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The Marshall Protocol Study Site > PROF. MARSHALL'S PERSPECTIVE > Prof. Marshall's Perspective > Data needed for FDA (DEXA, calcium use, BP improvements)


Data needed for FDA (DEXA, calcium use, BP improvements)
 Moderated by: Prof Trevor Marshall Page:  First Page Previous Page  ...  2  3  4  5  6  7  8  Next Page Last Page  
 

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jcwat101
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 Posted: Thu Feb 5th, 2009 12:08

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Lynn,

I would also ask, just in case this is relevant, what your calcium intake has been from food and supplements?

It is generally recommended to get near the RDA from food if one can, and if one can't , then using some calcium supplement without D can help make up the difference to achieve the RDA.

See:

Do I need to take a calcium supplement... 

for more information.

Joyce Waterhouse

Last edited on Thu Feb 5th, 2009 12:09 by jcwat101



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 Posted: Sun Feb 15th, 2009 22:47

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The results of my first ever DEXA scan are in.

My doctor was very concerned and wanted me to supplement with vitD or take Fosamax. I was successful in getting him to consider:

(1) Fosamax is known to make bones brittle,
(2) since being ill I have had low estrogen (peri meno-pauseal) & but now my cycles were regular for last 5 months,
(3) I had high 1,25D prior to staring MP & this may have affected bone density,
(4) my risk of fracture is low because I am careful & mostly sedentary,
(5) I have not been taking my cal/mag supplement faithfully (hardly at all).

(Another important factor may have been untreated subclinical low thyroid function.)

So he agreed with plan to actually take (not just have on shelf) Cal/Mag @ RDA levels & retest in 2 yrs.

DEXA scan results: 2/9/2009 (at age 47)

L1-L4 Spine:       0.903 g/cm2 (T: -2.4, Z: -2.1).
Left Femur/Neck:   0.767 g/cm2 (T: -1.9, Z: -1.2).
Left Femur/Total:  0.793 g/cm2 (T: -1.7, Z: -1.3).
Right Femur/Neck:  0.683 g/cm2 (T: -2.6, Z: -1.8).
  {note: right hip is only joint that has ever had pain}
Right Femur/Total: 0.742 g/cm2 (T: -2.17, Z: -1.7).

The right hip hurt quite a bit during my illness and at the beginning of the MP, but I can't remember the last time it did hurt, so I suspect that the MP has already been helping on that front.



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 Posted: Sun May 3rd, 2009 17:15

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cathys2007 wrote:
My D25 results have decreased to 17. I am happy to report that my recent bone density results show a 2% INCREASE in bone density. I expected a slowing of bone loss and am excited that there was no loss but an improvement.  

Not only do I feel better, but now I have tangible proof that MP is working.:D

Cathy :)
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Sunbeam
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 Posted: Wed May 6th, 2009 23:37

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Thanks Joyce, I do take a supplement. Also Australia does not have vit D in dairy so I am able to have milk and yogurt. I eat greens, take blueberries every morning so I think I am on the right track. I hope so.
 
Take care, Lynn.



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cathys2007
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 Posted: Wed Jul 29th, 2009 17:20

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These are my DEXA scan results. I’m including scans prior to being on the MP.
Before I started MP.

March 2007      no steroids

Scan Type:                          BMD                       T-Score                  Z-Score
AP Spine L2-L4                 1.222 g/cm2                0.2                            0.0
DualFemur/neck left           0.831 g/cm2               -1.5                          -1.2
DualFemur neck right          0.847 g/cm2              -1.4                          -1.1
 

I took steroids from March 2007 (after the first DEXA scan) until February 2008. I was also given high doses of Vitamin D in April 2007. I also was taking Boniva from April 2007 until May 2008.

May 2008
Scan Type:                          BMD                       T-Score                  Z-Score
AP Spine L2-L4                 1.181 g/cm2              -0.2                          -0.3
DualFemur/neck left           0.791 g/cm2               -1.8                          -1.5
DualFemur neck right          0.800 g/cm2              -1.7                          -1.4
 

Started MP 7/7/08: no Vitamin D, no Boniva, no steroids

April 2009
Scan Type:                          BMD                       T-Score                  Z-Score
AP Spine L2-L4                 1.186 g/cm2               0.1                           -0.1
DualFemur/neck left           0.807 g/cm2               -1.7                          -1.3
DualFemur neck right          0.816 g/cm2              -1.6                          -1.2 

The radiologist report indicates a 2% increase in bone density!  

Before starting MP, my scans show a decreasing bone density. I was on MP for 10 months and the DEXA scan showed improvements.

As indicated by my results…. MP works…. :D

Cathy:)

Last edited on Wed Jul 29th, 2009 17:27 by cathys2007



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MERCOUMA
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 Posted: Mon Aug 3rd, 2009 06:24

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Hello,

I experimented 2 hypotensive crisis (once a year). They were both associated to an important changement of habbits; i mean of my day usual program. They both solved by themselves; when i felt them, i lay down, breathe deeply and slowly and wait time to recover, that happens after more or less 15 minutes.

I hope it can help

Mathiew:)



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 Posted: Wed Oct 7th, 2009 18:27

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year   where  bmd     t-score           z-score
2007 L1-L4 1.058       87% -1.3          87% -1.3
2009 L1-L4 1.153       94%  -0.5         96% -0.4
           
2007 left femur        neck   0.870      81% -1.5  88% -0.9
2009 left femur        neck   0.928      87% -1.1  98% -0.3

2007 right femur        neck   0.777      73% -2.3  79% -1.6
2009 right femur        neck   0.862      81% -1.6  98% -0.8

I've been taking (most days) 500mg SolRay chelated calcium.

I did have two previous scans done, but they were at a different hospital.




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Prof Trevor Marshall
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 Posted: Wed Oct 7th, 2009 19:48

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:) :)
 

Cynthia S
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 Posted: Wed May 23rd, 2012 09:01

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Dear Dr. Marshall, is any of this data going to be put into a presentation that I can give to my GP.  I may well have to look to an alternative doctor to my MP doctor in Scottsdale, depending on outcomes.  I have an opportunity now, after my SO (significant other) approached our GP about his getting involved again with the protocol (he got cold feet when it was time for me to move to a second ABx), as it is clear that I and my SO are not getting ourselves into trouble after nearly 4 years, and are still very active in and positive about the protocol.  He specifically ask for some firm data on the results that have been seen on the protocol.  In addition to being a GP, he is also doing bone density testing, and I am sure that he would be particularly impressed with the fact that bone density increases on the MP, even tho our 25D tests are typically in the cellar.  How could he possibly argue about that.

Cynthia



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Prof Trevor Marshall
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 Posted: Wed May 23rd, 2012 10:31

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One of the weaknesses of our data collection, Cynthia, is that we don't force our members to have any specific testing done. Consequently we have very little data on the more esoteric testing, such as antibody testing and DEXA scanning.

We really don't have a large enough sample to say anything other than this: "with more than 6 years of experience, there is clearly no evidence that bone density is reduced, or bone strength reduced, while members are on the MP."

Why not give Doc our most recent peer-reviewed paper (Immunostimulation in..), and the transcripts of Inge and my presentations in Granada?

(the paper fulltext can be found near the end of Amy's thesis :)
 

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 Posted: Wed May 23rd, 2012 12:24

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Will do, Cynthia



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Joyful
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 Posted: Fri Apr 26th, 2013 11:09

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Hello, recently someone asked me about my experience with bone density
and dealing with any concerns about it when on the MP.

We have some good articles in the MPKB:
http://mpkb.org/home/diseases/osteoporosis_osteopenia
http://mpkb.org/home/diseases/hyperparathyroidism
http://mpkb.org/home/diseases/osteoporosis_osteopenia#patients_experiences

I will add reflections from my own experience here...

I am over 50 years old and have experienced the transition to menopause while on the protocol. I too have had bone density scans and I was not surprised when the density was not as good as could be hoped for.

I have researched the medical issues related to this and found it staggering how myopic the standard of care for this condition can be.

1. Calcium. The focus on "D" is due to the common idea that we won't absorb Calcium in the gut without it. That is the only association between "D" and bone density that is addressed.
  • This should mean that any question of "needing more D" can easily be put to rest if your serum concentrations of Calcium and 1,25D are within normal limits.


  • Not one practitioner has thought to look at these values when addressing my bone density results.
2. Estrogen. Estrogen is used in the bone building processes.
  • Not one practitioner noted my undetectable levels of estrogen as a problem.

3. Load-bearing. Intolerance to standing upright prevents me from weight-bearing exercises that trigger bone building via the slow twitch muscles.
  • Not one practitioner offered ideas for how someone with my OI condition could activate the slow twitch muscles enough to stimulate bone growth.
4. Nutrition. Some trace minerals such as boron are apparently linked to supporting bone growth.
  • Not one practitioner asked about my nutritional status, especially in terms of mineral intake from diet.
5. Measurements. DEXA scan report values are given out to the 3rd decimal point, but are only accurate to the second decimal point at best. This causes some practitioners to see a trend that is actually just inaccuracies in the measurement.
  • My personal physician is the only one I know of that has called the technician and asked for the machine tolerances.


  • All the "changes" in my density for the last few years are all within the tolerances of the machine. What this means is that in spite of not having "enough" estrogen or using any load-bearing exercise, my bone density is essentially the same.
6. Coordination. In frail elderly people, the key issue leading to falls is balance problems.
  • Not one practitioner has offered to check or even asked me if my balance and coordination were ok!

I say all that to say this...
  • I
  • am the only person motivated enough to research my health conditions and the latest information available (from as many perspectives as possible).

  • I am the only person who has to live with whatever interventions I choose to make in response to test results provided to me by my doctor.

Bone breakdown and growth are happening in our bodies all the time. The key is to support the body in whatever ways are tolerable to your condition until the protocol does it's work to restore correct function of the VDRs within the bone structures (see MPKB article linked above for more details).

In my case, I have chosen to add a special form of strength training that does not require more than 3 minutes of full loading for each muscle set. This has been shown to build muscle and bone capacity. In fact, it was originally developed as a safe way for older women with osteoperosis to build strength. (See: http://growingstronger.nutrition.tufts.edu/ or http://en.wikipedia.org/wiki/Super_Slow.)

What I don't recommend is increasing vitamin D in your diet. If you did, you would likely provoke stronger disease symptoms (what we call immunopathology) and that may be quite destabilizing to your recovery.



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 Posted: Thu Aug 29th, 2013 21:24

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Posted by LynR on 19 Apr 2013 10:28 am

Dexa scan has improved  Vitamin D25= 9

I began the MP 7/08 by cutting out sunlight.  Began benicar around 12/08 I have never been off benicar since then, although there were several times when I stopped abx, as doing so increased my energy level.  

My D-25 levels were 7/09 = 22, 6/11 = 9, 3/12 = 8, 3/13 = 9

My first Dexa scan was something like 2003 or earlier, when I was told I had the bones of a 19 year-old.  My d/o/b is 1950.  Then I got chronic fatigue in late 2003, and pretty much stopped moving, leaving work in 2006, which again cut down on any activity, walking, etc.  My activity level has gradually improved since maybe 2010, and I have been going to the gym for mild weight lifting less than twice a week, average. 

After the Dexa scan in 2010, numbers to follow, I began taking 400mg calcium citrate without D, and 250 mg vitaming C, because I’m also taking 20 mg omeprazole in the morning, at about 10 a.m., and 2 p.m., i.e., between meals.  This was fairly consistent, because I took it with the benicar dose at that time.  

Dexa scans:
2008     spine -1.9 osteopoenic
            neck - 0.7 normal
            total hip -0.4 normal
2010     spine -2.3 osteopoenic
           neck - 1.2 osteopoenic
           total hip -0.4 normal
2013     spine -1.6 osteopoenic, but improved
           neck -0.7 normal
           total hip -0.01 normal
I also drink a lot of milk, probably 2+ gallons a week, but that amount has not changed.

Bottom line, with a low D-25 level, according to non-MP standards, I have been able to improve my Dexa scan results.  


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 Posted: Wed Sep 10th, 2014 12:36

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Summary - still in OSTEOPENIA category

Left femur & spine looking good, but right femur
went backwards.

year   where              bmd     t-score(young adult)   z-score(age-matched)
2007 L1-L4                   1.058       87%  -1.3         87% -1.3
2009 L1-L4                   1.153       94%  -0.5         96% -0.4
2014 L1-L4                   1.178       97%  -0.4         99% -0.1
           
2007 left femur neck     0.870      81% -1.5  88% -0.9
2009 left femur neck     0.928      87% -1.1  98% -0.3
2014 left femur neck     0.976      97% -0.4 103% -0.2

2007 right femur neck   0.777      73% -2.3  79% -1.6
2009 right femur neck   0.862      81% -1.6  98% -0.8
2014 right femur neck   0.794              -2.1          -1.2

(BMD = bone mass density in gm/cm3)

               
2015        % change from most recent         % from baseline
Spine                  2.2%                                11.3%
Left femur neck   5.2%                                12.2%
right femur neck -7.9%                                -7.1%



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sarcoid diagnosed 1991, probably started 1983
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Joyful
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 Posted: Wed Sep 10th, 2014 13:03

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I sometimes ponder the way my right side has always had more symptoms.
A doctor once observed that people seem to have a "dominant" side in terms of symptoms.

But we all use our right side more for driving a car, so is there less or more healing reserves on the right? And most men wear their wallet in the back pocket on the right.

I notice a lot of people have more trouble with the right hip. But not everyone. My right hip was the one with pain before the MP. It was the one with indications of more IP. Can't really blame carrying a cell phone in the right front pocket, can we?



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 Posted: Wed Sep 10th, 2014 13:47

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Have you had a recent 25-D assay, Chris?

Chris
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 Posted: Wed Sep 10th, 2014 19:48

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No I haven't checked 25-D recently.  I'll see if I can get the doc to approve one.



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 Posted: Wed Sep 10th, 2014 20:57

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There are other options... Home 25-D test kits  :)



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Trudy.Heil_NP
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 Posted: Mon Sep 15th, 2014 14:13

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My most recent BMD results:

BONE DENSITY (5-1-14) Lumbar spine: BMD 0.959 g/cm2 T-Score: -0.8 NORMAL; Left Femoral Neck: BMD 0.774 g/cm2 T-Score: -0.7 NORMAL; Right Femoral Neck: BMD: 0.752 g/cm2 T-Score: -0.9 NORMAL.

Trudy



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Sallie Q
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 Posted: Sat Jul 18th, 2015 09:50

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first DEXA scans

Hip scan not so great
Region  Area (cm2)  BMC (g)  BMD (g/cm2)  T-score  PR (%)  Z-score  AM (%) 
Neck         5.04             3.65        0.725         -1.1        85         1.0        118
________________________________________________________________
Total BMD CV 1.0%,  ACF - 1.025,  BCF - 0.997,  TH - 5.872 
WHO classification: Osteopenia
Fracture risk: Increased

Spine
Region  Area (cm2)  BMC (g)  BMD (g/cm2)  T-score  PR (%)  Z-score  AM (%) 
L2        13.16          12.37        0.940         -0.8        91         1.6        123
L3        13.92          15.18        1.090           0.1      101         2.6        135
L4        17.45          16.86        0.967         -0.9        91         1.8        125
Total.    44.52          44.41        0.997         -0.7        92         1.8        125
________________________________________________________________
Total BMD CV 1.0%,  ACF - 1.025,  BCF - 0.997,  TH - 6.994 
WHO classification: Normal
Fracture risk: Not increased

after ~3 years on MP followed by 3 years OLM 20mg 8-12 yours apart;
2yrs minimal light exposure, 4 yrs modest light exposure
3 yrs minimal dietary v.D, 3 yrs modest dietary v.D
heavy use of cream, otherwise V. little dairy (have problems with milk)
(eat out once or twice a week, which means at least once a month DHubbie dumps all his cauliflower with cheese sauce on my plate)
Hardly any Ca supplement (take magnesium for cramps,sometimes use PMT minerals instead, which has some Ca and Zn).  Not measuring BP

Hubbie not on MP:-
           both scans WHO classification: Osteopenia, both scans worse numbers.
P.S. after reading this thread today, I will eat more of the grated cheese fast food place puts with the salad .

Last edited on Sat Jul 18th, 2015 10:21 by Sallie Q



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