Guest Julia59 Posted December 9, 2005 Report Share Posted December 9, 2005 I think I already told you guys that it was found that my vitamin D levels were extremely low.----less then 7----it should be from 25-55................ Anyway, I was doing a little research and found this interesting article......http://www.bioticsresearch.com/PDF/Vitamin...calciferol'I know that by taking the vitamin D---which is a written prescription by my Doctor, and also adding calcium---(caltrate---with vitamin D and minerals) that it may not cure everything that is going on with my health----but it may help with a little of it. Since the Caltrate has vitamin D in it already---i'll have to lower the prescription dose a bit.My PCP thought it might help with some of my POTS symptoms.Julie :0) Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 9, 2005 Report Share Posted December 9, 2005 Do they think that the low vitamin D has anything to do with your bone problems?nina Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted December 9, 2005 Report Share Posted December 9, 2005 I have no idea----I did have a bone density test a couple years ago----never heard the results---so I assume it's normal. Still waiting for the bone scan to be done as it was delayed once by me----- then delayed by them again. Then we thought it was set----but I had a very bad spell and couldn't do it. I have until Jan 23rd to do it. I'm a mess these days----and my upper body----well I guess lower body also----just feels very unstable---and Pain, pain. pain.........I imagine the EDS doesn't help the situation. Last week---I think Friday I cupped my hands behind my neck----like many people do before they stretch. Something popped or moved that wasn't supposed to move in my neck----right around the C7---T1 level. It felt like a razor blade was cutting into my spine. It passed for a while, but that area continues to hurt a lot more then usual.My legs are weaker, and the numbness in both legs is about the same ----maybe a little worse. I was not able to make it at the mall---legs got weak, then buckled, then started getting all twisted up. After losing my balance several times---and not being able to coordinate my legs---my husband helped me walk out of there. This was Sunday. This week I haven't noticed anything other then the bad coordination/balance and of course the weakness/numbness.This is a big fat joke. My X-ray of the neck was OK according to the radiologist which would seem impossible as I have so much abnormal movement up there, but I don't know what the neuro thinks yet---and I am still waiting for the results of the thoracic spine MRI. I don't know why that was ordered as I have about three MRI's of that already. That part of my back just feels like it's going to cave in.I nearly collapsed today when I attempted to take my mother to a couple stores. I'm sick of this.Julie :0) Quote Link to comment Share on other sites More sharing options...
Sunfish Posted December 9, 2005 Report Share Posted December 9, 2005 julie-i haven't been able to read it all yet but thanks for the article...it looks interesting. my Vit D isn't as low as yours but is low-normal and some of my other blood levels have been low as of late so we're thinking it may have a GI causation on my end of things....hang in there, melissa Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 9, 2005 Report Share Posted December 9, 2005 Julie, I don't think it's that strange that your films would be normal. Films are taken whilst you are in a static state (no movement)--they can't account for functional difficulties that only occur with movement. That's what an fMRI is about.Nina Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted December 9, 2005 Report Share Posted December 9, 2005 Nina---I did a flexation/extension for the x-ray. The radiologists at MUO aren't very good---i'll have to wait and see what the Cleveland Clinic has to say. All I know is that I will continue to push the issue on the instability as I can literally feel it. It's terrible-----and I have to be so careful on how I move.I need to settle down for a while and just take care of my Ron and I. I've been helping my parents because my Dad hd lithotripsy to bust up some kidney stones. He was pretty grey there for a while---so I helped around the house the best I could---EH---maybe it took the edge of things for him----who knows. He's doing good now----Anyway the more I move the worse all the pain gets---------I'm sure you know that drill--------- This stuff is so hard to explain.............................Oh Melissa-----I sometimes wonder about the GI issues---I need to look into some of this----more testing I don't want to think about.Julie :0) Quote Link to comment Share on other sites More sharing options...
morgan617 Posted December 11, 2005 Report Share Posted December 11, 2005 My D level is 8. I have severe osteopenia. .5 away from osteoporosis, they have no idea why. Tried Boniva and got hives.I wanted an x ray for my thoracic and they wouldn't even do one. Say they are too worried about the lumbar, but it's not the lumbar that's killing me off. So understand the frustration, but jealous because at least you got an x ray. Who knows with our bodies. morgan Quote Link to comment Share on other sites More sharing options...
Guest Finrussak Posted December 11, 2005 Report Share Posted December 11, 2005 (edited) FYI re: Vit D...recent and interesting studies relating it to MS and sarcoid stuff as well as tickbornes...a Trevor Marshall, research scientist, has developed a protocol ( Marshall Protocol) using of all things an ARB called Benicar that BLOCKS Vit D pathways to effectively reduce the Th1 inflammatory processes and/ or enable the body to fight what he terms "pleomorphic" bacteria...very tiny virus sized bacteria so far unclassified, that may be at root of many chronic illnesses. For those who use google a far better search engine is the one the university researchers use: www.scholar.google.comBe aware that what comes up are actual journal articles and abstracts written for non-average audiences...keep a scientific dictionary handy!!!So, your low Vit D MAY be your body's way of fighting off something OR a happy coincidence that is protective in some way?!? Id want to try to figure out why low levels...are you using it up like many of us do with potassium?, blocking one of the many pathways of formation? faster breakdown pathway due to more enzyme?? Not enough intake?? Whenenver I come up short of some thing or other I first try to figure out if its a good thing before replacing it!!! i.e. my son was perpetually low in B12 and we kept boosting with injection and sublingual and he felt AWFUL. So while on MTBI drugs we now leave it low and he gets thru his Herx's better...the theory is that for him, a lower B12 may starve the bacteria and help him in some way remove toxins better....we just know to let him be a little low on it. After he gets into remission (Oh Lord let that be soon) we will then regroup about his levels. Edited December 11, 2005 by Finrussak Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted December 12, 2005 Report Share Posted December 12, 2005 I have no idea why my levels are so low. I know at one time heavy lead showed up in my urine---36---almost four times the normal amount.................... At this point it would now be in my bones if I had true lead poisoning. Maybe with lead being in my bone I would show to be low in vitamin D.Frankly---i'm so tired of going to Docs---it is sooooooooooo taxing on my system. My health has taken a sudden change for the worse---fighting hyper adrengic attacks---------more tachy then usual----when this happens I know my body is in a midst of a crash. I just need to lay low for a while. I have vitamin suppliments----i'm suposed to take high doses and take calcium with it---but I have a feeling I need more testing---more blood work.I do have a prescription for blood work on a PTH level----whatever that means.........................I feel like you know what................I hope it just a virus or something....Julie :0)Never mind-----this is what PTH blood tests are for. here's the link below-------->http://www.labtestsonline.org/understandin...pth/sample.htmlJulie :0) Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted December 12, 2005 Report Share Posted December 12, 2005 Never mind-----this is what PTH blood tests are for. here's the link below-------->http://www.labtestsonline.org/understandin...pth/sample.htmlJulie :0) Quote Link to comment Share on other sites More sharing options...
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