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lantotibet
inactive member
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Posted: Tue Apr 3rd, 2007 06:16 |
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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)
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onsetsarc87 dxsarc'90 pred 75mgx6wks 90 CVjointrep Lthumb'02 breastca 02 TIA'02/ joints musc bones neuro sinus eyes hearing/tinnitus perip neurop asthenia tendonitis arthritis/ D25=12 D125=37/ 10/05 mino/ben; Ph2:1/06
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LH1953
Member*
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Posted: Tue Apr 3rd, 2007 12:23 |
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| Hi All, Just had my bone density test done today, 4/3 will get results tomorrow. Take Care, Lori
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Lyme, MCS, IC, Asthma, Reflux, UC, Osteopenia, Hypothy, EBV, AMD, CKD. 1,25D-48, MP 8/05, ProAir inhaler,neb. Singulair, Probiotic, Diazepam, Fioricet, Zyrtec Ph3 7/06, NoIRs limited outings D25 7 12/13 Benicar Only 8/13
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Robertrr
inactive member
| Joined: | Wed Jul 13th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 385 |
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Posted: Wed Apr 4th, 2007 09:46 |
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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
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Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) May08 NoIRs outside otherwise normal light exposure
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Foundation Staff
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| Joined: | Fri Jul 9th, 2004 |
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| Posts: | 17204 |
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Posted: Wed Apr 4th, 2007 15:48 |
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FYI...my famously low (75/45) asymptomatic blood pressure is now 90/70.....seems like hypertension to me.  
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madwolf
Health Professional
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Posted: Thu Apr 5th, 2007 11:20 |
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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 11:22 by madwolf
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's, Hypothyroid, Depression, BPH
Initial 125 was 36 in 2003. Current 25-D is 0,
Restart of Phase 1: Sept 9, 2010
Benicar only. For now, q4h baseline, more as sx require.
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shegeek
inactive member
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Posted: Thu Apr 5th, 2007 15:21 |
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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
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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Prof Trevor Marshall
Foundation Staff
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Posted: Thu Apr 5th, 2007 15:50 |
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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 16:07 by Prof Trevor Marshall
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LH1953
Member*
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Posted: Fri Apr 6th, 2007 04:53 |
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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.
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Lyme, MCS, IC, Asthma, Reflux, UC, Osteopenia, Hypothy, EBV, AMD, CKD. 1,25D-48, MP 8/05, ProAir inhaler,neb. Singulair, Probiotic, Diazepam, Fioricet, Zyrtec Ph3 7/06, NoIRs limited outings D25 7 12/13 Benicar Only 8/13
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jcwat101
health professional
| Joined: | Mon Jul 19th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 2044 |
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Posted: Fri Apr 6th, 2007 20:30 |
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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
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.wordpress.com
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shegeek
inactive member
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Posted: Sat Apr 7th, 2007 17:08 |
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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
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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Prof Trevor Marshall
Foundation Staff
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Posted: Tue Apr 10th, 2007 04:28 |
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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
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DNStog
member
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Posted: Tue Apr 10th, 2007 10:38 |
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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...DonnaLast edited on Tue Apr 10th, 2007 12:00 by
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Sarcoidosis systemic; Raynaud's, sinus, wt. gain, GERD, breast ca 11/06, 25D7, claritine, Rx glacier, 05/09 25D5, 125D7
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mcalister
health professional
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Posted: Wed Apr 11th, 2007 03:38 |
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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
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Pulmonary sarc with skin involvement and renal calculi. On MP for 5 years. Phase 4.
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Chris
Member*
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Posted: Wed Apr 11th, 2007 06:13 |
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| 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?
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sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia, fall 2017 - osteoarthritis
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Prof Trevor Marshall
Foundation Staff
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Posted: Wed Apr 11th, 2007 06:22 |
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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.
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lucindarose
Health Professional
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Posted: Wed Apr 18th, 2007 06:57 |
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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
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Sarcoidosis hypercalcemia nephrocalcinosis/frank hematuria LVH pituitary stalk lesion 125D128 MP 01/07 ModPh2 05/07 Dec 08 25D 29 nmol NoIRs Full-time work
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Debbie D.
inactive member
| Joined: | Sun Sep 26th, 2004 |
| Location: | Cleveland, Ohio USA |
| Posts: | 293 |
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Posted: Wed Apr 18th, 2007 07:36 |
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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. 
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Sarcoidosis/lungs,neuro? Menniers,Fibro, hypthyroid, GERD, IBS, depression,anxiety,diabetic,high BP, MP 1/05, Ph2 3/06, Noir's, limited outings covered up, low lux home, 25D19
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Morris W. Milnes
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Posted: Wed Apr 18th, 2007 13:33 |
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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
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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Debbie D.
inactive member
| Joined: | Sun Sep 26th, 2004 |
| Location: | Cleveland, Ohio USA |
| Posts: | 293 |
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Posted: Thu Apr 19th, 2007 03:48 |
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| I checked with Dr. & pharmacy and they have not been given any info re: Benicar.
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Sarcoidosis/lungs,neuro? Menniers,Fibro, hypthyroid, GERD, IBS, depression,anxiety,diabetic,high BP, MP 1/05, Ph2 3/06, Noir's, limited outings covered up, low lux home, 25D19
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Morris W. Milnes
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Posted: Thu Apr 19th, 2007 11:45 |
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I just reviewed your original information request Dr. Marshall and I realize my data wasn't the type you requested. Sorry about that.
Morris
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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