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thelymelight
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| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
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Posted: Fri Oct 31st, 2008 23:53 |
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Hello Dr. Marshall,
I just had my follow-up appt on Monday with my Endocrinologist, who is a "Bone Specialist", affiliated with a respectable University here in Ontario.
I have Osteopenia, with my T-scores for the hip being
-2, -2.4, then - 2.2 , (which were done every 18-24 months)..She says I have a "low peak bone mass"....and obviously she was quite concerned that my 25-D levels are even lower now, then they were when I saw here in 2006.
She said if I don't increase my Vitamin D intake, I could end up with "Osteomalacia" in a few yrs time...(which I think she said means "soft bones")....It is very confusing for the patient, when you have a Dr. who specializes in bone density etc, saying one thing about the importance of Vitamin D and the MP Study Site, saying something completely different...I feel it is important for one to keep an open mind and respect both sides of the research...
I did try to explain the problems patients with Th1 diseases have with respect to the dysregulation of the D's, but don't know if it all came out correctly, because what I was saying didn't seem to jibe with her.....When ever I told her something about your research, she said it was incorrect or false...so I didn't get very far....
I believe it is very important for her to be aware and understand your research and think it would be best to just give her one or two of your scientific papers, that explains the Vitamin D-dysregulation etc, in people with Th1 diseases...1) Which two papers would you recommend?
If I have my facts correct, I believe your research is showing that Vitamin D intake and 25-D are not responsible for helping to build strong bones/density 2) Does that just pertain to people with Th1 diseaes or does that include everyone in the general population?
3) If the 25-D does not buid strong bones etc, is it the active metabolite 1-25 D, that is responsible for doing that?...
4) Are there any other differences or discrepencies in what your research has discovered & what other researchers are saying, about the need for Vitamin D intake for strong bones?
Would greatly appreciate your input, Thank-you!!
~ Lisa  Last edited on Fri Oct 31st, 2008 23:55 by thelymelight
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, Rivotril 1/2 of a 0.5 mg for sleep; iodine spray for thyroid, weaned Hydrocortisone
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Nov 1st, 2008 00:50 |
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Dear Lisa,
Your Endo is dead wrong in her understanding of the effect of Vitamin D on bone. There are now over 1000 people who have gone through the MP in our cohort, and their bone density typically gets better over time if they are taking the RDA of calcium. Usually their bones measure normal after a few years on the MP. Indeed, the more years they have low 25-D levels the stronger their skeleton becomes...
You are going to have trouble trying to explain that to your physician, however. You might take her a copy of my Bioessay, and my transcript from the Porto Conference. But I doubt it will make much difference.
If she is like the average "bone specialist" I bet she has seen so many of her patients lose their bone strength and mass. Even though she treats them the way she believes is best. You would think that the Endos would add two and two together, but they usually can't
Vitamin D has esentially no role in bone strength. Lack of phosphorous and calcium in the diet are primary determinants, as is the inflammation that all of us experience as we grow older. This is because that inflammation affects ParaThyroid Hormone, PTH, which in conjunction with the Calcium Sensing Receptor, CaSR determines the level of calcium in the bloodstream. The Estrogen receptor is the major determinant of bone matrix strength.
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thelymelight
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Posted: Sat Nov 1st, 2008 03:50 |
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Hi Dr. Marshall
Thank-you for responding and so quickly.....I actually mentioned to her that patients have had their bone density scores improve while & after being on the protocol....Her response was: " improvement in T-scores doesn't necessarily mean increased bone strength"...She said there are a number of reasons that a bone density score can get better...go figure hey!!...you're probably right, no matter what I say, she's not interested in hearing it..
She asked what your qualifications were and I said I don't know off the top of my head, I would have to get them for her..When she found out you were not an M.D. she thought that was a drawback and said, if he is doing a clinical study, he should be affiliated with a University and it should be funded by them...I guess these are her parameters for following research on Vitamin D...pretty limiting and narrow minded  ....I guess she thinks only MD's are qualified to do research and make discoveries.
Anyways, I will check out those two papers you mentioned, print them out and give them to her when I see her in March.
Won't she be in for a big surprise, when my D levels normalize and my bone density improves after a few years of being on the MP abx. ..maybe then she will be interested in learning something about it.
With regards to supplementation, am I best then to take one with just calcium, phosphorus & boron?
Thanks again for you response.
~Lisa
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, Rivotril 1/2 of a 0.5 mg for sleep; iodine spray for thyroid, weaned Hydrocortisone
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
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Posted: Sat Nov 1st, 2008 09:15 |
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Calcium is what you want to be sure you have enough of. Near the RDA is about right (1000 - 1500 mg). Most people get more phosphorus than they need and it is widespread in the diet and I don't recommend getting a supplement that contains it. It is uncertain whether boron is helpful.
Try to eat a healthy diet and if you can't get near the RDA of calcium in your diet, then I suggest a calcium supplement without vitamin D. I prefer Solgar chelated calcium myself. It is hypoallergenic and I'm sure it has not D.
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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jcwat101
Research Professional
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Posted: Sun Nov 2nd, 2008 01:00 |
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Also, you could read this:
Do I need to take a calcium supplement to prevent osteoporosis...
It is important to not take more than 500 mg calcium at one time. My diet has not always been very good, and so I also take Solgar vitamin K and Solgar chelated magnesium as well, since I do not get enough in my diet and think there is evidence of benefit to bone for these two nutrients.
This article might also help with your doctor. It is at a new SynergyHN website now. The one that used to be at members.aol.com/synergyhn
is now at:
http://SynergyHN.com/lesions
It will be interesting to see what your doctor thinks of the correlation between vitamin D intake and brain lesions shown by MRI that the article talks about, in addition to the MP related material mentioned previously and discussed in the article.
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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P.Bear R.N.
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| Joined: | Fri Dec 3rd, 2004 |
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Posted: Sun Nov 2nd, 2008 03:38 |
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Lisa, More ammunition might be this paper below that explains another possible mechanism for the MP's Benicar helping people with bone density increases. My moms bone density kept dropping on Actonel and vitamin D, only to increase on the MP. Any endocrinologist worth his or her salt would know that elevated levels of 1,25-D cause calcium to be liberated from the skeleton, and that this is the reason that 1,25-D in certain plants kills livestock.
Japanese study: Angiotensin II accelerates osteoporosis by activating osteoclasts, FASEB J. 2008 Feb 6, Shimuzu H,Nakagami H,Osako MK, et all This study used Olmesartan to block Angiotensin II and therefore reducing osteoporosis (in rats).
http://www.fasebj.org/cgi/content/abstract/fj.07-098954v1
Hideo Shimizu, Hironori Nakagami, Mariana Kiomy Osako, Rie Hanayama, Yasuo Kunugiza, Takuji Kizawa, Tetsuya Tomita, Hideki Yoshikawa, Toshio Ogihara, and Ryuichi MoriS***a E-mail contact: moriS***@cgt.med.osaka-u.ac.jp
Recent clinical studies suggest that several antihypertensive drugs, especially angiotensin-converting enzyme inhibitors, reduced bone fractures. To clarify the relationship between hypertension and osteoporosis, we focused on the role of angiotensin II (Ang II) on bone metabolism. In bone marrow-derived mononuclear cells, Ang II (1x10-6 M) significantly increased tartrate-resistant acid phosphatase (TRAP) -positive multinuclear osteoclasts. Of importance, Ang II significantly induced the expression of receptor activator of NF- B ligand (RANKL) in osteoblasts, leading to the activation of osteoclasts, whereas these effects were completely blocked by an Ang II type 1 receptor blockade (olmesartan) and mitogen-activated protein kinase kinase inhibitors. In a rat ovariectomy model of estrogen deficiency, administration of Ang II (200 ng/kg/min) accelerated the increase in TRAP activity, accompanied by a significant decrease in bone density and an increase in urinary deoxypyridinoline. In hypertensive rats, treatment with olmesartan attenuated the ovariectomy-induced decrease in bone density and increase in TRAP activity and urinary deoxypyridinoline. Furthermore, in wild-type mice ovariectomy with five-sixths nephrectomy decreased bone volume by microcomputed tomography, whereas these change was not detect in Ang II type 1a receptor-deficient mice. Overall, Ang II accelerates osteoporosis by activating osteoclasts via RANKL induction. Blockade of Ang II might become a novel therapeutic approach to prevent osteoporosis in hypertensive patients.—Shimizu, H., Nakagami, H., Osako, M. K., Hanayama, R., Kunugiza, Y., Kizawa, T., Tomita, T., Yoshikawa, H., Ogihara, T., MoriS***a, R. Angiotensin II accelerates osteoporosis by activating osteoclasts.
best, P.B.
Last edited on Mon Nov 3rd, 2008 06:46 by P.Bear R.N.
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thelymelight
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Posted: Sun Nov 2nd, 2008 07:12 |
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Thanks Joyce and P.Bear for you input....I will definetly print out these articles and give them to my Endo.
Haven't had a chance to read them myself yet, but they certainly look very informative...
~Lisa 
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, Rivotril 1/2 of a 0.5 mg for sleep; iodine spray for thyroid, weaned Hydrocortisone
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thelymelight
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Posted: Tue Aug 11th, 2009 20:38 |
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I am sending a packet to my Endo who is a 'bone specialist' and runs a bone clinic at McMaster University in Hamilton, Ontario.
I want to include a cover letter in the packet and am trying to write or find 1-2 paragraphs, that will explain in a nutshell what Dr. Marshall has discovered about Th1 diseases and how the low levels of 25-D are caused by an upregulation of the 1-25D caused by the infected cells with CWD bacteria....so it will intrigue her to read the research I am enclosing...
As she presently believes low levels of D, mean I need to take Vit D, especially as I have osteopenia.
Can anyone direct me to an article that summarizes this or is anyone able to help me, by writing a paragraph off the top of their head, that would explain all this....I am having difficulty with brain fatigue etc... putting something together....I am feeling overwhelmed by all the literature on this site..
Thanks!!!
Lisa
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, Rivotril 1/2 of a 0.5 mg for sleep; iodine spray for thyroid, weaned Hydrocortisone
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jcwat101
Research Professional
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Posted: Wed Aug 12th, 2009 03:59 |
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My letter to the Editor on the MP and vitamin D is now online and shouldn't be too hard for a doctor to get through, as it had to be fairly short: http://tinyurl.com/par2ys.
But perhaps this is still too long. If so, maybe there is something in the simple explanations, or you could extract a few sentences or paragraphs from it and give to your doctor.
Or maybe you could give it to him/her and circle the parts you think are most helpful.
Alternatively, there is a link with Simple Explanations that someone can find for you (though perhaps they will sound oversimplified for your doctor).
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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thelymelight
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Posted: Wed Aug 12th, 2009 17:31 |
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| thanks Joyce for this link!
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, Rivotril 1/2 of a 0.5 mg for sleep; iodine spray for thyroid, weaned Hydrocortisone
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Gary
Member in Phase 3
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Posted: Wed Aug 12th, 2009 21:41 |
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Lisa -
It seems from your posts that your bone specialist endo is not the one prescribing the MP drugs for you.
If that is the case you may want to really consider why you want to convince her. What does it get you? If she is monitoring your thyroid supplementation, perhaps just focus your visit on that.
If you really want to get her attention, then I think you have the right idea of going back in 5 yrs or so with healthy bones in a healthy body. Right now, you might have better uses for your energy.
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Sarcoidosis/neuro, lymph, eyes, fatigue, liver, kidney Ph1May04 Ph2Aug04 Ph3Dec04. 25D<4 Mar05 Cover & NOIR in sun ~45 min/day No nonMP meds
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