joint pain - offer any ideas?

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joint pain - offer any ideas?

Postby ljm » Sun May 21, 2006 1:41 pm

I promise. Someday I will stop asking just questions about MY OWN problems and actually contribute productively to these forums. But I am still awaiting an appointment with the UCSF MS clinic and I'm just hanging out feeling worried.

The scenario: I've been on ABX, during the last Flagyl pulse I had "yelping" pains in some joints (wrists, knees, neck) which stopped as suddenly as they came. Now they've come back, without Flagyl, at a lower "involuntary grimmace" pain level and seem to be staying around.

The question: is this likely to be (a) a new MS symptom (b) toxicity due to vitamin d at 4000IU a day (c) a herx response that is lasting too long (d) a rapid onset of RA or something wierd aka my mother (e) just another stress/anxiety pseudo excerbation, get over it.

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Postby jimmylegs » Sun May 21, 2006 3:12 pm

hi i don't know exactly what would be causing the pains, but i know a little bit about vitamin d, and i sincerely doubt that you need to worry about having too much.

Hypervitaminosis D
From Wikipedia, the free encyclopedia

In terms of the likelihood of poisoning, Vitamin D seems to be one of the least poisonous substances known. Overdose occurs at more than 100 times the daily RDA (more or less a bottle of vitamin D tablets per day), for several months. Acute one-time overdose requires over 50mg (ten thousand times the RDA). Foods contain low levels, and have not been known to cause overdose.

Although taking excessive amounts of cod liver oil over months or years could produce an overdose in theory, it is almost always associated with forms of vitamin D that require a doctor's prescription. Overdose has also occurred due to industrial accidents, for example when incorrectly formulated pills were sold or missing industrial concentrate cans misused as cans of milk.

Symptoms of vitamin D poisoning include:

Decreased appetite (anorexia)
An excess of vitamin D causes abnormally high blood concentrations of calcium which can eventually cause severe damage to the bones, soft tissues, and kidneys. It can also damage the kidney and produce kidney stones.
(end of wikipedia excerpt)

have you had your serum 25-hydroxyvitamin d tested? i had been supplementing at close to 4000 IU of D3 per day for over three months and only got up to 72 nmol/l so far - that is not even good enough for bone health let alone immune health, supposed to be in the 125-150 range apparently, but i think that is a fairly arbitrary target from what i've read. right now i'm making arrangments to take 50,000IU per day for 10 days, which should kick it up to the 150 zone, i'll get a serum test again, and then i'll drop back to a lesser daily intake for maintenance.

my dietitian gave me a great table the other day, showing a review of studies of daily D intake compared to serum values. a 1987 study says that 50,000 IU taken daily for 6 weeks resulted in serum levels of 320 nmol/l, and that serum level isn't even dangerous, so i'm sure 10 days will be fine in my case. i talked with the pharmacist and he's ordering some awesome 1,000,000 IU/g liquid cholecalciferol that you take with an oral syringe.

here is a link to a GREAT article on D supplementation. i think it may be my favourite vitamin D article yet. it should reassure you that you are probably not hypercalcemic from vitaminosis d. it references a study that says even serum levels as high as 250 nmol/l had no toxic effect. i found a 1999 study (link at the very end) that did tests on various groups including half-naked outdoor labourers in india, and their serum levels were around 450 nmol/l, and you know your own body wouldn't make too much. so anyway, having your bloodwork done and knowing where you're at makes tons of sense to me. also if you find your levels are low even though you've been taking your D3 for a long time, you might want to investigate your liver and kidney function and try to decide if you need to get pre-hydroxylated D3.

the numbers stuff in the Hollis article is fun. i back-calculated where my serum D must have started in order for me to only be at 72 after three months, and it was ridiculous.

(aside: can someone check my math? per the article, my 3400IU/d divided by 40 IU multiplied by 0.7 = 59.5, which is what i think would be my serum increase at my usual supplementation rate over 5 months, and i'm three months in. i'm not sure if the stability after 90 days thing means i've already gone up the full 59.5 nmol/l now, or if i should calculate my original number by saying 72 is 3/5 of the way along my 59.5 serum D value increase. did i start at around 12? or around 35? either way, YIIIKES!!!)

anyway here are the article links:

Symposium: Vitamin D Insufficiency: A Significant Risk Factor in Chronic Diseases and Potential Disease-Specific Biomarkers of Vitamin D Sufficiency
Circulating 25-Hydroxyvitamin D Levels Indicative of Vitamin D Sufficiency: Implications for Establishing a New Effective Dietary Intake Recommendation for Vitamin D1
Bruce W. Hollis2

Departments of Pediatrics, Biochemistry, and Molecular Biology, Medical University of South Carolina, Charleston, SC 29425

Elevated serum levels of 25-hydroxyvitamin D3 in outdoor workers
of South India
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Postby SarahLonglands » Mon May 22, 2006 4:29 am

Lizz, you should have asked this in the Antibiotics forum, I nearly missed it, but was commenting upon just the same thing to someone else at half past seven this morning, would you believe on CPn Help.

This is what I said:

"L, everyone is going to be different, but with me, I felt very little for the first pulse, even taking it for the full five days, apart from the extra fatigue and depression which most people get and a certain feeling of disconnectedness. I also remember a certain sharp and gripping pain when getting out of a car and slamming the door behind me with my previously useless hand, just to prove I could do it. All these continued with each subsequent pulse, the fatigue and depression being there to some extent even today and even on tinidazole, although less with that. The pain in my arm really came on full force during pulse five or six. It was the awful, bone crushing, thalamic pain of reflex sympathetic dystrophy, which came on, reached its worse after about ten minutes in one place then seemed to subside only to reappear somewhere else in my arm or shoulder a few minutes later. I only got it the once like this and it lasted about ten days , so carried on after the pulse. I was left rather sore for a couple of weeks after that, but never got it again. the arm remained a bit weakened for a few weeks. I don't think I am at all typical in this, it is just the nature of my pattern of illness when I began. After that, nothing really apart from the symptoms first mentioned and these would clear up about a day or two after finishing a pulse."

Does it sound at all like that? It can be quite excruciating while it lasts. That one pulse was the worst but I did have it come back once or twice at a much lesser extent.

An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby ljm » Sat May 27, 2006 9:51 pm

Sorry for taking so long, but my thanks jimmylegs and anecdote. Like others I'm finding JL's information on VitD really useful, I'm going to see if I can have the bloodwork done,. From anecdote, I guess the pain is the same in that its pretty painful, but its in my joints, and it hasn't abated. I guess its rather useless to worry about, as there isn't much that can be done in any event, but its the first time that I've felt people looking at me oddly, the way I'm moving.
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joint pain thoughts

Postby jimmylegs » Sun May 28, 2006 5:53 am

hi there, just a thought, whenever my mother has joint pain she goes off sugar and white flour for a while until it goes away. is this a feasible thing for u to consider? (meaning, do u eat white flour and sugar?)

also i recently did a bit of reading on glyconutrients which have immunomodulatory effects possibly beneficial to ms sufferers (boost natural killer cells, which are known to be low in ms ppl just before relapse), and it turns out glucosamine is one of those helpful glyconutrients. (common sense i know, but i never investigated what glucosamine was before! these medical words make sense to me now in a way i could wish they did not!) i do not know if glucosamine by itself boosts natural killer cells. the study i read (which is about CFS - but an immune system is an immune system!) mentions a multi containing 8 monosaccharides. the glucosamine one is N-acetylglucosamine (i researched that outside the context of the article - did not read the full text).

Integr Physiol Behav Sci. 1998 Jul-Sep;33(3):280-7.
The in vitro immunomodulatory effects of glyconutrients on peripheral blood mononuclear cells of patients with chronic fatigue syndrome.
See DM, Cimoch P, Chou S, Chang J, Tilles J.
University of California, Irvine, Department of Medicine, Orange 92668, USA.

In humans, eight monosaccharides are required for the synthesis of glycoproteins. Dietary supplements that supply these crucial sugars are known as glyconutrients. A glyconutrient compound was added to Peripheral Blood Mononuclear Cells (PBMC) isolated from normal controls and patients with the Chronic Fatigue Syndrome (CFS), a disease associated with immune dysregulation. The in vitro immunomodulatory effects were investigated. Cell surface expression of the glycoproteins CD5, CD8, and CD11a were significantly lower in patients with CFS compared to normal controls. Addition of glyconutrient homogenate to PBMC from patients with CFS stimulated with phytohemagglutinin significantly increased the expression of each glycoprotein. Furthermore, natural killer (NK) cell function was reduced in CFS patients. The glyconutrient preparation significantly enhanced NK cell activity versus human herpes virus 6 (HHV-6)-infected H9 cells in an 8 h 51Cr release assay compared to placebo for PBMC from patients with CFS (p< .01). Finally, apoptosis was significantly higher in patients with CFS. The percentage of apoptotic cells was significantly decreased in PBMC from patients with CFS that had been incubated for 48 h with glyconutrients. Thus, glyconutrients improved abnormal immune parameters in vitro in patients with CFS.
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