chemically treated to crystalize, and who knows what that will do to it's bioavailability or effectiveness. Solgar makes one concentrated from cod liver oil, but that has varying amounts of vitamin A, Carlsons makes a good prep of D3 derived from lanolin, or wool oil.Bluebonnet makes a gelcap too, google all of those, you'll find links everywhere.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Leelee
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posted
Many, many thanks DoctorLuddite!
I was hoping to hear your thoughts before I went to the pharmacy, as I value your comments.
Tomorrow I will get the D3 as you suggested.
I very much appreciate your advice.
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Start low and go slow, that is: 400 IU per day for a few days, titrate up slowly. Let your symptoms be your guide, If you feel better, stick with that dose, if you are having worse symptoms reduce or stop. I am hoping that the medical establishment stops using D2. The absolute best method of raising D3 is sunshine...
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Shosty
Unregistered
posted
My level came back as 14! I have allergies to a lot of the supplements, including to lanolin, soy, tropical oils, salmon, dairy, gluten, etc.
The only thing I have found is some tablets that I can take. Anyone know of gels made of something other than lanolin, without soy?
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Leelee
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Shosty,
Your level is even a little lower than mine.
About four posts above, DoctorLuddite gave me some suggestions. She indicated that Solgar makes a Vitamin D supplement from cold liver oil that also includes some Vitamin A. You might want to take a look at her response.
Wishing you luck in finding what you need.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Docluddite is a he.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Leelee
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posted
Oh dear! So very sorry!
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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