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Julia
Member in Phase 3
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Posted: Sat Aug 11th, 2007 23:52 |
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Reflections on a certain Big Birthday 
I'm an OAP,
(that's a retiree),
Herxing along on the old MP,
Getting younger by the day,
I'm no Senior Citizen, hey!
Most of the things that my dear young doc
Thought were just signs of an aging crock,
As the sarc has healed have gone away,
I'm really only sixteen today!
I'm a fraud, I'm a fraud,
I'm a fraud, that's me,
They're giving me my pension, you see.
They don't realise that I'm counting down,
So sixty will never be coming around!
Hope and energy are zooming now,
Brain fog’s gone and life is wow.
But I'll draw my pension, cos I don't need to say
I'm really only sixteen today!
 ...good old MP! 
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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sunflower
Member in Phase 2/3
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Posted: Sun Aug 12th, 2007 01:43 |
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Happy Birthday, Julia!!! only 4 more for me and i will have caught up with you . very glad you're reaping so many wonderful benefits from the MP and doing so well. can't wait for my turn!
God bless you......sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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tibet
Member
| Joined: | Wed Mar 14th, 2007 |
| Location: | United Kingdom |
| Posts: | 71 |
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Posted: Sun Aug 12th, 2007 01:56 |
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your a fraud ..you'll have to give it back Julia...
stella
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20 years CFS/ME Looking for helpful doctor in UK Have 3 grownup children with disease.
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 346 |
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Posted: Sun Aug 12th, 2007 02:17 |
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Wishing you a happy day and a happy healthier year to come. Enjoy being sixteen.
Best wishes 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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Julia
Member in Phase 3
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Posted: Sun Aug 12th, 2007 18:04 |
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| Thank you, Sunflower and Sunbeam! LOL Stella, no way!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Julia
Member in Phase 3
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Posted: Sun Sep 16th, 2007 01:25 |
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Today was a good day: I had some encouragements. I enjoyed six hours at a church conference, much of it sitting.
1. I made it right the way through 
2. I had to sit at the front as I was taking part briefly, and at the front there's no seat in front to hold on to if I stand for the singing. I've been sitting for hymns for years, but recently my ankle's been so good I've been standing for some of them, but holding on to the seat in front. Today I stood for all the hymns, on my own two feet 
3. This is the best of all:
I used to dread such inter-church gatherings because I couldn't put names to the familiar faces - sometimes couldn't place people at all, just vaguely knew I was supposed to know them. I'm expert at covering up the fact that I don't know who I'm talking to!
Today I was knowing people, even before I got a look at their name badges. And I was placing them in their churches, and connecting them with their families.
This is the second glimpse I've had that my memory might come back  (the first was when I started knowing children's names around the school).
The softly softly approach has worked for this cycle. I have had plenty of minor herxing, all tolerable, and the eczema flare has hardly been worth calling a flare at all... yay!
Postscript: I just realised I also came home and stood and made a full roast dinner, and apple & blackberry crumble - had to walk up our looong garden to pick the blackberries too! And I'm not really tired yet
Last edited on Sun Sep 16th, 2007 03:20 by Julia
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Julia
Member in Phase 3
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Posted: Wed Apr 9th, 2008 17:38 |
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Four years on the MP: am I not cured yet?
Folks come to the MP asking, naturally enough, is it a cure?
Sarcoidosis isn't a fixed set of symptoms, so that when those symptoms resolve, you're cured. Sarcoidosis is just a label stuck on a group of testable conditions by our noble but highly human and fallible medical guides.
When I found I had sarc about five years ago, as far as I was concerned I was a moderately healthy person with just a serious eye condition and a bad reaction to a combination of a cod liver oil supplement and a sunny holiday. If I could have had those two things - uveitis, and hypercalcaemia with its crippling side-effects - cured, I would have happily gone back to being a 'moderately healthy' person... albeit a rather allergic person, with a few signs of getting older...
I didn't like the idea of steroid treatment, and decided to try the MP instead. My hypercalcaemia was cured in the first few weeks, and the uveitis was cured in the first couple of months. So I was cured of my sarc symptoms, the only ones I knew about (I never had it much in the lungs, which is unusual).
But in my 'moderately healthy' state, I also had:
fatigue, ankle osteoarthritis, knee stiffness & pain, muscle cramps, limb & joint pains, restless legs, ‘tennis elbow’, carpal tunnel syndrome, sweats, cough, dry mouth, tinnitus, numbness & nerve pains, lifelong eczema, hay fever, swollen glands, nose bleeds, nocturia (needing the bathroom in the night), dust mite allergy, unexplained bruising, arm fatigue (couldn’t reach something off a high shelf), phobia, brain fog, inability to read or concentrate, memory loss, and mild Obsessive Compulsive Disorder…
Through the process of immunopathology, I came to realise that all these were symptoms of Th1 disease, and as I kept going on the MP, they began to resolve. The only ones I still have some bother with (apart from a bit of herxing sometimes) are ankle arthritis (improving slowly), knee stiffness (improving slowly), restless legs (less frequent), and eczema (comes & goes with certain antibiotics).
Now, am I cured of sarc?
...good old MP!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Julia
Member in Phase 3
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Posted: Mon Jun 8th, 2009 00:24 |
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Arthritis can not be cured...
Look, Dr Rheumy, I ran, I ran!
You said I would never - I can, I can!
You told me the bones in my ankle showed wear,
Arthritically mangled beyond repair;
Deformed they would be for the rest of my days,
A stout walking stick my companion always.
"Crippled for life," is what you foretold.
"Get used to it," you said, so hostile and cold.
A cripple for life is what I might be,
Were it not for the wonderful, priceless MP!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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BARNEY
Moderator
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Posted: Mon Jun 8th, 2009 00:56 |
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Julia,
BEAUTIFUL!!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Pipistrelle
Member in Phase 2
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Posted: Sun Jun 14th, 2009 21:45 |
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Julia,
What joy and glee in your poem! There's no stopping you now!!
Morag xxx
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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Julia
Member in Phase 3
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Posted: Thu Oct 29th, 2009 00:31 |
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An update (from my PR, May 2009)
I've been five years on the MP, I'm feeling great, and steadily getting even better. I haven't taken antibiotics for five months, just olmesartan 40mg every 8 hours. It would appear my immune system is now functional without antibiotics.
I still get mild herxing, and my attempts to reduce the olmesartan dose have so far not been successful - twice I tried and developed nasty infections, as if the immune system couldn't cope without it. Well, if I have to stay on it for life, it's a lot less medication than most people my age are on!
So what makes me think my current mild symptoms are herx rather than a return to the disease state? Two things - I feel on top of the world, and things keep getting better
My ankle osteoarthritis is getting better! Officially there's no way it can! I'm rejoicing in increased mobility. I can walk much further without a stick, and only use my wheelie walker for longer walks.
A while ago I had two days of agony when my bad knee suddenly flared up. Then it resolved - and has since been very much better than it's been in years. Now with the ankle and the knee being so much improved, it's mainly a moderate ache in my right thigh that hinders complete walking freedom if I try to go any distance without my walker.
And at last I'm finding I can stick to a lower-carb diet and lose some weight - very badly needed, but previous attempts have been made very difficult by carb cravings and false hunger. Now something just seems to have clicked into place, and my relationship with food is more normal.
My latest lab results show further improvement since the last ones nine months ago. There is nothing now that really worries my docs - apart from my very low "vitamin D" of course!
The only bad news is that the eczema level is sometimes quite high even without antibiotics. Whether this means it will eventually respond to the MP the way everything else has, remains to be seen. Perhaps it just means, as my docs think, that it's nothing to do with the sarc and will do its own thing regardless. Watch this space!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Julia
Member in Phase 3
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Posted: Thu Oct 29th, 2009 00:36 |
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August 2009
Started back on antibiotics after seven months on Benicar alone, to see if I could get even better. Immediate increase in herx. Also as soon as I started the mino, I started getting hungry again, and the low-carb diet became a struggle. My old enemy, eczema, began slowly to rise again, though not as badly as previously.
September 2009
Mobility has increased dramatically. I've given up my wheelie walker, and no longer use my walking sticks. I can't say I'm completely discomfort-free yet, but I can walk for over three miles without any aids. I can climb stairs without holding on to the banister. I don't use my disabled badge any more. I am not disabled!
Thank you to the research team who discovered and developed this treatment! Thank you to the people who shared it freely on the internet and guided me through it! Thank you to my wonderful, open-minded doctor who prescribed it!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Julia
Member in Phase 3
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Posted: Thu Oct 29th, 2009 01:01 |
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Pipistrelle
Member in Phase 2
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Posted: Thu Oct 29th, 2009 11:41 |
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Brilliant Julia! So lovely to see your great progress in pictures.
Thanks - it has given me a much-needed shot in the arm!
Morag xxx
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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Carole
Board Staff
| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
| Posts: | 673 |
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Posted: Thu Oct 29th, 2009 17:29 |
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| Your news and photos are marvelous, Julia! May your journey take you to even greater heights! Heartfelt hugs! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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Dr Trevor Marshall
Research Team
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Posted: Thu Oct 29th, 2009 17:48 |
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You know Julia, I had no idea how much you were suffering back in the early days. I try and keep up with those of us who are most ill, and I apologize for not having realized the degree to which you had to struggle back then.
It is great to see those days fading You still have an amazing journey ahead of you, which will unfold as the months and years go by But at least you are mobile again, and can start enjoying life
Thanks for all your help...
..Trevor..
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GeorgeinRollaMO
Member in Phase 3
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
| Posts: | 489 |
| Status: |
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Posted: Thu Oct 29th, 2009 19:50 |
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Julia,
One BIG "ATTA GIRL" for you!
I am sooooo happy for you!
Wishing you, and all wellness!!!
Dark Vader...aka, George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Ron
Member in Phase 2
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Posted: Fri Oct 30th, 2009 00:08 |
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Very impressive Julia!!
Thank you for sharing these pictures with the world!
Ron
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Dad with RA, MP 01/08| 25D 16.8| Apr08 25D-7.1 Sep08 11.6 Mar09 7.6 Jul09 17| oxycodon, NoIRs, limited outings covered up
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Sallie Q
Member in Phase 3
| Joined: | Mon Jan 26th, 2009 |
| Location: | Australia |
| Posts: | 61 |
| Status: |
Offline
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Posted: Fri Oct 30th, 2009 03:15 |
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come and run on our beaches anytime, Julia
and let me know if you want to do it on my husband's birthday
which seems to be an exciting day for you also
Sallie
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20yrHotFlushSjogrensCFSb.cancer1990stress57-83 60%dysreg.vD 13.2 Sep08ph1 NoIRlowLux JanModPh2 May09Ph3 25DMay19ng/ml,Aug11.2
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Freddie Ash
Member in Phase 3
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Posted: Fri Oct 30th, 2009 13:16 |
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HI JULIA
This is Fred in WV. That is so great about how you have recovered from all that you have suffered. I am so glad to read about it and see all those great pictures. We all can never thank Dr Marshall for all he and his staff has done for every one of us. Keep up the great work.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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