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

 Moderated by: Prof Trevor Marshall  
AuthorPost
Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
I need some help in quickly getting together some data the FDA has requested. We have just made a significant step forward, and I need to get data together to capitalize on this opportunity...

Firstly, any of you who had DEXA bone scans, or other measurements of bone density, and which were performed both before starting the protocol and also during the protocol, can you please post the data so that we can collate it. We may need to get you to ask Doc for the actual lab printouts, but at this time I just need a raw count of who has had their bone densities measured more than once, and whether it went up, down, or stayed about the same...

Second, anybody who has a copy of, or who can get a copy of, any letter from Sankyo talking about the safety (or lack of safety) of Benicar at any dosage level, I need to know what words the letter uses, and I may need you to mail me a copy. But right now all I need is to know that you/your pharmacist/your doctor received information (preferably written), from Sankyo, that the dosage of Benicar used in the MP might in some way harm you...

Third, any of you who have experienced particularly low blood pressures (under 90/55), and whose pressures have returned more towards the normal (120/60), can you please let us know. We don't think we will need to assemble written data on this,

There may be other things we need as we prepare the documents requested by the FDA, and if so, I will post further requests as an addendum to this message :)

Feel free to post here with information, or, if it is private, you can PM me.


Thanks for your help
Trevor

added: 3/28:-
Those of you posting DEXA scan data, can you please indicate whether you were taking any calcium supplement, and what form of calcium that was (citrate, etc)? The brand name would be helpful.

Also, if you were taking other supplements, eg magnesium or phosphorus, please make sure you let us know (by PM, if necessary).

Also let us know what your other major calcium sources are and either the amount of the food (eg. a cup of yogurt a day) or, even better, if you can, an estimate of the average amount of calcium from them based on the label or other information (eg., see amounts of calcium in food at: http://www.marshallprotocol.com/forum32/1083.html )

Once again, this detail is only necessary from members who have the DEXA data.

Grace
inactive member
 

Joined: Mon Sep 13th, 2004
Location: Australia
Posts: 396
Status:  Offline
Dec 2002 {CFS 3yrs}

Hip BMD =1.199, Hip T-score=1.86, Spine BMD=1.306, Spine T-score=1.39

June 2006 {MP 18 mths}

Hip BMD =1.198, Hip T-score=2.11, Spine BMD=1.332, Spine T-score=1.75.

Can get BP score from doctor's rooms.He has confirm I no longer have POTS :D

Hityty
inactive member


Joined: Tue Jul 11th, 2006
Location: Leadville, Colorado USA
Posts: 71
Status:  Offline
MP 8/06 / (Mod phase 2 on 3-24-07) Mino 25mg q3D & Benicar 40mg q6H

My BP was high before starting MP: (highest BP was 162/107 & 171/100)

After starting MP, BP lowered to & maintained at "normal" levels. (avg: 110/60)

My BP dropped 2-3 months ago, tested at doctors Feb-07 at: (80/62)

Cut Beni dose to 40mg q8h for 2 weeks, BP steadily rose & I returned to Beni dose 40mg q6h.

BP has remained at normal levels last 30 days averaging at: (105/66)

shegeek
inactive member


Joined: Wed Jan 19th, 2005
Location: San Jose, California USA
Posts: 89
Status:  Offline
I had a DEXA done a couple of weeks before starting the protocol (I was avoiding light and D), and I am still waiting on the results of one I had done about three weeks ago. I just emailed my doctor about it, and I will post the results as soon as I can.

scooker48
Member*
 

Joined: Mon Jan 3rd, 2005
Location: Sunnyvale, California USA
Posts: 1738
Status:  Offline
I will get the BP readings from my MP doctor's chart as soon as I can see her--maybe Thursday 3/29.  I trust this is soon enough...

Sherry

prugg21
Health Professional


Joined: Tue Mar 14th, 2006
Location: USA
Posts: 303
Status:  Offline
When I started the MP a year ago, my BP was typically in the 70/40 range.

It is now normally anywhere from 85/55 to 100/70.

Pam

wwspic36
inactive member
 

Joined: Thu Oct 14th, 2004
Location: USA
Posts: 36
Status:  Offline
Last year at this time my blood pressure was 78/40.  I didn't tell my doctor because I was afraid that he'd talk me out of taking the Benicar.  This year it is 110/60 and sometimes even higher.  I have taken the Benicar t.i.d. for the last 2 1/2 years without any interruption.  It's not the Benicar that makes the blood pressure so low; it's fighting the illness.  I've found that as I heal my blood pressure returns to normal.  I also think that I have better thyroid and para-thyroid function.  I never thought that was my problem although.  What a nice benefit!  

Bbnomas
inactive member
 

Joined: Tue Oct 31st, 2006
Location: Norfolk And Haymarket, Virginia USA
Posts: 45
Status:  Offline
Am I missing something? Has someone heard that Benicar at MP doses is bad for us? Why the sudden concern and what specifically is it regarding? Just BP or something else? Please advise.

My BP was once 68 over 39 something crazy but I never had any sense of impending doom enough to go to the ER and I was having severe BP symtoms - close to passing out alot but that was at the beginning and now its mostly 100/50. Once a month after my period I have pretty dehabilitating hypotensive  symtoms - it fits in with my history of having sever lyme flares at that time each month. but the hypotensive symptom sgo away within that week and then I'll have some low BP symptoms here and there in between periods but nothing horrible or scary. Salt water helps with that as well. I have no major worries at this point re: BP and benicar. My sense is that it will mostly go away after I improve more on the MP.

:o) Meredith

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Merideth - Cool it -:):)
I am looking for data to buttress our observation that there is no problem. Don't read any further into it than that. A scientist has to do this all the time...

Alayne
inactive member


Joined: Tue Sep 20th, 2005
Location: California USA
Posts: 579
Status:  Offline
For years pre-MP I tended to have what was labeled low pressure. 85-95/65-75.

After starting MP, the lowest BP reading was 73/42 - last year. However, I didn't feel any difference.

Latest check-up a couple of weeks ago, it was 100/80.

I've felt no different with the BP variances.

Perhaps I should note here that I've increased my salt intake since starting the MP. I've felt a natural urge to do so. Pre-MP I ate very little salt.

-Alayne

Last edited on Tue Mar 27th, 2007 18:04 by Alayne

wytnez
Member*


Joined: Sun Nov 28th, 2004
Location: Texas USA
Posts: 780
Status:  Offline
Hi MP team,

My BP was about 112/74 pre MP and the last reading was 130/76.  The time prior to that was 112/80 some where around there.  It never gets below 98/60 on my home BP monitor.

Hope this helps.

Saj

JudyBeauty
member


Joined: Fri Jul 16th, 2004
Location: Highland, Indiana USA
Posts: 199
Status:  Offline
My blood pressure pre Mp was in the 135/85 range whenever I went to the doctors office and now it's been in the 112/70 range at the doctors office.

I don't take it at home.

Judy

Bbnomas
inactive member
 

Joined: Tue Oct 31st, 2006
Location: Norfolk And Haymarket, Virginia USA
Posts: 45
Status:  Offline
TM:

No need for me to cool it - Im pretty chill with Benicar if you read my entire post, but I feel its a vaild question. If you dont wish to answer thats up to you. I dont know that you as a scientist have to do this all the time and still I'm wondering what is  prompting this. It something I'd ask my dr. or anyone if they said as much. :) Im sure you can understand that

Meredith

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Meredith,
Please let me be the scientist, and trust what I say on its face, without trying to impune any ulterior motivation:)

PaulT
inactive member
 

Joined: Thu Feb 24th, 2005
Location: Sydney, Australia
Posts: 373
Status:  Offline
Blood pressure pre MP taking Micardis 80+ and Zanidip 10mg daily around 140/95

Since starting MP around 120/80

Paul

sunflower
inactive member


Joined: Sun Jul 24th, 2005
Location: Yuba City, California USA
Posts: 393
Status:  Offline
hi dr. marshall,

my first bone density analysis was done 2-2-2004 before beginning the MP.  the results were:  spine bmd=1.157  t-score=-0.4     femure bmd=o.784  t-score=-1.8

after 8 months on the MP i had another one done.  the results were:  spine bmd=1.106  t-score=-0.6     femure bmd=0.717  t-score=-2.3

from the time i had the 1st bone density analysis done, i was counselled to take 800 iu of vitamin d per day (which i did until starting the MP in november of 2005).

regarding the blood pressure, since beginning the MP i have taken benicar 40 mg q6h--a total of about 17 months now.  my BP has regularly been in the 80's-90's/50's-60's since the start, but i do notice when i am feeling better and not having as much immunopathology, my bp always tests higher (low 100's/high 60's) even though the dose and schedule of benicar remains the same.

          good luck with whatever opportunity is at hand.....sun

DMiller
inactive member
 

Joined: Tue Aug 23rd, 2005
Location: Rockledge, Florida USA
Posts: 148
Status:  Offline
Pre MP my bp was typically 115-125/70-80. After starting the Benicar it dropped to 95-110/58-68 for a couple of months, but then returned to 115-120/70-80.

Is the FDA close to granting orphan status to Benicar? Thank you for all of your hard work on our behalf. It is greatly appreciated.

Freddie Ash
...


Joined: Fri Apr 8th, 2005
Location: LeSage, West Virginia USA
Posts: 1019
Status:  Offline
HI ALL

This is Fred in WV.  I have had a lot of low B/P over my life.  I was getting about 84/45 reading after the by pass surgerys.  Since I have been on the MP I get 110/58 readings now.  I have even had reading as low as 48/26 before the MP.

I have not had a DEXA bone scans.

I sent you a faxed copy of a letter my doctor received about the benicar once.  I will have to look for it if you need another copy of that.  Let me know.

Also, you all know about my problems with my family doc last year at this time and the benicar being safe.  Well last week I ask him again why he stopped the Rx for the benicar for me and he said that the company told him if something happened to me he would be sued.

There is my story about the benicar. I hope this helps.

Remember, we are all in this together and I am pulling for us.

Your friend in sarcoidosis

Freddie

IngeD
Member


Joined: Thu Jan 25th, 2007
Location: Melbourne, Australia
Posts: 1063
Status:  Offline
I have not had bone scans or had any letters re benicar but can report something on blood pressure.

Prior to commencing MP I was suffering from hypertension and with 2 meds (coversyl 5mg and teventan 6mg) my blood pressure was still elevated anything from 120/80 to 140/90 approx. It was also very erratic. Forked out for 2 expensive monitors because I couldn't figure out the wild variations!

When I first started on the MP with Benicar 40 mg Q6h and discontinued all other bp meds, my bp started to drop over the first weeks until the lowest reading of 80 / 60 1 month into treatment. Since then it has steadily climbed back up and last 2 readings were 100 /60 and today 112/68.

I will check if my doctor has received any letters and also check with the pharmacy. Inge.

Claudia
member


Joined: Fri Sep 23rd, 2005
Location: Cooroy, Australia
Posts: 501
Status:  Offline
My Blood Pressure story:

Pre MP = always normal/low around 112/78

Benicar 40mg q8hr begins Feb 2006. After 1 week, BP stable at 86/50

Phase II = cruising along, BP generally around 80/40

Phase III = November 2006 - Kidneys affected with strong IP symptoms, BP drops to 74/40   Benicar increased to 40mg q6h - 1 week later, Kidney symptoms are relieved, and BP has gone up to 94/57 and stable since then.

:D Claudia Gaber

(If you can't use "Foreigners" in your study, list me as a resident of Crystal River, Florida, where I still am technically a resident.)

Joy
inactive member
 

Joined: Sun Jul 31st, 2005
Location: USA
Posts: 256
Status:  Offline
Have not had a bone scan, but my chronic high blood pressure was the first and most dramatic thing for me to get healed on the MP.

Pre MP I had a 13-year history of high blood pressure which no meds would bring down (mainly because I could not tolerate most of them at anything other than a half dose). Highest reading ever was 180/120, and average was 160/105.

BP immediately came down into normal range after commencing Benicar q6h, and even went a bit low for a week or two after starting mod Ph 2 (95/65 was lowest). It is now back up to around 115/80. Thank you Benicar!!!

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Those of you posting DEXA scan data, can you please indicate whether you were taking any calcium supplement, and what form of calcium that was (citrate, etc)? The brand name would be helpful. Also, if you were taking other supplements, eg magnesium or phosphorus, please make sure you let us know (by PM, if necessary).

Also let us know what your other major calcium sources are and either the amount of the food (eg. a cup of yogurt a day) or, even better, if you can, an estimate of the average amount of calcium from them based on the label or other information (eg., see amounts of calcium in food at: http://www.marshallprotocol.com/forum32/1083.html )

Once again, this detail is only necessary from members who have the DEXA data.

Last edited on Wed Mar 28th, 2007 09:49 by Prof Trevor Marshall

lucindarose
Health Professional


Joined: Sun Mar 26th, 2006
Location: Nottingham, United Kingdom
Posts: 275
Status:  Offline
I had a DEXA scan last March (2006).  Does it matter that all the measurements could not be obtained?  I do remember them saying that it was above average for someone of my age and on corticosteroids, however, they could not obtain all measurements as the scanner could not differentiate between bone and kidneys in some places due to my severe nephrocalcinosis.  I will gladly post these results as soon as I can get hold of them if only a few measurements will help?

Regarding blood pressure:- pre MP it was around 100/60 (on 10mg/day Benicar) and since commencing Benicar 40mg Q6H it is usually around 85/45.  I don't feel I have any major symptoms associated with this blood pressure, only occasional transient dizziness associated with changes in posture.  I have had occasions where it has been more 'normal' on Benicar at MP levels at around 110/70 but only on a few occasions.

Anna :cool:

P.R.N.
.
 

Joined: Thu Dec 2nd, 2004
Location: USA
Posts: 2115
Status:  Offline
My blood pressure would drop at times in beginning to low of 78/48 with stronger herx. Now it is stable at 110/65 on 40mg of Benicar q6 after 25 months on MP. Never had a dexa-scan. No letter from manufacture. best, P.B.

edj2001
Member


Joined: Mon Oct 17th, 2005
Location:  Allen, Texas USA
Posts: 362
Status:  Offline
1. BONE DENSITY: 

Region                                    BMD g/cm^2             T-score           Z-score 

L1-L4 Vertebral bodies
Scan date Jan 21, 05                1.116                           0.2                   0.9
Scan date Feb 27, 07               1.015                           0.0                   0.1
Left Forearm
Scan date Jan 21, 05                0.699                           0.4                   1.2
Left Femoral neck
Scan date Feb 27, 07               0.754                           -1.3                  -0.2 
Notes:
Tests were conducted on different machines
No calcium supplements (diet only), milk pre MP, yogurt & cheese on MP 
Ended prednisone April, 2005 after several years at 20 mg/day
Started MP Dec 2005

2. BLOOD PRESSURE:

Before MP:  120/80
Currently during MP: varies considerably 112/60 to 76/45

jrfoutin
Research Team


Joined: Mon Aug 8th, 2005
Location: Utah USA
Posts: 5000
Status:  Offline
JRF|BP
No Benicar:
AUG/09/05 _ 160 / 96

4 days MP-Benicar only:
AUG/13/05 _ 136 / 82 _ Ph1

OCT/04/05 _ 134 / 76 _ ModPh2
NOV/30/05 _ 130 / 90 _ ModPh2
JAN/11/06  _ 132 / 88 _ Ph2
MAR/08/06 _ 128 / 88 _ Ph2
JUN/28/06  _ 118 / 80 _ Ph2
AUG/24/06 _ 120 / 82 _ Ph3
OCT/19/06 _ 108 / 78 _ Ph3
DEC/18/06 _ 114 / 84 _ Ph3

FEB/28/07  _ 128 / 95 _ Ph3
(acute E. coli kidney infection day)

Note: These are all taken at Dr's office and on file as my medical record.

zackone
Member


Joined: Tue Oct 5th, 2004
Location: Watertown, New York USA
Posts: 267
Status:  Offline
Trevor,

I went through my notes since I began the MP, and the average BP I had during my initial couple of months was 115/66.  Previous to the benicar, it was 126/77.  Now, it is commonly 125ish/70ish.  I found very few notes of BPs under 100/60.

Regards, Fred

Carole
Support Team


Joined: Mon Jul 19th, 2004
Location: Florida USA
Posts: 742
Status:  Offline
I have detailed results from two DXA scans on 9/08/03 (pre-MP) and from 3/21/05 (early phase 2 MP) that I will scan and attach to an e-mail.  My ob/gyn wanted another one done this spring because of the increased fracture risk, so ironically it is scheduled for tomorrow.  I will send those details ASAP.

Besides a multi-vitamin (with D, calcium, and magnesium, etc.) and additional C (1000-3000 mg.), E (400 iu), glucosamine (1500 mg) and chondroitin (1200 mg) with C (60 mg) and manganese sulfate (2 mg), I was also receiving additional--  

(June 2002-? late summer/2003) Coral Calcium Daily, distributed by Today's Health, Beverly, MA --A (3000 iu), C (80 mg), D3 (820 iu), E (60 iu), calcium 530 mg (from 1475 mg of coral calcium), magnesium 265 mg (from 1475 mg coral calcium & magnesium oxide), zinc oxide (15 mg), copper oxide (3 mg), and in a proprietary base: Coral Calcium (1475 mg).

(? late summer/2003-Jan. 2004) Coral Calcium by Nature's Bounty, Bohemia, NY--C (5 mg), D (400 iu), calcium (370 mg from 1,000 Coral Calcium), and magnesium (56 mg as magnesium oxide and magnesium citrate).

I definitely took this well before Coral Calcium, but I'm thinking that I may have also added this tablet as well-- calcium carbonate (333 mg), magnesium oxide (133 mg), and zinc sulfate (5 mg).    

I also had years of stomach upsets, so I took several Calcium Antacid Tablets on most days (calcium carbonate 500 mg).

Since I was diagnosed with osteoporosis from the first DXA scan (9/03), each meal contained several servings of some sort of calcium and vitamin D (fish, eggs, cheese/milk products, yogurt, cereal, etc.).

With all of this supplementation, my D-levels were very slow in falling-- 

1/2004 (41)
7/2004 (33.48)
1/2005 (22.56)
7/2005 (20.48)
1/2006 (14.4)
7/2006 (14)
1/2007 (9)
I have more blood tests from last week to post pending the results.  

Thanks so much to all! . . . Carole  :)

ShrnHml
...


Joined: Fri Jul 16th, 2004
Location: St. Louis, Missouri USA
Posts: 814
Status:  Offline
Trevor...........I am due for a bone scan, as it has been two years since my last one. By what date do you need this informtion? With much appreciation for your work.       ............Sharon

GeorgeinRollaMO
inactive member


Joined: Mon Aug 9th, 2004
Location: Rolla, Missouri USA
Posts: 538
Status:  Offline
Trevor,

I had two DEXA scans preMP and one a few months after starting the MP, and had supplemented LOTS with calcium for about nineteen years pre-MP.  Paperwork is not filed for easy access.   Also, had granulomatous disease in the  chest area, "as evidence by the depositing of calcium in the soft tissue" by xray.

I will get back by tomorrow with figures.

DV...aka, George

JT
inactive member


Joined: Mon Aug 8th, 2005
Location: San Diego, California USA
Posts: 95
Status:  Offline
Before starting Benicar: BP consistently on low side of normal.

After starting Benicar Q8H: BP still consistently on low side of normal.

After switching to Q6H dosing: one low reading of 90/50, then readings returned to low side of normal and have remained there since.

All readings taken monthly in MD's office.

I love trees
inactive member


Joined: Thu Sep 21st, 2006
Location: Spokane Valley, Washington USA
Posts: 141
Status:  Offline
I had lowish BP for many years pre MP, usually in the 90/65 range.  I have not had one BP reading that low since starting MP.  In fact, most of the time it's about 112/72.  My doctor was worried that my lowish BP would go too low on Benicar, but that has not been the case at all.  In fact, once, about 2 months into Benicar, it was 138/80.  (I had been stressed just before BP was taken.) 

Carol

B R H
inactive member
 

Joined: Mon Oct 16th, 2006
Location: Reno, Nevada USA
Posts: 272
Status:  Offline
I have BP data taken almost weekly going back about 3 years, daily for about the last month or so.

                AVG      MIN      MAX   STD DEV     TREND
PRE-MP:  118/69  100/54   140/86    7/6            flat
MP:          99/61   83/49   124/69    8/5      slightly down

Last edited on Wed Mar 28th, 2007 19:15 by B R H

sunflower
inactive member


Joined: Sun Jul 24th, 2005
Location: Yuba City, California USA
Posts: 393
Status:  Offline
dr. marshall,

i'm one who has reported my bone scans, so here's info on my calcium intake:  i had been taking calcium/magnesium supplements for many years (usually 1000 mg cal/500 mg magnesium per day).  at the time of my first bone density test--feb 2004--i started taking tums at 1500 mg per day along with a magnesium supplement at 400 mg per day. 

when i started the MP in nov 2005, i stopped the calcium but continued the magnesium (for bowel regularity).  i'm not certain how much calcium i get in my diet (or did in the past), because i never drank milk or ate yogurt on a regular basis.  i've always eaten cheese and some ice cream, though.  hope this helps a bit.....sun

Grace
inactive member
 

Joined: Mon Sep 13th, 2004
Location: Australia
Posts: 396
Status:  Offline
 
Dec 2002 {CFS 3yrs} 40 yrs old female

Hip BMD =1.199, Hip T-score=1.86, Spine BMD=1.306, Spine T-score=1.39

Supplements- Co Q10, colostrum, brewers yeast, ultra muscleze- magnesium, no other calcuim or multivitamin or supplement.

Diet- full strength milk{no D} less than 250 ml daily, 3-5 serves of cheese / yoghurt PRE WEEK. Had been AVOIDING all fish for 6mths. Not avoiding eggs and sunlight.

.....June 2002 is when I work out that eating fish made my pain worse. My good confuse Doc :shock: ordered  fish allergy test-negative,I think I had D25 blood test-low {can get this if you want}, Order DEXA tests.... before 'getting it' MP and meeting Dr Marshall;)



June 2006 {MP 18 mths} 44yrs old female

Hip BMD =1.198, Hip T-score=2.11, Spine BMD=1.332, Spine T-score=1.75.

Supplement-None including calcium avoiding all D.

Diet- light milk{no D} less than 250 ml daily, less than 3 serves of light cheese  PRE WEEK.{Trying to get and keep d25 down}

Q Do you still want BP results or any other relative information that my Doc can give.I don't want to bug him too much or often.So I will wait until I know exactly what you want

Husband's BP was always very low 80-70/50-40 or ,so pre MP  he took hydralazine 100mg to IMPROVE his BP.I can get his BP history also if you need it.

Last edited on Wed Mar 28th, 2007 19:21 by Grace

Christina
inactive member


Joined: Tue Dec 6th, 2005
Location: St. Louis, MO, USA
Posts: 215
Status:  Offline
In 2003, I had a bone scan showing osteopenia.  As a result, took Actonel for a year and tons of vitamin D, mag, and calcium (in the form of coral calcium) for years after and engaged in weight bearing exercise 4-5 days a week.  I had another bone scan about six months prior to starting the MP (Oct. 2005) showing no improvement.  Unfortunately I haven't had one since.  So, you probably can't use that for your purposes, but I think it's really interesting that using a bisphosphonate, tons of D, calcium and exercise showed no improvement.  I was only on 2.5mg daily of prednisone during that time.

My "normal" blood pressure pre-MP was always low averaging 90-100/60-70.  For the first two months of the MP it dropped lower averaging 70s/50s but then went back up to my "normal" and remains there.  Monday, at the doc's office, my BP was 92/65.  Occasionally it will read over 100-110/75-80 but very rarely.

I've seen no letter from Sankyo.

I hope this helps you.

Christina

Jigsaw
Research Team


Joined: Thu Jul 13th, 2006
Location: Australia
Posts: 1038
Status:  Offline
Pre-MP my BP averaged about 135/80 with a range 130-160/70-90.
Three months pre-MP, I went on 150mg/day Avapro (irbersartan)which lowered it to about 126/65 with a very small range. Since starting olmesartan medomixil (Benicar), at 40mg Q6hr for 1 month, then 40mg Q8hr for the next month, my BP has averaged 114/58 with a range 97-134/49-68 for 26 readings. There was no obvious difference between Q6hr and Q8hr. One reading with my cardiologist was 160/90: but that was after he had asked how long I going to continue with this experiment.

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
LOLOL :) :) 'experiment' - I love it...

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
Sun,

You mentioned eating cheese and ice cream.  How much per week would you estimate? 

Joyce Waterhouse

scooker48
Member*
 

Joined: Mon Jan 3rd, 2005
Location: Sunnyvale, California USA
Posts: 1738
Status:  Offline
The following blood pressure readings come from my medical records at my MP doctor's office.

2/15/05      120/70
2/23/05       100/60
3/9/05        100/70
4/8/05         98/60
5/5/05          100/60
6/8/05          100/60
6/14/05         90/60
7/9/05           120/60
8/15/05          100/60
9/23/05           100/60
10/17/05          90/60
11/11/05           110/60
12/14/05           120/70
2/14/06              120/80
4/11/06               100/60
6/14/06               110/60
8/14/06                100/60
10/17/06               120/80
12/18/06               120/70

Pre-MP, my blood pressure history was always on the low side.  I thought it would help me live longer; what a mistaken notion!

Sherry

GeorgeinRollaMO
inactive member


Joined: Mon Aug 9th, 2004
Location: Rolla, Missouri USA
Posts: 538
Status:  Offline
Trevor asking for DEXA (DXA) test information has made me look at my reports rather closely.  One misconception that I had was that I had been DXed with "osteoporosis" at the first hospital that I had a DEXA test done.  Re-reading the report, I see that I was given a DX of "osteopenia".  What I remembered was all of the talk in the "Recommendations" section of the report about osteoporosis.  I remembered that being my DX.  I need to correct my Progress Reports!

On June 6, 2002, I was given an ultrasonic test results by Life Line Screening out of Cleveland, Ohio, that said that I was at "High risk for bone diminishment -- Heel BMD T-score of -1.3"

On January 27, 2003, I did a second test by that outfit and was given a second report of "High risk of bone diminishment -- Heel BMD T-score of -1.2"

I was amazed after that first Life Line Screening test report!  I had been taking 1,000 to 1,500 mg (with some "vitamin" D) of a five-source of calcium sold by Nutrition Headquarters, Illinois, almost every day since 1985 until August 2002....dolomite, oyster shells, egg shells, and two others...when I read some good things about taking calcium and "vitamin" D3 by Robert Barefoot, and the report by the National Cancer Institute in the April 2002 Journal of Occupatinal and Environment Medicine with doing sunlight for cancer prevention.  Plus drinking at least one to two quarts of skim (fortified) milk per day plus eating some eggs, some cheese, ice cream, and other sources of food calcium..maybe, 400 to 500 mgs per day of calcium, at least, perhaps 800.   I had fallen and fractured a femur at the hip, left elbow seriously, and jaw in three places.  I did not want that to happen again.

On August 4, 2003, I wrote a report that said that I had been taking Marine Coral calcium and calcium citrate for a total supplementing of approx. 2,500 mg.  I also was taking magnesium asporotate and magnesium citrate for a total of supplementing of approx. 1320 mg.  I was taking 5,200 I.U twice a day of "Vitamin" D for a total per day of 10,400 I.U. per day, PLUS taking some 1,000 mg twice a day...total 2,000 mg...of fish oil concentrate, for the EPA/DHA,  PLUS eating a lot of fish and shellfish.  I know that I increased the D supplementing up to 16,000 I.U. per day by the time I heard of the MP on June 10, 2004, and stopped all the D.

I really expected me to have very strong bones!!!  High bone density!

I talked to my PCP in July 2002, who sent me to a "bone mineral specialist" at Washington Un School of Med., who had me do a DEXA test at my local hospital.  The result was "osteopenia", with the following results"

Site                          BMD        SD T score       SD Z score (age matched)
Left femur neck          0.970         -0.8                0.5
Left total femur          0.933         -1.2               -0.3
Right femur neck         0.698         -2.9               -1.6
Right total femur         0.978         -0.9                0.0
Lumbar L2-L4 ave.       1.349         0.9                  1.2

The bone mineral specialist then did a second DEXA test (with newer equipment) at the Wash Un School of Med on August 1, 2002, with follow-up test in succeeding years done at the School.  The results as follows:

Site: Spine               BMD           T-score        Z-score
2002
L1                            1.100           0.8              1.6
L2                            1.170           0.7              1.5
L3                            1.149           0.4              1.3
L4                            1.233           0.8              1.7
Total                        1.163           0.7              1.5
(WHO Class.  : Normal)
2003
L1                            1.116           1.0              1.7
L2                            1.157           0.6              1.4
L3                            1.049          -0.5              0.4
L4                            1.163           0.2               1.0
Total                        1.122           0.3               1.1
(WHO class.  : Normal)
2004
L1                            1.105           0.9                1.7
L2                            1.195           0.9                1.8
L3                            1.054          -0.4                0.4
L4                            1.156           0.1                 1.0
Total                         1.128          0.3                 1.2
(WHO class.  : Normal)
Site: Left Hip
2002
Neck                         0.885          -0.3                0.8
Troch                        0.805           0.2                0.6
Inter                         0.946           -1.4              -0.9
Total                        0.896            -0.9              -0.3
Ward's                      0.726            -0.4               1.4
(WHO class.  : Normal)
2003
Neck                         0.981            0.4                1.5
Troch                        0.777           -0.0               0.4
Inter                         0.935           -1.4              -0.9
Total                        0.894            -0.9              -0.3
Ward's                      0.655            -0.9               0.9
(WHO class.   : Normal)
2004
Neck                        0.885             -0.3              0.8
Troch                       0.774             -0.0              0.4
Inter                        0.945             -1.4             -0.8
Total                        0.881             -1.0             -0.4
Ward's                      0.724             -0.4              1.5
(WHO class.  : Osteopenia)
Site: Right Hip
2002
Neck                        0.836              -0.7              0.4
Troch                       0.786              0.1               0.4
Inter                        0.963             -1.3              -0.8
Total                        0.887             -1.0              -0.4
Ward's                     0.596              -1.3               0.5
(WHO class.  : Osteopenia)
2003
Right Hip: Not done
2004
Neck                        0.829              -0.7                0.4
Troch                       0.811               0.3                0.7
Inter                        0.975              -1.2               -0.6
Total                        0.900              -0.9               -0.2
Ward's                      0.527              -1.8                0.1
(WHO class.  : Normal)
Note:  There does not seem to be "one" figure for bone density for myself.  Different parts of my body are at different density.  IMO, that puts me at risk for fracture at different parts of my body.  Also, I would not say that I have very dense or strong bones when compared to a thirty year old looking at those scores.  There must be a reason for the decrease in density.  It varies for different individuals.  Pleomorphic bacteria...Th1 inflammation?  And not age, per se?

Also, on September 3, 2002, I had a chest xray which report of the result said, "Note is made of calcified granulamotous disease as evidenced by calcified mediastinal lymph nodes."  This was before I had really increased supplementing with calcium very much.

My blood pressure averaged approximately 128/72 preMP.  After Benicar, it averaged 106/60 with the type of blood pressure machine that the Astronauts took with them into space.  It once got down to 73/43.  NO problem!  However, now that I am off Benicar for two and a half months, on vacation from the MP, I can see that the Benicar did make me dizzy, when coming up from a bent over position, or just standing from a lower position, too fast.  I have no idea if that was a direct affect or some secondary affect.  It was certainly connected with the taking of Benicar.

Hoping that all of these numbers help in some way!!!

Dark Vader...aka, George

tgritton
inactive member
 

Joined: Sun Oct 9th, 2005
Location: Northern Calif., California USA
Posts: 114
Status:  Offline
Have not followed my BP much as there is not much correlation between symptoms and BP. Only trend I notice is that now can get a BP immediately after standing where one year ago that was not always possible. Including some historical pre-MP data for context.

Date Benicar(mg) BP Pulse Position Notes

8/17/51 - 118/65 ? nr Child.Hosp, r. arm
1/24/92 - 134/62 ? nr, Dr. Ka
3/10/92 - 150/81 ? nr Dr. Ka
3/30/92 - 142/78 ? nr Dr. Ka
5/21/92 - 126/74 ? nr Dr. Ka
6/4/92 - 106/64 100 irreg nr, pulse supine 72 Dr. De
7/14/92 - 140/62 ? nr Dr. De
2/10/04 - 120/70 80 nr Mayo
2/24/04 - 118/80 72 nr Mayo r. arm
2/24/04 - 144/82 49 nr Mayo echo report
10/13/05 - 90/68 ? nr Dr. Sa, l. arm

10/21/05 ->Started Marshall Protocol
11/16/05 20 q2h 80/45 60 nr *2
11/18/05 20 q2h 80/52 57 reclining *2
3/16/06 20 q6h 78/63 69 sitting after up *2
3/17/06 20 q6h 64/51 86 sitting *2
3/17/06 20 q6h *error on standing from sitting *2
3/19/06 20 q6h 97/59 62 sitting after up *2
3/20/06 20 q6h 85/58 65 reclining in bed *2
3/21/06 20 q6h 87/60 83 sitting *2
3/21/06 20 q6h 71/61 100 standing *2
3/22/06 20 q6h 87/60 63 sitting *2
3/30/06 40 q4h 91/50 90 nr *2
3/31/06 40 q4h 62/47 91 sitting after reclining *2
6/12/06 40 q6h 78/51 ? reclining *2
6/13/06 40 q4h 60/49 ? sitting after up *2
8/17/06 40 q4h 70/50 ? nr *2
3/22/07 40 q6h 101/57 ? sitting *2
3/22/07 40 q6h 83/46 ? on standing from sitting *2

Present (Mar. 2007) MP status = modified phase 2 alt, 3 abx combo, 3 weeks in

*2 = Omron (model HEM 712C), left arm, self administered
nr = posture not recorded, but probably sitting
*error = indicated error on 1st try, could not remain standing for another try

Last edited on Thu Mar 29th, 2007 16:37 by tgritton

Carole
Support Team


Joined: Mon Jul 19th, 2004
Location: Florida USA
Posts: 742
Status:  Offline
Today's DXA scan definitely reveals that the MP is working toward suppressing my bone resorption!  :D

I will send the complete report as promised, but in the meantime I'm celebrating another obvious milestone with the MP!  ;)

The T scores are as follows:

                    Hip                 Spine
9/2003           -0.3               -1.7
3/2005           -0.9               -2.6
3/2007           -1.2               -2.5  

The blood pressure readings are from clinic visits (not counting higher hospital or lower home readings) :

Pre-MP--2000  120/84, 126/70, 130/80;  Pre-MP--2001  150/90, 126/74, 114/70, 140/84;  Pre-MP--2002  150/90, 144/92;  Pre-MP--2003  124/80, 120/80, 126/80, 132/90, 132/90;  Pre-MP--2003  150/96, 130/100

Benicar only--2004  128/82, 132/90, 142/90; Phase 1--2004  112/74, 112/74, 130/70, 122/72, 122/78, 108/78; Phase 2--2004  120/70, 117/72, 124/82

Benicar only--2004  112/80; Phase 1 again--2004  124/88, 124/80, 112/78

Phase 2--2005  140/90, 116/70, 120/68, 108/72, 122/80, 124/86, 102/80, 100/70, 100/70, 144/92, 110/84, 118/80;  Phase 3--2005 128/86

Phase 3--2006  126/88, 128/86, 132/82, 112/78, 138/90, 112/76, 110/70;  Next Phase 3 combo--2006  110/70, 118/76, 102/68, 130/82, 110/72, 128/88

Next Phase 3 combo--2007  124/84, 118/82, 102/70, 112/78

Words do not describe my elation!  Thank you so very much, MP and the research team! . . . Carole  :D

sunflower
inactive member


Joined: Sun Jul 24th, 2005
Location: Yuba City, California USA
Posts: 393
Status:  Offline
hi joyce,

sorry this is tardy, but my computer was on the blink since yesterday:X.  let's just say that i probably averaged 8 oz of cheese per week and a pint of ice cream per week....it's so hard to remember..........thanks...........sun

LeAnne
...


Joined: Wed Apr 20th, 2005
Location: Augusta, Georgia USA
Posts: 815
Status:  Offline
My blood pressure before starting Benicar was 119/ 78. When first starting Benicar on July 17, 2005, my blood pressure became as low as 89/56, without adverse reactions or problems. I am now 18 months into the protocol and take Benicar at 40mg every 6 hours. My blood pressure March 26th, 2007, was 109/73. My neurologist no longer has an apprehension of giving my the Benicar at the needed dosage of 40mg/6 hrs and has agreed to treat my neurosarcoidosis with the Marshall Protocol. I was previously having to travel 2 and 1/2 hours away to a doctor who would prescribe the Benicar. He was in internal medicine and specialized in hypertension.

LeAnne

Last edited on Fri Mar 30th, 2007 19:01 by LeAnne

LH1953
Member*


Joined: Fri Aug 5th, 2005
Location: Wellington, Florida USA
Posts: 1185
Status:  Offline
Glad you bumped, as I do not get to read much and came across this tonight.

My BP before the MP was 120/80.  Aug 2005 strated MP, BP 90/70.  This has stayed pretty much the same for the past 1 1/2 years. At the beginning of the MP was always in bed, weak, tired, dizzy.  Now, same BP and I can do dishes, laundry, mop floor, cook, and shop. Have to rest when active, but am able to do things where I could not before.  Hope this helps.

My scan was done on 11/9/04   pre MP   Supplement was to neutral acid in urine for IC has calcium 21% was taking 2 tabs a day. Not much dairy intake due to milk allergy as this exacerbated my Asthma.  Doc wanted me to start Fosamax, but I said no due to the other 12 meds I was already taking.  Test showed osteopenia/porosis I was told. Was so ill back then with much brain fog, I really did not care. 

I am going to the Docs on Tue. and can get RX to have another test done this week.  Will this be enough time for your needs?  If it isn't, then I will not repeat it this week.  Please let me know.

Region: L1-L4  BMD g/cm was 0.954

The Ancillary Femur Region:

Neck   BMC (grams)   3.73        Area (cm) 4.42
Wards                     1.48                      2.17
Troch                      7.27                    11.53
Shaft                     12.86                    13.38
Total                      23.87                    29.33
The Neck Region:
Neck   BMD g/cm       0.845
Wards                     0.680
Troch                      0.631
Shaft                      0.961
Total                      0.814           Ancillary Spine Results:
Region  BMD g/cm -    BMC(grams) Area(cm) Width(cm) Height(cm) BMC/W(g/cm
L1                0.881 -         8.41         9.54         3.31         2.88        2.54
L2                0.987 -        10.74        10.88         3.49        3.12        3.08
L3                0.961 -         13.10        13.63         3.79        3.60        3.46
L4                0.969 -          14.53        14.99         4.31        3.48       3.37
L1-L2           0.937 -           19.14        20.42          3.40       6.00       5.62
L1-L3           0.947 -           32.24         34.05         3.55        9.60      9.09
L1-L4           0.954 -            46.77         49.04         3.75       13.08     12.47
L2-L3           0.972 -            23.83          24.51        3.65         6.72       6.53
L2-L4            0.971 -           38.36          39.50         3.87        10.20      9.91
L3-L4           0.965-             27.63         28.62         4.04         7.08       6.83
AP Spine   L1-L4   BMD(1) (g/cm2) :    0.954
Femur     Neck                                 0.845

GeorgeinRollaMO
inactive member


Joined: Mon Aug 9th, 2004
Location: Rolla, Missouri USA
Posts: 538
Status:  Offline
Trevor,

I forgot to mention that the last of my DEXA tests was performed on September 16, 2004, just as I was starting the MP protocol.  It will not show what I think you might want, before and after.   I am wondering that myself.  I am hoping to hear any day from the third candiate for assisting me.  I will try to get that done a.s.p.

Dark Vader...aka, George

lionel forbes
member


Joined: Sun Feb 26th, 2006
Location: Canberra, Australia
Posts: 337
Status:  Offline
hi trevor, future nobel prize winner!:dude::dude::dude::) .    soon after commencing mp i had low bp spells, and dr. said bp low,but it returned to lower normal figs and is still lower normal .i dont know the figs. never had bone scans,calcium path has always been upper normal. i salute you, the best scientist in the world.

vda51
member


Joined: Mon Dec 27th, 2004
Location: Perth, Australia
Posts: 621
Status:  Offline
Trevor

My blood pressure dropped below 80 on many occasions in the early stages of the protocol,it has increased more towards the 100/110 leval now

As for the bone density i have no records ,but when i fractured my knee approx 4 years ago when falling from a horse the surgeon commented that he would have expected this extent of damage from someone faling from a 5 story building not a horse,i presume this meant my bones were not in good shape pre MP  

beverly
inactive member
 

Joined: Sun Sep 25th, 2005
Location: Graham, North Carolina USA
Posts: 83
Status:  Offline
Hi Trevor,

Don't know if this will help. Pre MP, I was having high BP readings (190's over 90's). Started MP last July. Since then, still having high BP even with Benicar 40mg every six hours. Have had to increase my BP meds a few times, even up to last week. Readings for me now are typically high 150's over high 70-80's. Still working with my doc to get it to go down a little more.

Thanks to you and the other staff for your dedication to solving this disease.

Beverly

Moxie
member


Joined: Thu Mar 3rd, 2005
Location: Brisbane, Australia
Posts: 201
Status:  Offline
BMD 2 regions DEXA

Scan Type Region Measured Age BMD T-score Z-score

AP Spine L2-L4 31.10.03 57.2 1.071gc/m2 -1.1 -.05
AP Spine L2-L4 15.12.06 60.3 1.059g/cm2 -1.2 -.04

Rt femur Total 31.10.03 57.2 0.896g/cm2 -0.9 -0.4
Rt femur Total 15.12.06 60.3 0.857g/cm2 -1.2 -0.6

Left femur Total 31.10.03 57.2 0.893g/cm2 -0.9 -0.4
Left femur Total 15.12.06 60.3 0.873g/cm2 -1.1 -0.5

ASSESSMENT
The right femur total BMD is in osteopenic range. Fracture risk is low - Relative risk is about 2
The left femur total BMD is in osteopenic range. Fracture risk is low. Relative risk about 2
The AP Spine L2-L4 BMD is in osteopenic range. The fracture risk is low. Relative risk is about 2
COMMENT
No significant change since the previous study.

Started MP March 2005 (2nd anniversary!) First BMD I had been on HIGH Vitamin D food intake e.g. cod liver oil, fish, dairy, seaweed, liver.
Since being on MP, limited intake of Vitamin D foods - no dairy at all except for half and half milk in cups of tea. So less than 500mls per week.

Calcium foods include some almonds occasionally, Asian green vegies about once a week, some chicken, sometimes some brown rice that's it.....


BP prior and early MP was usually about 70/50. Lately e.g. past 4/12, about 100/75-80.

Moxie

Last edited on Sat Mar 31st, 2007 03:57 by Moxie

LH1953
Member*


Joined: Fri Aug 5th, 2005
Location: Wellington, Florida USA
Posts: 1185
Status:  Offline
Forgot to ask in pervious post:  Can I fax or mail copy of the bone scan I have.  I am sure it is much easier to understand, then what I posted.  I am going to contact my pharmacy to ask about the Beni.  If they have no info, will ask them to make contact and get written response.  I did not mention the supplement I take is PH Control, by PHsciences.  This is a mineral complex. It states it has magnesium <1% DV, potassium 1% DV and alka- plex 1,000mg.

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
Moxie,

Glad your scan looked alright, but I just wanted to mention that it is recommended to try to get near the RDA of calcium when on the MP for several reasons-- see

**Don't I need to take a calcium supp. to prevent osteoporosis...

Joyce Waterhouse

phyllis
inactive member


Joined: Fri Jan 19th, 2007
Location: New Palestine, Indiana USA
Posts: 141
Status:  Offline
I do beleive that my doctor has a letter from Sankyo stating what you need. I will call her tomorrow and see if I can get that for you. If so, I will send it to you or I can fax it either way. Phyllis:)

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Phyllis,
That is excellent. Please FAX it to us, to 877-805-9941.

kathleen
inactive member
 

Joined: Tue Jul 13th, 2004
Location: New York, New York USA
Posts: 352
Status:  Offline
Hi, I have DEXA scans and can send or fax the actual test results if you need them, no problem

Feb 27, 2002, compared with Nov 200 - getting worse
lumbar spine 1.177 decreased 2%
left femoral neck 0.791 down from 0.809
proximal left femor 0.776 down 4%

during that time I had taken calcium citrate and D

April 18, 2006
lumbar spine 1.170 increased 1.4% (not significant)
left hip 0.862 increased 11.1% (significant)

I began the MP and so stopped taking D and calcium in Sept of 2004, so about 1 1/2 years before this exam. I was eating alot of yogurt - maybe 2 cups per day but no other dairy or supplements.

Pretty great for my bones, plus convinced my doctor to continue to prescibe the MP.

Thank you as usual, Kathleen

Oops. my BP contiues to often be very low, and also not to relate to how fainty I am - sometimes I feel worse when it's higher, better when it's lower. Go figure. Since it hasn't seemed to relate to anythig I could do anything about I sort of forgot to keep checking. I can start to keep a record if it would be helpful.

Last edited on Sun Apr 1st, 2007 19:50 by kathleen

Ralph
Member


Joined: Tue Dec 7th, 2004
Location: Sydney, Australia
Posts: 432
Status:  Offline
Trevor my results,

After diagnosed with Sarc in 2004. I had first DEXA In January 2005 results..

LUMBAR SPINE
The spinal BMD ( L2-L4 ) of 1.45gm/cm
FEMUR
The Femoral Neck BMD OF 1.11gm/cm

Commenced MP 2/4/06 Next DEXA test 30/10/06
LUMBAR SPINE
The spinal BMD ( L2-L4 ) OF 1.325gm/cm
FEMUR
The Femoral Neck BMD OF 1.122gm/cm

Also, I have approx 10-15 raw almonds per day. I have at least 1 serving of cheese at least every second day with an additional yogurt serve at least 2 or 3 times a week. My cheeses vary from chedder, parmesan,ricotta,bocconcini.

As for my blood pressure. Coming into the MP relatively normal ranges 120/80

After starting MP starting going south and as low as 89/59. It now has come up to be 110-115/ 70-80. It has also recently got to 120/80.

Hope I have got everything. Gotta Run.

Regards,

Ralph 

Reenie
member
 

Joined: Tue Jul 20th, 2004
Location: Phoenix, Arizona USA
Posts: 3369
Status:  Offline
My bp has been as low as 90/58 pre-MP and highest about 110/70.  Since the MP, my latest BP readings on the same day about two weeks ago were 74/44 (give or take one pt, dont recall exactly) at one Dr appt and later the same day was (approx) 110/70.   

DEXA:

Will scan and email the interpretation results and comparisons from 2003 - 2006.

Lynney
inactive member
 

Joined: Sun Aug 20th, 2006
Location: Augusta, Georgia USA
Posts: 90
Status:  Offline
Hope I'm not to late to contribute, I've been OOT w/o computer access.  I've had 2 DXA scans in '01(I have copy) and '03, I think, both well before start of MP.  Tried today w/2 of my Drs to get 2nd report with no success.  Here in Augusta everything stops during Masters week, or slows to a snails pace.  However I can tell you at about the same time as the scans, I was tested by a Naturalist who said I didn't need extra calcium, in fact, it was harmful, so I didn't take any and the 2nd scan remained essentially the same.  My Gyn said keep on doing whatever I was doing- that being no supplements, only consumed plenty of yogurt, milk, ice cream, cheeses on a daily basis.  Interestingly, prior to the time of the scans, I was a fanatic and took a myriad of supplements to include Viactiv w/Vit D & K, Wal-Mart Calcium, & Oscal W/D about 1500mg/day.  I saw My Orthopedist in '05 for a flare up my DegenDiscDis  who did some Xrays and said I was showing decreased calcium in spine & should be taking Oscal w/D.  I took it for a short time & stopped.  In the meantime, I was suffering w/GERD, taking lots of TUMs, Prilosec daily, Osteo BiFlex and continued that until started MP on 10/31/06.  I have not had another Dxa but believe the next one will be improved.  I still have about 4oz. Whole Organic Milk Unfortified q.AM w/oatmeal, small amt.- 1oz lowfat cheese several x/wk and my most recent 25D was 10.  Bp High , now averages 123/71, Beni q6hrs.  Blessings, Lynne

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Lynne,
No you are not too late, we will be collecting data for about another week (while TPTB are on Easter vacation:))

lantotibet
inactive member


Joined: Tue Jun 7th, 2005
Location: Syracuse, New York USA
Posts: 46
Status:  Offline
Trevor--

  I'm going to the gynocologist tomorrow (4/4); this is where I have had all bone density work done for the past number of years; I will try to log information re: bone density info. on 4/4 or 4/5.  No calcium/magnesiusm/potassium supplements of any kind.

            lantotibet  (Chris)

LH1953
Member*


Joined: Fri Aug 5th, 2005
Location: Wellington, Florida USA
Posts: 1185
Status:  Offline
Hi All, Just had my bone density test done today, 4/3 will get results tomorrow.  Take Care,   Lori

Robertrr
inactive member


Joined: Wed Jul 13th, 2005
Location: Austin, Texas USA
Posts: 385
Status:  Offline
I haven't had bone density tests done. My blood pressure pre-mp was about 120 over 70. After starting MP it teetered around 100 over 65 or so (sometime under 100). I had a bit of dizziness early on (when getting up,etc.) but that changed pretty quickly. After several months on MP my blood pressure has been about 105-110 over 70-75.

Trevor, God Speed!

Robert

Foundation Staff
.


Joined: Fri Jul 9th, 2004
Location:  
Posts: 17204
Status:  Offline
FYI...my famously low (75/45) asymptomatic blood pressure is now 90/70.....seems like hypertension to me. ;):D

madwolf
Health Professional


Joined: Sat Jul 24th, 2004
Location: Deer Park, Washington USA
Posts: 350
Status:  Offline
My BP runs 140-150 over 80 -90 without Benicar 40mg qid.

With Benicar 40mg qid my BP runs 125/80 +/- 4/4.

The absolute lowest reading I've had since starting Benicar 2.5 years ago was 122/72.

I've talked to the Sankyo reps on several occasions and never have they told me of any problems associated with my dose.

Last edited on Thu Apr 5th, 2007 12:22 by madwolf

shegeek
inactive member


Joined: Wed Jan 19th, 2005
Location: San Jose, California USA
Posts: 89
Status:  Offline
I received the printouts from my doctor, and I am sorry, the results of my recent DEXA are not good.

Feb 9 2005: (41 yrs old)
AP Spine: BMD 1.021g/cm2; T-Score -1.4; Z-score -1.5
Right Femur: BMD 0.864g/cm2; T-Score -1.2; Z-score -1.0

March 02,2007: (43 yrs old)
AP Spine: BMD 1.017g/cm2; T-Score -1.4; Z-score -1.8
Right Femur: BMD 0.823g/cm2; T-Score -1.5; Z-score -1.5

My left femur can't be measured because I have an artificial hip joint.

At the time of the first scan I had stopped all supplements in anticipation of the protocol, but up until October I had been taking one serving of Spiru-tein (400 IU D, 300 mg calcium, 80mg magnesium, 200mg phosphorus) a day, made with one cup of fortified milk. At the same time I was taking 500 mg of calcium carbonate (store brand generic) and an unremembered amount of magnesium per day, drinking/eating about three more servings of fortified full fat goat milk/yogurt per day, and eating salmon, cooked greens and cheese. I consumed a lot of liquid milk because I could get it down with my IBS. I continued taking the calcium until it ran out, about the same time as the first scan was done.

Presently, I average probably about 3/4 serving of unfortified dairy per day divided among liquid milk, yogurt and cheese, and about 2-3 sevings of cooked greens per week.

My BP was borderline high before beginning the MP and is now stable in the 100-110/60-70 range. My Benicar just got approved for 4 x 40mg a day for a year through the Caremark mail order pharmacy, no letter from Sankyo or any other problems.

Hope this helps in some way.

shegeek

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
No need to be sorry, those data look stable enough, considering where you started. It is the inflammatory disease process that causes the osteopenia, and until you get the pathogen load down to healthy levels you are unlikely to see much improvement in skeletal parameters. So a relatively stable environment is fine :)

Recent studies have shown that as long as the plasma phosphatemia and the calcemia are kept in 'normal' ranges, supplementation beyond that will have no effect on bone matrix.

Last edited on Thu Apr 5th, 2007 17:07 by Prof Trevor Marshall

LH1953
Member*


Joined: Fri Aug 5th, 2005
Location: Wellington, Florida USA
Posts: 1185
Status:  Offline
Hi All,  I will fax original report as well as recent results today.  My recent bone density test (DEXA) was not given to me in detail the way my first one was listed above.  I am working on trying to get this detailed info.  Here is what I do have:

AP Spine:     2004    -1.9              2007    -2.2

Femur:                   -1.1                         -1.6

AP Spine L1-L4     BMD(1)(g/cm2)    0.916       Age matched (3) Z Score: -1.0

                                                                Young Adult (2) T Score:  -2.2

Femur Neck         BMD                    0.789          Z Score: -0.5

                                                                   T Score: -1.6

According to the World Health Organization (WHO) a T-Score of Negative 1.0  to Negative 2.4 is an indication of Osteopenia.  A T-Score of Negative 2.5 or lower is an indication of Osterporosis.

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
Shegeek,

Though inflammation is very influential, as Trevor says, it is still recommended to get near the RDA of calcium, see:

Don't I need to take a calcium supplement to prevent osteoporosis...

If you want to read what has worked for me, see an excerpt of a post of my own at:

***Should I be concerned about osteoporosis

Joyce Waterhouse

I agree - Trevor

shegeek
inactive member


Joined: Wed Jan 19th, 2005
Location: San Jose, California USA
Posts: 89
Status:  Offline
Thanks, concerns about getting too much D was the reason I'd cut down on dairy so much. I'll look into those supplements--I can probably get them locally.

Moderator's note: See Dairy Products

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Shegeek,
At low levels, calcium directly controls PTH. PTH in turn increases the expression of 1,25-D via a PKA and P300/CBP pathway. Please keep that Calcium intake up to around 1500mg/day total from all sources:)

DNStog
member


Joined: Mon Aug 16th, 2004
Location: Sandy Springs, Georgia USA
Posts: 1077
Status:  Offline
I just received all of my BP readings from my MP doctor's office which follows:

(Pre-Benicar) Dec. 04  130/70       
(Benicar only) Jan 05  124/78   
(Benicar + Mino) Feb 05 120/70     
Apr 05 120/80
June 05   120/80                         
Aug 05  120/80
Dec. 05  128/86                           
Feb 06    120/80
May 06  120/80                           
(BC diagnosis) Oct.06  130/70            
(Valium)Nov. 06  120/70
(Lexapro & Valium) Jan. 07   104/68    
(Lexapro only) Feb. 07  106/60
(Lexapro only) Mar. 3, 07    108/64

Regards...Donna

Last edited on Tue Apr 10th, 2007 13:00 by

mcalister
health professional
 

Joined: Sun Feb 13th, 2005
Location: Adelaide, Australia
Posts: 54
Status:  Offline
Trevor

I have had 2 dexa scans, one a year ago and the other a month ago.  I have the actual reports if you want them.  If you send your fax number to my home email, I will fax them to you if they are of any use.

Mary

Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
I had a bone density scan about 6 months before I started the MP, and it showed some loss. I tried to schedule another at the same hospital, but the first appointment is June 15. How important is it to have it done at the same place?

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Chris, June 15 will be in plenty of time. The FDA doesn't move very quickly :):)
see FAQ What does my bone density test mean? 

Mary, I will send you my FAX number.

lucindarose
Health Professional


Joined: Sun Mar 26th, 2006
Location: Nottingham, United Kingdom
Posts: 275
Status:  Offline
Hi Trevor

I now have my results for my DEXA scan performed in March 2006.  Results as follows:-

Left femur (neck) BMD 1.171g/cm2 (young adult) 1.6 (age matched) 1.7

Whole body (total) BMD 1.207g/cm2 (young adult) 1.0 (age matched) 1.0

The software is unable to distinguish between bone and soft tissue at the lumbar spine re calcification of both kidneys.  Known hypercalcaemia.  The measured bone mineral density is within normal limits (T-score above 1 SD below mean young adult bone mass).

I had been on Prednisolone since October 2005 and at the time of the scan was on 10mg/day.  I was also 4 months post partum.

Hope this helps.

Anna :)

Debbie D.
member
 

Joined: Sun Sep 26th, 2004
Location: Cleveland, Ohio USA
Posts: 293
Status:  Offline
Just saw this and wanted to add my blood pressure has always been around 110/60. I have a high resting pulse, around 80-105, but low blood pressure. While on protocol with a bad herx I have had 67/48, given oxygen and when I arrived at the hospital 130/80 and later 110/70..  I have also had issues with blood pressure 170/110, went to hospital and blood pressure returned to normal after given oxygen. Later Dr. gave me Ativan so when this happens, I take Benicar and Ativan and usually returns to normal. So basically, I have had highs and lows on the MP but I believe this is related to herx at the time.

I have disk degenerative disease. I do not know if this has anything to do with bone density.

I found this online in a Benicar forum, is this the problem?" 

The FDA recently issued a "Warning Letter" to the company that manufactures and sells Benica (Sankyo Pharma) advising them that the sales materials used by the company are false and misleading. Those materials according to the FDA contain unsubstantiated claims of effectiveness and omit and minimize risks associated with the drug."

Since I have been on protocol I have had marked improvement with my health. The Benicar makes me feel better and I can feel a difference when taking it. I hope this does not cause problems with the Marshall Protocol which many of us believe has been our cure. :?

Morris W. Milnes
...


Joined: Mon Nov 29th, 2004
Location: Bourbonnais, Illinois USA
Posts: 1197
Status:  Offline
I was at my GP's today and picked up blood pressure information since Before and since I have been on the MP and Benicar.

Before Benicar

1/17/05   138/88
1/13/06    122/80

After Benicar was started

1/25/06   80/68
3/6/06    82/68
5/3/06    78/58
7/5/06    72/58
9/6/06    80/50
11/8/06    80/44
1/10/07    80/58
4/18/07     80/60

Hope this helps our cause.

Morris

Debbie D.
member
 

Joined: Sun Sep 26th, 2004
Location: Cleveland, Ohio USA
Posts: 293
Status:  Offline
I checked with Dr. & pharmacy and they have not been given any info re: Benicar.

Morris W. Milnes
...


Joined: Mon Nov 29th, 2004
Location: Bourbonnais, Illinois USA
Posts: 1197
Status:  Offline
I just reviewed your original information request Dr. Marshall and I realize my data wasn't the type you requested.  Sorry about that.

Morris

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Everything helps us Morris, thanks for the BP data.

debbie y
inactive member
 

Joined: Wed Mar 16th, 2005
Location: Huntington, West Virginia USA
Posts: 195
Status:  Offline
I am in ph3.  Have just had bone dexa done.  Several dexa scans done in past. 

From 7/19/05 pre MP:  My report states "This lady has had 2 previous  bone density scans.  Since the initial scan of 12/20/99, there has been a 9.2% decrease in bone density of the spine.  T-value of L femoral neck bone is -2.0.  Since bone density of 12/20/99, there has been a 7.4% decrease in bone density of L femoral neck."

I had been on Fosamax but it was d/c'd when I was put on steroids for sarcoid in Mar. 2004.  I was on steroids for 18 months.  During that time and after steroids, I was on nothing for bones.  No supplements OTC or otherwise.  I started the MP in Feb. 2006.  This is the first DEXA since then.

Report from 4/12/97 post MP 1 yr, 2 months:  Lumbar spine, average T-score -1.8, bone mineralization the least at L1, L2 and L4, T-score -1.9.  This is increase of 1% since July 2005 and an overall decrease of 8.2% from baseline study of 12/19/1999.  Within hips, average T-score -1.6, bone mineralization the least at Ward's triangle L hip, T-score -3.2.  Right femoral neck is -2.6.  Since 2005, bone mineral density within the L hip has improved 3.5%.  Osteopenia of both lumbar spine and L femoral neck.  Both the lumbar spine and L femoral neck have decreased since the previous DEXA.

I do not take anything for calcium or vit d.  I eat foods with calcium but not any above average amount.  I drink milk with NO vit D., about 2x a week. My calcium levels have remained normal.

BP has always been normal.  90/50 or 60.  My BP has not changed in ANY way since being on Benicar, even when I started it.  I take Benicar 40mg q8hrs.  Last OV BP was 100/60.

I hope this information will be useful.

debbie y:)

MrsKeeper
inactive member
 

Joined: Mon May 16th, 2005
Location: USA
Posts: 214
Status:  Offline
I finally got in for my appointment today and I have the bone density test results and BP history. I will PM the density scan to Dr. Marshall.

In a nutshell:

At the L2-L1 level score is 1.6
Left femoral neck is 1.8
Right femoral neck is 1.9
Within normal range indicating negligible fracture risk.

I had supplemented with calcium, magnesium, and vitamin D and taken flax and fish oil products in the attempt to gain health for at least a year or more prior to this test. :?

My blood pressure history:

BP before MP;
8/04=115/80 (average/normal)

Began Benicar in 10/04;
6/05=110/75
9/05=120/70
2/06=100/60
1/07=110/70
4/07=100/60

benk
inactive member


Joined: Thu Dec 21st, 2006
Location: San Clemente, USA
Posts: 75
Status:  Offline
I have had no bone tests. Hope my BP data helps.

Well before starting the MP I was taking mainly verelan and propranolol for high BP. During November 8-11, 2006, I measured my BP (4-6 times each day from early morning to late evening, at least 2 hours between measurements, grand total of 20 measurements). Mean systolic = 140.2 (min 125, max 151 mmHg) and mean diastolic = 83.3 (min 80, max 104). Then I quit taking the drugs and my systolic went to near 150 and sometimes higher. (I did not care because the side effects of the drugs were so bad.)

I started taking Benicar on December 26, 2006. I expected a herx. Instead, by the second day, I experienced an intense feeling of physical well-being and contentment! (It still lasts, but not with such intensity)

After a month on 4x40 mg/day of Benicar (and Mino) I noticed a small decrease in BP. 

From March 22 through April 18, 2007 (end of phase 2) I took 3-5 BP measurements each day (a total of more than  75 measurements). The results are:

Mean systolic =127 (min 103, max 142)

Mean diastolic = 81 (min 68, max 92)

[Mean pulse = 71 (min 61, max 93 beats per minute)]

PS. I am very happy with my Microlife automatic BP monitor (about $70 at Costco). It downloads data to a PC, and facilitates data analysis.

Moderator's note: It is not necessary to monitor your blood pressure unless your doctor has advised you to do so.

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
I have only had one DEXA scan, about a year into the MP and my bone density did not show any osteoporosis.  I have not had any other scans, so have nothing to compare it with.  If anyone wants me to give more details of my one report, you can let me know.  I have been taking at least 1000 mg chelated calcium (and also the supplements listed here: Should I be concerned about osteoporosis


Blood Pressure:
Some readings prior to MP: 
The few days prior to beginning the MP:  6 readings ranged between 98/60 and 107/67 
 
First 10 days on 160 mg Benicar (late October, 2004):
Bp between 95/60 and 98/61, with a few higher and lower values, from 93/60 and 107/68.  Overall, very little change compared to pre MP.
 
More recently, on different levels of Benicar:
 
12/31/07 when on 100 mg Benicar:  99/62
2/11/07 when on 200 mg Benicar:  93/60, 91/62
2/14/07 when on no Benicar:  97/62
 
I have not noticed any symptoms that correlate with my blood pressure levels.
 
Joyce Waterhouse 
PS  Let me know if you would rather have the individual values instead of the ranges.

Last edited on Mon Apr 30th, 2007 09:58 by jcwat101

laura1814
Support Team


Joined: Sun May 13th, 2007
Location: Southeast Texas, USA
Posts: 720
Status:  Offline
Is there any followup? Were you successful in collecting the data you needed for the FDA? Any expectation of how long before the FDA makes a decision?

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Yes, thank you, We had a very good meeting with the FDA in April.
There will be announcements coming from time to time. Please keep an eye out for them.
 

laura1814
Support Team


Joined: Sun May 13th, 2007
Location: Southeast Texas, USA
Posts: 720
Status:  Offline
Thanks for your quick response! I'm glad to hear the meeting went well.

Perhaps this would be a good time to request a general news update? There hasn't been anything posted in the Announcements forum since mid-April, and no new topics at all since November. I gleaned from reading in other forums that there have been at least two conferences so far this year.

(I submitted a 2" binder of MP info to my doctor yesterday, and have a consultation with him July 2nd. Hope to be starting the MP shortly after that!)

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Laura,
The medical world does not understand the transparency that we have practiced at this site. So we need to tread a delicate line between keeping folk informed, and embarrasing our research partners. Please honor our judgement of what you need to know, and when you need to know it:)
 

laura1814
Support Team


Joined: Sun May 13th, 2007
Location: Southeast Texas, USA
Posts: 720
Status:  Offline
I was not impugning your judgment. Posting summaries of events takes time, and I know you're busy. I was just asking. I'm sorry if I offended you.

Last edited on Thu Jun 7th, 2007 19:44 by laura1814

Frans
Member*


Joined: Sun Feb 20th, 2005
Location: Near Rotterdam, Netherlands
Posts: 1034
Status:  Offline
Trevor, I think we all respect your judgement after you have led us all this far.

On the other hand I for one am hungering for more and more info. Especially to fight my own private little battle against all the non-believers, but also, more important than that, to get people aboard the MP, to get the message out.

Every piece info you have provided, be it the info-laden presentations or just remarks in some threads, has aided me in understanding things better and better, making it easier for me to explain it to others in return.

I think we are all very much interested in getting the message out and I think every one of your accomplishments helps to drive another nail into the coffin of these diseases.

However, I understand that there are politics at work we cannot even begin to fathom and I for one trust you to have the best overview and insight in what needs to be done and how it has to be done.

I also understand that this study site is absoletely unique in the world of medicine and paradigm changes just don't happen overnight.

Your insights have already brought health and hope back to people who had already given up, so we owe it to you to give you the credit that your decisions about what to tell us and when are well founded.

I know that you know very well what you are doing, but would like to know the same :D:D:D

Sincerely,

An eager, but patient Frans :)

Perezt
Member*


Joined: Tue Aug 23rd, 2005
Location: Mims, Florida USA
Posts: 17
Status:  Offline
Dual Energy X-ray Absorptiometry (DXA)s Bone Mineral Density (BMD) performed on HOLOGIC DISCOVEY:

Jan 16, 2007 -       Density               T-score        Z-score

L1-L4                   1.122 gm/cm2       0.3 SD         0.7 SD

Femoral Neck         0.854                  -0.9 SD       -0.1 SD

Forearm 1/3           0.830                   0.1 SD        0.6 SD

1.122 gm/cm2      

April 5, 2005          Density                T-score       Z-score

L1-L4                   1.112 gm/cm2        0.2 SD         0.6 SD

Femoral Neck         0.841                  -1.0 SD       -0.3 SD

Forearm 1/3          0.793                   -0.6 SD       -0.1 SD

History:  On Prednisone Jan - Nov. 2005

            On Fosamax and likely Vit. D with Ca during part of 2005

Began MP on 12/23/05

jasmine
Member


Joined: Thu May 3rd, 2007
Location: Michigan USA
Posts: 380
Status:  Offline
Hi Dr. Marshall,

I just started your protocol and hope this helps with your mission.

Bone Density:

Pre-MP, June 2003, age 49

Hip:  BMD= .781  T= -1.3         Spine:  BMD= .845   T= -1.8

Prescribed Fosamax and 1000 mg (daily) Citracal

June 2005

Hip:  BMD= .778  T= -1.3         Spine:  BMD= .898  T= -1.4

Taken off Fosamax June 2005 due to acid reflux
Prescribed 1000 mg Vit. D2  Aug. 2006-Dec 2007, changed to 800 mg. Vit. D3 Jan.2007-April 2007

Limit Vit. D beginning 5/2007, limit sunlight beginning 6/2007

Just had my follow-up bone density scan today, and will report results a.s.a.p.

BP:

Pre-MP  80-90/50-60
Started Benicar 6/8/07
6/9/07: 91/53, 6/10/07: 93/61, 9/11/07: 87/49

Respectfully submitted,
Jasmine

jasmine
Member


Joined: Thu May 3rd, 2007
Location: Michigan USA
Posts: 380
Status:  Offline
Hi Dr. Marshall,

I received my bone density results taken 6/11/07:

Hip      BMD: .862      Total: -.7
Spine   BMD: .908      Total: -1.3

It looks like I have improved in both areas, but still have osteopenia in my spine.

Respectfully submitted,
Jasmine

margaretdm
inactive guest
 

Joined: Fri Jun 22nd, 2007
Location: Santa Clarita, California USA
Posts: 76
Status:  Offline
My doctor and I had always suspected that my hypertensive crisis reactions were due to inflammatory disease. Prior to MP it ranged from a high of 212/135.  I'm ranging from 100/60 to 86/58 with no side effects at low pressure on Benicar 40 mg Q6-8hrs.

Last edited on Sun Jun 24th, 2007 12:25 by

Ames
Research Team


Joined: Tue Mar 8th, 2005
Location: New York, New York USA
Posts: 790
Status:  Offline
I wish I had insurance because I had pretty bad bone loss pre-MP. In another three months I will be able to get insurance again and look forward to re-testing my bone mass.

I do have two dexa scan results, a year apart, once my CFS had really kicked in badly. Interestingly, I spent most of that year on the beach in Acapulco. Worst decision of my life. For all that vitamin D I was getting from the sunlight, my bones got substantially worse in a very short period of time. If you'd like those results I can put them up.

My BP was super low pre-MP. I saw a CFS specialist (Dr. Lapp) who told me I had the lowest BP he had ever registered. He made me see a cardiologist that same day. I think maybe I was 30/50 or something along those line. I don't know if I have the records.

When I went to a a doc appointment a year into the MP my BP was 81/110. I nearly fainted..because it was so high and normal. I couldn't believe it. I can tell it still drops when the IP gets bad. When the BP symptoms are extra bad I always take EXTRA Benicar. My BP will go UP, and become more stable. If you'd like i can try taking some BP readings before and after a Benicar dose.

Amy

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
I don't know if this will be useful, because I did not have a bone density test done before or since, but this was done a year after being on the MP and it shows my BMD was fine.  I had been having some D supplementation before beginning the MP in September of 2004 (like around 800-1000 IU per day).  I had been and have continued to get about 1000-1300 mg per day of calcium from supplements (along with around 800 mg magnesium).

So, they came out pretty good, despite the fact that I had some risk factors (years of a lot of bed rest and some several years of amenorrhea).  But being premenopausal, of course, reduces the tendency to have osteoporosis.

Vertebral levels
L2-L4        Lumbar 1.583    T score  3.2 
Normal is above  -1
Total Hip  0.997   T score  0.0
Normal is above 0

Anyway, my 25D was only 11 ng/ml even before I began the MP, so it shows a low 25D wasn't a problem for me (my 1,25D was 64 pre MP).

Joyce Waterhouse

tgritton
inactive member
 

Joined: Sun Oct 9th, 2005
Location: Northern Calif., California USA
Posts: 114
Status:  Offline
I don't have any BMD results but do have urine N-telopeptide level, which is a marker for bone resorption.

3m preMP -> 41 nmole BCE/mmo Creatinine (range:11-103,no age range spec)
19m MP(5/17/07) -> 16 nmole BCE/mmo Creatinine (range:9-60,30-59years)

both Quest Labs

Aussie Barb
Member*


Joined: Wed Jul 21st, 2004
Location: Australia
Posts: 19588
Status:  Offline
Sydney Chris wrote:

Saw the Dr this morning.. confirmed my bone density reading was 5% above the population norm for my age after 2.5 years on a low Vit D diet !!

He was a bit surprised and delighted that the regime of small, regular doses of calcium rich foods each day has avoided any issues in this area.

That said he has had no bone density issues with his other long term MP'er to this point.

Best to all.

Chris
___________________
Chris: MP Mar 05. IgG deficiency, post viral syndrome. VitD ratio 2.8:1 (177/63), Votum Q6h, NoIR's, sunlight, diet. Ph 2 Nov05. Mod PhII Jan 06. Feb 06: 25OH 6.8ng/ml, 1.25D 18.8pg/ml. Ph 3 July 06. Sept 06: 25OH - <7.2ng/ml, Jan 07, 25OH - 11.2

Aussie Barb
Member*


Joined: Wed Jul 21st, 2004
Location: Australia
Posts: 19588
Status:  Offline
Kas wrote:

Anyhow, here is probably the best news I have received in a long time.

Today, I went for my bone density test, which was last done two years back and which showed stable osteopenia I had already been avoiding D foods and pretty much eliminating sunlight for over a year at that time. Usually the radiographers to not give out the results here, but I had a very amiable fellow and he could not believe that I was not taking any supplemental D, let alone avoiding food sources, when he blurted out in amazement that my spine is in the totally NORMAL range and my hip,although a little down ( normal for my age), is smack in the middle of the NORMAL range. No osteopenia whatsoever!!

To say I felt I was soaring, was an understatement!! Of course, my doctor will get the report in about a week and I will be able to give actual figures here.
___________________
Kas: Sarc Dx by splenectomy 03 Lung, lymph node, liver| Jul/06 Beni s-r 40mgQ6H| Mino July06| Avoid LightD 04| mino alone 6 mths| NoIRs| Mod Ph2 Oct06

Aussie Barb
Member*


Joined: Wed Jul 21st, 2004
Location: Australia
Posts: 19588
Status:  Offline
robyno wrote:
2 years, 5 days since Benicar start
Matt had a wonderful birthday with his friends.  Thanks to everyone for your birthday wishes. 

It was interesting to compare the photos I took this year with those I took last year, with the same group of friends.  Last year Matt was so much shorter, but this year he had caught up quite a bit and didn't look like the odd man out. 

Matt is coping well with school and keeping up with the work load.  Life is so very good!

That's our news for now. 

Best wishes to everyone, Robyn
__________________
Mum of Matt 14 yrs 40 kg, Rickettsia+Lyme sympt,paracetamol,Lactobac, Noirs Aug05, avoid light&D, Beni 13Sep05; 16Jun05:1,25D=22, 25D=27,12Sep05:1,25D=30,25D=21, 7Oct05:1,25D=27, 25D=24; 7Dec05:25D=12.4; 5Apr06:25D=10; 18Aug06:25D=8.8 Ph1:8Oc

Kas
member


Joined: Wed Dec 8th, 2004
Location: Markham, Ontario Canada
Posts: 1132
Status:  Offline
Here are is my bone density result of September 10. 2007:

Clinical History:  Perimenopausal woman. Previous BMD examination dated Sept 6, 2005. 

Direct comparison is no longer possible as we have changed from the Norland to the Lunar Bone Densiometer.

Findings:  BMD was assessed in the lumbar spine,  left total hip and left femoral neck using the DEXA/DXA technique on a Lunar Prodigy Advance Bone Densitometer.

Region: L1-L4  BMD(g/cm2)= 1.210   : total Hip =0.963

T-Score:                            0.2                  -0.3

Z- score:                            1.0                  0.3

 

Interpretation:   In the lumbar spine and left total hip, there is normal bone density and the 10- year fracture risk is low.

Using the imported data from the previous examination, there has been no significant change in the lumbar spine and an increase in bone density in the left femoral neck.

 

Hope this info is of help to you.

Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
Here is my history of bone scans.   It didn't look like good news to me or my doc, though I do see that the big jump was pre-MP.   I  suppose that the MP has retarded the osteoporosis process, but I have found nothing on how fast it goes without treatment.

3/8/2002 : Normal  

Left femoral neck   1.018 gm/cm2 -0.4 young adult +0.1 age-matched
Lumbar spine        1.133 gm/cm2 -0.7 young adult -0.7 age-matched

4/20/2004 : osteopenia (started MP in June or July)

Left femoral neck   0.914 gm/cm2 -1.2 young adult
Lumbar spine        1.099 gm/cm2 -1.0 young adult

6/15/2007 : osteopenia  (Different hospital from first 2)

Right femoral neck  0.777 gm/cm2 -2.3 young adult -1.6 age-matched
Left femoral neck   0.870 gm/cm2 -1.5 young adult -0.9 age-matched
Lumbar spine        1.058 gm/cm2 -1.3 young adult -1.3 age-matched

Foundation Staff
.


Joined: Fri Jul 9th, 2004
Location:  
Posts: 17204
Status:  Offline
It's important to calculate the rate of bone loss to see if that has diminished. If you're not losing bone mass as fast as before the MP, that is success.

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
Chris,

I wonder how much calcium you have been getting during the last 5 years (diet and supplements combined)?

Joyce Waterhouse

Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
Joyce,

I haven't ever counted it up.  Cheese is still part of our diet, though not as much as it used to be.   Broccoli and cauliflower are frequently on the menu.  There's usually a bowl of almonds around to snack on.  I keep a big jar of salted peanuts at work for snacking.

Other than the infrequent use of Tums, I have not used a supplement, though it might be time to start.

I am hoping that now that I'm becoming less sun-sensitive it might mean that there will be fewer times the D,1,25 is spiking and causing trouble. 

- Chris

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Chris,
Your thinking is exactly on target.
During the early phases of the MP it is unrealistic to expect that skeletal remodelling will change very much, as the immunopathology is still a major player in the body's homestasis. It is once the IP has started to drop back, as the photosensitivity recedes, as the 1,25-D stays in a lower range, that the skeleton begins to rebuild itself.
 

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
Chris,

From the sound of it, I don't think you are getting enough calcium, especially if you have cut back on cheese.  I would suggest adding it up and estimating your average intake and if you can't get the RDA from food, I think at least 1200 mg calcium (if not a bit more) should be what you aim for as the total from food and supplements.  Tums are O.K. but not the best absorbed, according to some.

Look at this link:

Don't I need to take a calcium supplement to prevent osteopo...

Joyce Waterhouse

PS  The RDA of calcium is 1200 mg for people over 50

Institute of Medicine -- RDAs for nutrients

Last edited on Thu Sep 27th, 2007 09:55 by jcwat101

Frans
Member*


Joined: Sun Feb 20th, 2005
Location: Near Rotterdam, Netherlands
Posts: 1034
Status:  Offline
Joyce, I have a question. Going from what we know, phosphorus is extremely important for bones health. Shouldn't we also look at phosphorus intake?

Sincerely, Frans

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
Frans,

The reason calcium is emphasized a lot more is that phosphorus is abundant in a wide range of foods, whereas calcium is not nearly so widely distributed.  Dairy products from cows even have a higher ratio of phosphorus to calcium than human milk. 

Also, as people's kidneys age there is a tendency to not excrete phosphorus as well.  So, older people are more prone to too much phosphorus than to too little (those with kidney disease are given substances to bind the extra phosphorus to reduce it).  When phosphorus is too high, it increases PTH, which helps drive calcium lower.  This is one of the causes of secondary hyperparathyroidism.

Typically, only people who are generally quite malnourished and/or have a serious malabsorption illness are deficient in their phosphorus intake. 

Joyce Waterhouse

scooker48
Member*
 

Joined: Mon Jan 3rd, 2005
Location: Sunnyvale, California USA
Posts: 1738
Status:  Offline
I had a DEXA scan done at the same facility in 2001 as baseline, repeat in 2004 and again in 2007.  The 2001 scan was done on a Lunar DPX-IQ, the 2004 was done on Lunar DPX-IQ, and the 2007 scan on a Lunar Prodigy.

Because these reports use "boilerplate" sentences, I will list the 2004 and 2007 phrases.

2004 Lumbar spine:  The bone density from L1-L4 averages 1.082 g/sqcm. 

2007 Lumbar spine:   Lumbar spine bone mineral density from L1-L4 averages 1.069 g/sq cm.

2004 Hip, left: Total hip bone density is 0.800 g/sqcm.  This is 1.7 standard deviations below the mean young adult peak bone mass. 

2007 Hip, left:  Femoral neck density is 0.780 g/sq.cm.This is 1.9 standard deviations below the mean young adult peak bone mass.

2004 Impression:  In the absence of treatment this is associated wih 5 times increased fracture risk compared with that of a similar person with a T score of 0.  Compared to 2001 there has been a 0.155 g/sq.cm decrease of bone mineral desnsity of the spine and a 0.91 g/sq.cm decrease at the hip.

2007 Impression:  In the absence of treatment this is associated with a 6 times increased fracture risk compared with that of a young adult.  Compared to 2001, there has been a 0.168 grams per square centimeter decrease of BMD in the spine, and a 0.109 grams per square centimeter decrease at the hip.

Between 2001 and 2004, I took calcium tablets with Vit D and exercised on weight bearing equipment 4-5 mornings per week.  I began MP 2/05.  I believe the rate of bone loss is slowing; ami I correct in this assumtion?

Copies of all DEXA available upon request.

Sherry

P.R.N.
.
 

Joined: Thu Dec 2nd, 2004
Location: USA
Posts: 2115
Status:  Offline
Sherry, I concur with your interpretation of your results. Your bone density decline is reduced the last three years when compared with the previous three years. The change in equipment at your testing facility may introduce some level of variability in results; but with the same manufacturer this may have been kept to a minimum.

best, P.B.

mcalister
health professional
 

Joined: Sun Feb 13th, 2005
Location: Adelaide, Australia
Posts: 54
Status:  Offline
Dear Trevor

I have had 2 dexa scans one 2 years into treatment and one 3 years into treatment.  I have faxed these results to you before so I guess you still have the record of these, if not just let me know.

On the blood pressure issues and Benicar.  My blood pressure was unrecordable when I first started Benicar and now it is usually between 90/50 - 100/60mmHg.

Hope this helps

Mary

Jigsawplus
inactive member
 

Joined: Sun Jul 22nd, 2007
Location: Melbourne, Australia
Posts: 3
Status:  Offline
I started MP1 with 4X40mg Benicar daily on 4/12/07. I have not proceeded beyond Phase 1 and am currently only on Benicar.
I had begun limiting vitamin D intake in June, 1906. At various dates my 25-hydroxyvitamin D levels in ng/ml have been: 6/15/06, 26; 10/20/06, 19; 4/30/07, 15; 7/19/07, 7 and 1/14/08, 10. The 2nd and 3rd values were deemed borderline deficient and the latter two, deficient. The 1,25-dihydroxyvitamin D levels for the first three dates were 50, 50 and 39 pg/ml, respectively.


Bone density measurements were:
Rt. Femoral Neck 0.771g/cm, T = -1.2, Z = +1.6
Lumbar Spine 0.904g/cm, T = -1.3, Z = +1.3 on 12/29/06, and now

Rt. Femoral Neck 0.791g/cm, T = -1.0, Z = +1.9
Lumbar Spine 0.940g/cm, T = -1.0, Z = +1.7 on 3/12/08.

Measurements were taken at the same clinic on both occasions. No calcium supplements were taken. Cheese was eaten at usual (for me) levels, say 100-150g (1/4lb) per week, and milk about 3/4liter (say 1 pint) per day
My results are contrary to the folk lore that bone density cannot be increased in old age and that high vitamin D intake is needed for its maintenance: but spot on for Marshall law.

Last edited on Mon Apr 7th, 2008 04:27 by Jigsawplus

Pundun
health professional


Joined: Sun Sep 17th, 2006
Location: Canberra, Australia
Posts: 193
Status:  Offline
I had my BONE DENSITY tests to show Dr:
There was a slight improvement from Feb last year – still not osteopenic & well ‘in the green’.

NB I have 2x metal hips so my results are from the backbone & wrist, which is not such a great indicator compared to the hip. Still – another bit of good news.

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
I just want to remind everyone that on the MP, it is recommended to generally try to get near the RDA of calcium from food if possible.  But if one does not get enough from food (usually dairy products as they are the main rich source), then one should take a calcium supplement without vitamin D to reach near the
RDA (1000-1200 mg) daily. 

It is important not to ingest more than 500 mg at a time, so divided dosages are needed.  Calcium is important not only for bone, but for good immune function.

Consult these FAQs for more information.

Do I need to take a calcium supplement...

***Should I be concerned about osteoporosis  (this link gives the supplement brands I use for calcium, magnesium and vitamin K since my diet is inadequate).

The only circumstances one would not try to get near the RDA is if one has been told by one doctor not to, for some reason, like recent hypercalcemia (high blood calcium levels).

Joyce Waterhouse

Last edited on Mon Apr 21st, 2008 23:28 by jcwat101

Aussie Barb
Member*


Joined: Wed Jul 21st, 2004
Location: Australia
Posts: 19588
Status:  Offline
MaBear
Member in Phase 3
wrote:
My dexa-scan was -2.5 in 2003, -3.27 in 2005,(after actonel, Vit D etc.; now in 2008 it is -3.1 after 2 years on MP.

Aussie Barb
Member*


Joined: Wed Jul 21st, 2004
Location: Australia
Posts: 19588
Status:  Offline
Lynney
Member in Phase 3
Bone Density Report: Dated 6/30/08 AP Spine, T-Score-0.1, Normal: Femoral Neck(Left) -2.6
Osteoporotic, increased .1 since 2004; Total Hip(Left) -1.9, also up .1. 

Bone Density Report Dated 12/04/01, AP Spine T 0.4, BMD 1.086 g/cm2; Left Hip T -1.9, BMD 0.708 g/cm2;

Dated 2/05/04, AP Spine T 0.4, BMD 1.094 g/cm2, Lt Hip T -1.7, BMD 0.734 g/cm2;  

Dated 6/30/08 AP Spine, T-Score--0.1, BMD 1.041 Normal, Total Hip(Left) T -1.9, BMD -1.9
 
Note: both my 2001 & '04 Scans were done @ another hospital than current report. I'm very happy with the results!
______________________
HTN Chronic Urethritis GERD DDD| Premarin Estrace Tylenol Flexeril| MP11/06 ModPh2 2/07 Ph2 2/16/08 Ph3 7/26/08; 4/07 12/07 2/08 5/08-25D7,7/31/08-5ng/mL| NoIRs Lowluxhome 1hr light /wk/w/cover KCream|

Sunbeam
inactive member
 

Joined: Wed Dec 13th, 2006
Location: Perth, Australia
Posts: 394
Status:  Offline
Bone Mineral Density

2006 CFS for about 6 years but pre-MP

AP Lumbar Spine 0.984 grams/cm2.  82% expected value of young adult.

Femoral Neck 0.691grams/cm2.    70% expected value of young adult.

T-score 2.4  

BP usually 115/80 slightly lower or higher.


2008 on MP almost 2 years.

Lumber Spine  0.806/cm2.  Says 80.1% of expected value of young adult. 
1.64SD T-score
Osteopenia

Femoral neck  0.6454/cm2.   68.6 of expected value of young adult.
2.43SD  T-score
Osteopenia.

BP usually about  94/65 p72

I hope this helps,

regards Lynn





Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Lynn,
Interpreting that data is a "half empty - half full" choice for your Doc to at this point :) These values are within the measurement error from each other. In other words, no change.

Which, for a cup-half-full person, would be very good news indeed :)

Next year's test will be more interesting, I think :)
(remember that the skeleton remodels over about a 10-year interval)
 

jcwat101
health professional


Joined: Mon Jul 19th, 2004
Location: Pasadena, USA
Posts: 2044
Status:  Offline
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

Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 15039
Status:  Offline
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.

Admin
Administrator


Joined: Fri Jul 9th, 2004
Location: USA
Posts: 646
Status:  Offline
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 :)
____________________
Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06 FMS,IBS,fatigue brain fog,muscle pain,fevers, migraines,TMJ Narcolepsy Osteopenia Gerd, Raynauds /D125=48, D25=17(Apr09)/PH1 7-7-08/PH210-7-08/calcium supp/NOiRs covered 1.5hrs work commute low lux home

Sunbeam
inactive member
 

Joined: Wed Dec 13th, 2006
Location: Perth, Australia
Posts: 394
Status:  Offline
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.

cathys2007
Foundation Staff


Joined: Sun Nov 18th, 2007
Location: Connecticut USA
Posts: 1387
Status:  Offline
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

MERCOUMA
health professional


Joined: Tue Oct 30th, 2007
Location: Paris, France
Posts: 44
Status:  Offline
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:)

Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
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.


Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
:) :)
 

Cynthia S
Foundation Staff


Joined: Wed Dec 24th, 2008
Location: N., Arizona USA
Posts: 4148
Status:  Offline
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

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
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 :)
 

Cynthia S
Foundation Staff


Joined: Wed Dec 24th, 2008
Location: N., Arizona USA
Posts: 4148
Status:  Offline
Will do, Cynthia

Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 15039
Status:  Offline
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.

Admin Staff
Foundation Staff


Joined: Sun Oct 10th, 2010
Location: Multiple Locations
Posts: 145
Status:  Offline


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.  


Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
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%

Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 15039
Status:  Offline
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?

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Have you had a recent 25-D assay, Chris?

Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
No I haven't checked 25-D recently.  I'll see if I can get the doc to approve one.

Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 15039
Status:  Offline
There are other options... Home 25-D test kits  :)

Trudy.Heil_NP
Health Professional*


Joined: Fri Jul 4th, 2008
Location: Scottsdale, Arizona USA
Posts: 322
Status:  Offline
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

Sallie Q
Member*


Joined: Sun Jan 25th, 2009
Location: Away From Computer Until Sept, Australia
Posts: 5808
Status:  Offline
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

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
Sallie, the skeleton regenerates approximately every decade. It takes quite a while for the inflammatory damage done pre-MP to disappear...

Sallie Q
Member*


Joined: Sun Jan 25th, 2009
Location: Away From Computer Until Sept, Australia
Posts: 5808
Status:  Offline
I live in hope. after all, Jigsaw is ten years older than I am, maybe more
so if I am offered another DEXA 5 years later, there may be enough improvement to show something.
Meanwhile a little good Aussie cheese, or a tub of Greek yoghurt made by owner of corner store can't hurt, I guess
and maybe I need to take more exercise since I can :D

Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
Summary - still in OSTEOPENIA category,

but increased density for both femurs and spine

year   where              bmd     t-score         z-score
                                  (young adult)   (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
2016 L1-L4             1.255           0.3                0.7

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
2016 left femur neck   1.033      97% -0.3          103%  0.8

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
2016 right femur neck  0.821          -1.9               -0.8

(BMD = bone mass density in gm/cm3)

2016        % change from most recent
Spine                  6.4%
Left femur neck        5.8%
right femur neck       3.4%

Have been more reliably taking ca/mg supplements in the last year.  My trainer has been working on me putting more weight on the right side when lifting.  I'd been relying on the left side for strength without really noticing it.

Prof Trevor Marshall
Foundation Staff


Joined: Fri Jul 9th, 2004
Location: Thousand Oaks, California USA
Posts: 16174
Status:  Offline
:)

Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 15039
Status:  Offline
Good going Chris!

Strength training does seem to improve density.
The body builds bone in response to the load placed on it.

But even walking has been noted to help through some mechanism related to "slow twitch muscles". I'm now able to handle walking the hills around my house and that seems to be good for me on so many levels. :)

scooker48
Member*
 

Joined: Mon Jan 3rd, 2005
Location: Sunnyvale, California USA
Posts: 1738
Status:  Offline
Year Where BMD T-score Z-score Change vs Previous
2001 L1-L4 1.237 baseline baseline
2005 Started MP
2004 L1-L4 1.082 -12.5 -4.6 -12.5
2007 L1-L4 1.069 -13.6 -2.2 -1.2
2011 L1-L4 1.034 -16.4 -1.6 -3.3
2016 L1-L4 1.006 -1.5 0.1 -2.7

2001 left femur neck baseline 0.889 -1.1 -0.1
2005 Started MP
2004 left femur neck 0.83 -1.5 -0.4 -6.6
2007 left femur neck 0.78 -1.9 -0.5 -6
2011 left femur neck 0.749 -2.1 -0.6 -4
2016 left femur neck 0.737 -2.2 -0.7 -1.6
2001 right femur neck baseline 0.959 -0.6 0.4
2004 right femur neck 0.865 -1.2 0.1
2005 Started MP
2007 right femur neck 0.815 -1.6 -0.3
2011 right femur neck 0.783 -1.8 -0.4
2016 right femur neck 0.806 -1.7 -0.2
2001 total mean femmur 0.912 baseline baseline
2004 total mean femmur 0.821 -1.5 -0.7
2005 Started MP
2007 total mean femmur 0.798 -1.7 -0.7
2011 total mean femmur 0.758 -2.0 -0.8
2016 total mean femmur 0.771 -1.9 -0.5

I am unable to make these columns line up; please forgive.
I am not taking any calcium supplements but eat 2 oz of cheeze (approx.) per day.
If someone can tell me what this means, I am grateful.

Thank you. Sherry

Last edited on Fri Dec 16th, 2016 22:50 by scooker48

Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
Summary - still in OSTEOPENIA category,

the weak side (right) femur showing improvement, l femur and spine are reasonably dense.

year where bmd t-score z-score
(young adult) (age-matched)
2007 L1-L4 1.058 -1.3 -1.3
2009 L1-L4 1.153 -0.5 -0.4
2014 L1-L4 1.178 -0.4 -0.1
2016 L1-L4 1.255 0.3 0.7
2018 L1-L4 1.223 0.0 0.5

2007 left femur neck 0.870 -1.5 -0.9
2009 left femur neck 0.928 -1.1 -0.3
2014 left femur neck 0.976 -0.4 -0.2
2016 left femur neck 1.033 -0.3 0.8
2018 left femur neck 1.071 0.0 1.2

2007 right femur neck 0.777 -2.3 -1.6
2009 right femur neck 0.862 -1.6 -0.8
2014 right femur neck 0.794 -2.1 -1.2
2016 right femur neck 0.821 -1.9 -0.8
2018 right femur neck 0.837 -1.8 -0.6

(BMD = bone mass density in gm/cm3)

2018 % change from most recent
Spine -2.5%
Left femur neck 3.7%
right femur neck 7.7%

Haven't been lifting much at all for the last year due to hip/lower spine troubles.

Last edited on Fri Sep 7th, 2018 21:31 by Chris

Joyful
Foundation Staff


Joined: Fri Jun 8th, 2007
Location: USA
Posts: 15039
Status:  Offline
Thanks for the data Chris. :)
Is that last item supposed to be in 2018?

Also, when did you start lifting weights? I understand that load bearing exercises, even walking can greatly improve bone density.

Chris
Member*


Joined: Mon Sep 13th, 2004
Location: Raritan, New Jersey USA
Posts: 1058
Status:  Offline
Yes, it was 2018, and you caught that error in time for me to fix it.  Thanks.

I start weight training at least 5 years ago, maybe more.   I've had to pretty much stop or scale way back for the last 6 months.  I pulled something in the hip/spine area or maybe several somethings as the pain shifted at least once.
I'm starting again, as flexibility has returned.



* We can help you understand chronic disease, but only your physician is licensed to give you medical care *

Powered by WowBB 1.7 - Entire site Copyright © 2004-2020 Autoimmunity Research Foundation, All Rights Reserved
Click here to view our PRIVACY POLICY
Page processed in 0.0980 seconds (31% database + 69% PHP). 23 queries executed.