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didierchretien
Member in Phase 3
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Posted: Mon Oct 13th, 2008 17:59 |
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I was diagnosed with sarcoïdosis in April 2007. At that time it was a relief to put finally a name on something that was poisoning my life since many many years. I knew since a long time that something was wrong with me by observing my friends, my family, just saying inside of me how much they look full of energy, how easy they seem to adapt themselves in a warm room while it was uncomfortable for me (sweating, fatigue,…), how many things they were able to do, how quick they could react to a question and interact with people while I was suffering from a kind of slowness, like somebody who has drunk.
As far as I remember my first serious complain about fatigue and sub maxillary/neck swollen lymph nodes was in 2001. Since then, periods of fatigue occurred more often and it was always after a sunny week-end. Starting from about the end of 2005, my memory losses, lack of concentration, fatigue, headaches, speaking difficulties started to be more evident and I was struggling to maintain the quality of my work. Memory losses became at that time very problematic, leading to missing tasks to be scheduled, to be done, while I honestly didn’t remember anything about the request. I was thus forced to carefully write anything on paper, obliged to review them often, losing time and effectiveness. I don’t need to specify that in this kind of situation you don’t receive any support from your management, thinking you get out of control, that you are on the downward slope, missing enthusiasm, etc..
Another thing that didn’t catch my attention at the beginning was the dizziness, the discomfort when I was submitted to light variations. I did often the remark when going to the supermarket with my wife since many years. The bright artificial lights were very uncomfortable to me and I often felt suddenly dizzy. The same story at work, where the same kind of lights are used, I stopped often to work, looking towards theses lamps, telling to my colleagues that my body seemed to react negatively (sweating skin face, lack of concentration, dizziness,..). Everybody thought I was crazy!
It was at the end of 2006, after having done some heavy works in my house that my fatigue, my sub-maxillary and neck lymph nodes stayed problematic every day. Even after long resting periods I was unable to recover my energy.
My main symptoms were fatigue, swollen lymph nodes, memory losses, lack of concentration, headaches, migraines, insomnia, polyuria, oesophagus, pruritus, speaking and understanding difficulties, digestive problems, skin itching, ears pain, photosensitivity..
From that point on I was most of the time bed bound, I took Prednisone for one year, while a mid fatigue persisted, it seemed effective at short term in hiding my disease but it was impossible to stop it without symptoms became worse than before. I would strongly advice to stay far away from cortisone, the takeoff is really easy but the weaning is really hard, like landing a plane in big turbulences at the crash limit, the hardest thing I did in my life for sure! Thanks to Benicar I was able to wean in a bit less than 4 months. WOW!
After weaning Prednisone, I have been on the MP(Phase1&2) for 4 months and I have already experienced a lot of improvements :
- Left knee looseness (since many years):
Looseness is completely gone
- Small cyst (about 1cm) at the back of my neck since at least 5 years:
Small cyst is almost completely gone
- Skin forehead that was greasy and shiny, even shortly after I washed it:
My skin forehead stays now mat and normally dry all along the day (since Benicar)
- Severe polyuria, pain, weak urinal flow, my urologist did a lot of tests and told me for sure it was not bacteria related (like many other “specialists”)
Polyuria is completely gone and my urinal flow is far much better
- Sub-maxillary highly swollen lymph nodes which really gave me the feeling to pump my energy (doctor thought at first at Hodgkin's lymphoma):
Lymph nodes size has hugely decreased since a few weeks
- Fatigue, lack of energy:
Feel like my energy is coming back strongly since a few weeks.
I feel very euphoric…
- Migraines, this was a daily symptom since many years.
No relapse of painful migraines since on Benicar
- Oesophagus problems: gastro-oesophageal reflux and slight ulceration
No more oesophagus problem since on Benicar
- Diarrhea/constipation: it was really recurrent since many years
No more problems since many weeks
- Photosensitivity, in January I was watching TV with my NoIR1% (almost in monochromatic color) and I felt suddenly dizzy when exposed to bright lights
I can now watch TV, use my pc almost as much as I like, very often without glasses, sometimes with NoIR18%
I don’t feel anymore dizzy in light variation environment and can tolerable much more light than before the MP
My improvements are so huge that I have often a good weep so much I am happy!!
Life will be soon hugely easier for me…
Thank you so much mister Trevor Marshall!!!!!
 
Didier
____________________
Sarcoidosis 25D10(Jan08) 25D6.9ng(May08) 25D7.1ng(July08) BeniFeb08 to wean prednisone Ph1Jun08 Ph2Jul08 Ph3Jan09 NoIRs low lux home limited outings covered
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didierchretien
Member in Phase 3
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Posted: Sun Nov 9th, 2008 22:45 |
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MP meds:
Benicar 40mg [0600 1200 1800 2300]
Phase 2
Non-MP meds used this week:
None
Light exposure:
Never in direct sunlight, less than 1h/week in my garden.
Don't wear my NoIR anymore
Symptoms:
All symptoms very tolerable
Pain: kidneys(2C), shoulders/neck/cervicals/back(3C), tinitis(2C)
Other: brainfog(3C), bright light sensitivity(1C), fatigue(2I)
Avg BP 115/65
Comments:
Less and less photosensible, I will soon be able to return to the daylight, yes yes yes!!!
I have lost about 15% of my weight in one year, that's great!! my body looks like when I was 18 years old, I am 38.
Bad moments are very rare and very tolerable, good moments are magic, with an amazing energy, an incredible respiratory capcacity and a physical force that I don't remember to have.
I am doing MTB on a home trainer in my garage and I will very soon do the professional training so much it becomes very very easy.
Very impressive!!!
Plan:
Continue
Questions:
None
You are the best!
Didier
Nov 19th 08:
Symptoms:
All symptoms very tolerable
Pain: kidneys(2C), shoulders/neck/cervicals/back(3C), tinitis(2C)
Other: brainfog(3C), bright light sensitivity(1C), fatigue(2I)
Comments:
Still IP but very very tolerable (more on day8)
Since a few weeks I am able to fall asleep very easily, no sleeping drug needed anymore. I wake up full of energy and don't need to rest during the day and I feel exceptionally good!
WOW!
____________________
Sarcoidosis 25D10(Jan08) 25D6.9ng(May08) 25D7.1ng(July08) BeniFeb08 to wean prednisone Ph1Jun08 Ph2Jul08 Ph3Jan09 NoIRs low lux home limited outings covered
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didierchretien
Member in Phase 3
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Posted: Tue Dec 2nd, 2008 20:57 |
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MP meds:
Benicar 40mg [0600 1200 1800 2300] + Phase 2 meds
Non-MP meds used this week:
None
Light exposure:
More and more back into diffuse light
Don't wear my NoIR anymore
Symptoms:
All symptoms very tolerable
Pain: kidneys(2C), shoulders/neck/cervicals/back(3C), tinitis(2C)
Other: brainfog(2C), bright light sensitivity(1C), fatigue(1I)
Comments:
Slightly more IP on this level
Feel a bit less static in my head.
Have put back all the light bulbs in my house but even fully populated I find that the light is still too weak and dark. WOW!
Quite stable BP at about 120/60
No need to say that my energy is UP!
Plan: Study how I will ramp up in Phase3
Didier
Dec 12th 08:
Light exposure:
More and more back into the light
Don't wear my NoIR anymore
Symptoms:
All symptoms tolerable
Pain: kidneys(2C), shoulders/neck/cervicals/back(4C), tinitis(2C)
Other: brainfog(2C), bright light sensitivity(1C), fatigue(1I)
Comments:
Slightly more IP but stable BP and energy!!!
Plan:
Will be soon in phase3
I am so happy!!!
____________________
Sarcoidosis 25D10(Jan08) 25D6.9ng(May08) 25D7.1ng(July08) BeniFeb08 to wean prednisone Ph1Jun08 Ph2Jul08 Ph3Jan09 NoIRs low lux home limited outings covered
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didierchretien
Member in Phase 3
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Posted: Mon Jan 5th, 2009 19:36 |
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MP meds:
Benicar 40mg [0600 1200 1800 2300]
Phase 3 meds
Non-MP meds used this week:
None
Light exposure:
More and more back into the light
Don't wear my NoIR anymore
Symptoms:
All symptoms tolerable
Pain: kidneys(2C), shoulders/neck/cervicals/back(4C), tinitis(2C), abdominal(2I)
Other: brainfog(2C), bright light sensitivity(1C), fatigue(1I)
Comments:
Two days ago I went in a IKEA shop, it was very crowdy with strong lights a bit everywhere.I took a lot of pleasure walking in the different paths of this big shop, slaloming between people, climbing stairs, etc... I felt so good, in close contact with the reality, responsive, it was soooo easy and really a new experience for me.
____________________
Sarcoidosis 25D10(Jan08) 25D6.9ng(May08) 25D7.1ng(July08) BeniFeb08 to wean prednisone Ph1Jun08 Ph2Jul08 Ph3Jan09 NoIRs low lux home limited outings covered
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