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SanDiegoJoy
Member in Phase 3
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Posted: Fri Dec 12th, 2008 01:22 |
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Posted: Thu Dec 11th, 2008 14:16
Just checking in and success story to report!
Have done all combos at least 2 times, some 3-4 times. I tolerate getting up to full dose rather quickly and some combos I don't get much reaction from now. My 3 yr. anniversary since I started Mino is 12/16.
I feel about 90% improved and am now looking for employment (bad timing being in a recession and Xmas), but I expect to find something in my field in the first quarter of 2009, since it's a rather specialized field).
Within the last 6 wks. I started noticing dramatic improvements in my photosensitivity, I can't wear even the lightest sunglasses in the house anymore and have to open the blinds part way if it's not real sunny out; it's gotten really dark in here! and mostly wear only the med. sunglasses outdoors now.
My mental state continues to improve also, short-term memory, ability to learn and retain knowledge, understand movie plots, etc. Continue to feel 100% stable mentally, no more depression, and only moderate fatigue.
My gums are doing extremely well even though it's been a year since I had my teeth cleaned (no insurance; not working). I used to have to get them cleaned 3 or 4 times a year. My dry mouth and dry eyes are almost cleared up.
Just have joint pain and especially R shoulder pain which started with the MP about 2 yrs. ago and radiates up the collarbone and wakes me up at night- quite painful (take Norco for). I have a small bone growth on the shoulder and one on the collarbone so it may be from that. I have even larger oners on my elbows; they go numb easily if I lean on them and go numb at night sometimes. I don't know if the bone nodules will ever go away; I assume they will eventually. A few knots on my knees also.
I'm lucky I've really only had joint Sarc though and not in my lungs or any other organ problems that I've noticed. Osteoporosis (Dexa scan) is same as last year; not really worse and not really better, but I expect that will improve in the next decade. I realize it's a slow process to rebuild bone.
Plan to continue to work through all combos once or twice more for next couple years and do tuneups after that.
I feel really happy for the first time in 10 years. Moving back to San Diego where I was happier and can get employment; at least I have the energy for the move.
Thank you MP (Dr. Marshall!) for giving me my life back. I was extremely lucky to come across the website just when I needed it. Forever grateful, Joy Day
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Joint/skin Sarcoidosis Osteoporosis| short-term memory loss| NOIRs| PhI 12/05| PhII 4/06| PhIII 12/06| D <7 5/09 D <4| Levothyroxine 75mcg/d; Bi-Est 5mg/Prog 10%gel/d; Klonopin 1 mg. & Tramadol 50mg HS; Voltaren gel prn joint pain
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Dr Trevor Marshall
Research Team
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Posted: Fri Dec 12th, 2008 01:51 |
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SanDiegoJoy
Member in Phase 3
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Posted: Sat Oct 10th, 2009 18:39 |
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Status update 10/09:
MP Meds: Benecar 40mg q6hrs. 12/5/09 will be 4 yr. anniversary on MP. Palliative non-mp meds: Tramadol 50 mg. q6 hr. joint pain, Voltaren (NSAID) topical gel prn, .5 mg. Klonopin for sleep
Light exposure: Not really photosensitive now - hooray! Wear lightest prescription NOIR-type sunglasses outdoors & sunscreen; can have blinds open now; Do not sit in direct sun however!
Symptoms: Mild joint pain in areas of cystic bone growth on elbows, knees, wrists, etc. Sometimes take extra Benicar 20mg sl for liver tightness and discomfort. Mental clarity improving, but not perfect; still some short-term memory issues and can't remember names of people/things. Brain fog almost gone. Overall I am greatly improved from a year ago and can go on walks and hike, but found I was overdoing it a bit on the hiking so cut back a bit. Have had no depression for close to a year now, which is fantastic! Don't feel 100% ready to work, but must work in the next few months. Would not have been able to even contemplate going back to work if not for the MP!!!!!!
Comments: Weaned off Norco/Vidodin after 11 years of use! Tramadol is great substitute pain med because I don't feel drugged. Still trying to wean off Klonopin (after 11 yrs. of use) which has turned out to be VERY difficult. Got pounding heart, hand tremors, skin eruptions, severe joint pain, severe insomnia, vision changes, and many more extreme symptoms from weaning off it too quickly, so restarted it low dose. Have reduced dose 75% from 2 mg/night to .5 mg.
For anyone taking Klonopin (Clonazepam) here is a Warning - See list below of symptoms it causes just during useage (many more symptoms during withdrawal if done too quickly). I read it can take months (or longer) after you stop it for your brain to get back to normal. Here is a list from a drug info site on the web. Dr. Marshall had wisely advised me some time back to try to get off of it before I went back to work. Too bad my doctors never mentioned what a bad drug it is and not a good idea to take it for such a long time!
SIDE EFFECTS OF KLONOPIN USEAGE:
Common:
Drowsiness
Impairment of cognition, judgment, or memory
Irritability and aggression
Psychomotor agitation
Lack of motivation
Loss of libido
Impaired motor function
Impaired coordination
Impaired balance
Dizziness
Cognitive Impairments
Short-term memory loss
Anterograde amnesia (common with higher doses)
Some users report hangover-like symptoms of being drowsy, having a headache, being sluggish, and being irritable after waking up if the medication is taken before sleep. This is likely the result of the medication's long half-life, which continues to affect the user after waking up, as well as its disruption of the REM cycle.
Plan: Continue reducing Klonopin until off it. Have had some nights of much better sleep already. Trying to find employment. Hopefully I will feel even better once I get off the Klonopin. Will stay on Benicar only until stabilized and working a few months. Then plan to restart MZC at low dose and keep it low dose so as not to interfere with working. Plan at least a couple more years of MP antibiotics until no IP from them. Not sure how long one should stay on Benicar after all done with antibiotics and feeling pretty normal. Could someone advise on that? Maybe do an additional year of Benicar after no IP from antibiotics? (I have never gotten any IP from Benicar alone but it does help my liver pain and some mild flank pain.)
Thank you Dr. Marshall & wife and all moderators. Appreciate all your assistance in my return to health!Last edited on Sat Oct 10th, 2009 19:37 by SanDiegoJoy
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Joint/skin Sarcoidosis Osteoporosis| short-term memory loss| NOIRs| PhI 12/05| PhII 4/06| PhIII 12/06| D <7 5/09 D <4| Levothyroxine 75mcg/d; Bi-Est 5mg/Prog 10%gel/d; Klonopin 1 mg. & Tramadol 50mg HS; Voltaren gel prn joint pain
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Dr Trevor Marshall
Research Team
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Posted: Sat Oct 10th, 2009 18:51 |
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BARNEY
Moderator
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Posted: Sat Oct 10th, 2009 19:06 |
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Hello Joy,
Wonderful News!!!
HANG IN THERE, WE WILL MAKE IT!!!!
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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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