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Aussie Barb
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Posted: Sun Sep 16th, 2007 19:43 |
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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
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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
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Barb❤️ Dx Inflammation/ Endocrine Imbalance 2003| Depression| Chronic Fatigue/ Post Exertional Malaise| 24+ years not Dx| MP Aug04-Aug2010/ highly sens IP/^Tox| barbliv @ hotmail.com | ABC of MP| Barb's Story
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Kas
member
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Posted: Wed Sep 19th, 2007 14:41 |
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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.
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver, later in kidneys. Anemia. Started MP 2004. Non- stop now since 2007. No abx since March 2008.Olmetec only. Natural progesterone cream one daily x 3 weeks a month; cal / mag supplement. B12 when levels
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Chris
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Posted: Wed Sep 26th, 2007 11:35 |
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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
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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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Foundation Staff
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Posted: Wed Sep 26th, 2007 13:22 |
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| 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.
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jcwat101
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Posted: Wed Sep 26th, 2007 16:11 |
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Chris,
I wonder how much calcium you have been getting during the last 5 years (diet and supplements combined)?
Joyce Waterhouse
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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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Chris
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Posted: Thu Sep 27th, 2007 06:49 |
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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
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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: Thu Sep 27th, 2007 08:13 |
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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.
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jcwat101
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Posted: Thu Sep 27th, 2007 08:46 |
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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 08:55 by jcwat101
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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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Frans
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Posted: Thu Sep 27th, 2007 09:08 |
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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
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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jcwat101
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Posted: Thu Sep 27th, 2007 12:29 |
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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
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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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scooker48
Member*
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Posted: Sat Oct 27th, 2007 22:56 |
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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
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D25, Total: 12 measured 11/3/15 Started MP=01/04/05 Diagnosis: Sarc 12/04; "cat scratch disease" or necrotizing graunulomas 10/88; Raynaud's (diagnosed 1980?)
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P.R.N.
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Posted: Sun Oct 28th, 2007 13:47 |
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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.
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mcalister
health professional
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Posted: Mon Oct 29th, 2007 03:37 |
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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
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Pulmonary sarc with skin involvement and renal calculi. On MP for 5 years. Phase 4.
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Jigsawplus
inactive member
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Posted: Mon Apr 7th, 2008 03:23 |
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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 03:27 by Jigsawplus
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CFS/ME '93 following Chlamydial pneumonia '92. Helped by abx from '98.1,25-D:25-D(6/06,50:26;10/06,50:19;4/07,40:150. 25-D(7/07,8). 4/12/07.Benicar, 4 X 40mg/day. 5/1/07,Mino 25mgQ48H. 5/11/07,Mino 50mgQ48-72H.
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Pundun
health professional
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Posted: Mon Apr 21st, 2008 20:32 |
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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.
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CFS. IBS, hypothyroid, rickettsia, 125D73, MP 1/07, ModPh2 4/07, 3AbxModPh2 6/07, Ph2, 9/07, Ph3 2/08, Noirs, limited outings covered up, low lux home, T3, Calcium, HRT, 25D10
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jcwat101
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Posted: Mon Apr 21st, 2008 22:26 |
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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 22:28 by jcwat101
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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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Aussie Barb
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Posted: Tue Jun 3rd, 2008 16:15 |
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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.
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Barb❤️ Dx Inflammation/ Endocrine Imbalance 2003| Depression| Chronic Fatigue/ Post Exertional Malaise| 24+ years not Dx| MP Aug04-Aug2010/ highly sens IP/^Tox| barbliv @ hotmail.com | ABC of MP| Barb's Story
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Aussie Barb
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Posted: Tue Aug 19th, 2008 12:05 |
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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!
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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|
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Barb❤️ Dx Inflammation/ Endocrine Imbalance 2003| Depression| Chronic Fatigue/ Post Exertional Malaise| 24+ years not Dx| MP Aug04-Aug2010/ highly sens IP/^Tox| barbliv @ hotmail.com | ABC of MP| Barb's Story
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Sunbeam
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Posted: Wed Feb 4th, 2009 20:47 |
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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
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Prof Trevor Marshall
Foundation Staff
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Posted: Wed Feb 4th, 2009 21:10 |
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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)
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