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RevDennis
Member in Phase 3
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Posted: Mon Jan 23rd, 2006 04:12 |
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Day 22 - Benicar 40q6h Day 12 - 25q72h
Good Evening,
Please note a change on my dosing. I am going to try to go out to 72 hrs on my mino. Today has gone well with very mild herx in the form of a few pains here and there, nothing much. Tonight, in fact, about 30 minutes ago my shoulders and neck started hurting some as I was sitting with my wife watching a movie in the living room. Lights were low and we have a big screen tv and we were back from it and I wore my noirs as always. It has already let up so I am going to go ahead and run out to 72 hrs and see if my herxes get worse or I get a free day. Time will tell.
Mondays are always tough for me. I preach twice on Sundays and I am also involved in our church praise band playing the bass guitar. The preaching and teaching alone wear me out and Monday I am really tired. With the protocol, I have missed work a couple of times on Mondays so we will see what happens tomorrow. The people I do the accounting for understand my problem and have worked with me on this. We are all just happy I found the MP and I will now be able to live to see grandchildren some day.
Thanks all for your help and encouragement.
RevDennis
Last edited on Mon Jan 23rd, 2006 04:13 by RevDennis
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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Tue Jan 24th, 2006 05:01 |
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Good evening,
Day 23 - Benicar 40q6h Day 13 - mino 25q72h
This is my third day after my mino dose. I have been tired all day. I have had some muscle pain in my back this afternoon but nothing very strong. Today has been very uneventful. I think I will go back to 48 hr doseing to get the most benifit.
Have a good night.
RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Wed Jan 25th, 2006 03:27 |
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Day 24 - Benica 40q6h Day 14 - Mino 25q48h Dose 7
Good evening,
Today alerted me to how easy yesterday was. I took my mino dose at midnight and went to bed. I woke up alot with a stuffy nose, I wear a nasal mask with CPAP, or leg pain. When I got up at 6:30am, I got ready for work but I was hurting all over. I took my Benicar dose that was due and got my mino ready incase I needed to take it to calm down the herx. After about 10 minutes the pain started to ease up quite a bit and by mid morning was just sitting in the background whenever I got up from my desk. I also got up with a headache. I took a couple of tylynol and it went away pretty quickly. Tonight my back muscles are starting to hurt. It is amazing how wide spread these bugs really are in our bodies. It will be good to get rid of them all.
Good night,
RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Thu Jan 26th, 2006 03:44 |
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Day 25 - Benicar 40q6h Day 15 - mino 25q48h
Good evening,
I slept better last night. I was a little stiff when I got up this morning but that soon went away. Have had a little pain in neck and shoulders but not very strong. I have found that after sitting at my desk at work for a while, when I get up it, feels like I have been driving in a car for a long time. Very stiff and painful until I walk it off a little. Other than that, not too eventful today. Tomorrow is a mino day, if the next 2 days go well I will probably up my mino to 50mgs.
Moving forward to healing. 
Have a great evening!
RevDennis
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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Fri Jan 27th, 2006 03:45 |
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Day 26 - Benicar 40q6h Day 16 - Mino 25q48h Dose 8
Good evening.
I took my dose at midnight this morning and went to bed. I woke up every hour through the night. I'd wake up, look at the clock and go back to sleep. I have been achey all day with all over body pain. This after noon I was having a burning in my chest. It was like when I had pluricy(sp) back in October. It did not effect my heart rate or breathing, just a burning in the chest wall. I figure it is just another herx. It went away after about an hour. I still feel achey but it is tolerable, just a nucience. If the pattern holds, tomorrow should be pretty easy. We will see if it holds.
Have a great night.
RevDennis
Last edited on Fri Jan 27th, 2006 03:45 by RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Sat Jan 28th, 2006 04:27 |
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Day 27 - Benicar 40q6h Day 17 - mino 25q48h
Good evening all,
Well today has certanly been a day. I slept ok last night, waking up several times. I have had a low grade pain it seems like every where in my body today. Nothing strong just strong enough that when I get up to walk from one room to another I say ouch. I was reading through a number of the sections on the MP site yesterday and today, reminding myself of stuff and seeing how people are doing. I was reminded that my goal right now is'nt really to feel great but to keep herxing tolorable and when in control move to the next level. I think I am there now, so tonight when I go to bed I will be taking my next dose of mino and I will take 50mg and see how this old body will respond. I have plenty of mno and benicar on hand in case I need it. So, onward and forward to killing those blasted bugs.
RevDennis
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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Sun Jan 29th, 2006 04:15 |
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Day 28 - Benicar 40q6h Day 18 - Mino 50q48h Dose 9
Good Evening All,
Well I upped my mino to 50mg on this dose. Sleep was very broken. Nothing in particular just could not stay asleep. My body has hurt all over today. A couple of years ago I had a lot of pain in my wrist and had to wear a brace on it for a couple of months. I had some of that pain today off and on. mostly tenderness. I expected it to come back at some time because it is sarcoid related. I had this problem in one shoulder and one hip. So I suppose at some time those will come back too. That's ok though because this time I know that this is getting rid of it. None of the herxing was too strong though just tiring if you know what I mean. It would be nice to sleep though the night again but naps will do until I get there.
Have a good evening.
RevDennis
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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3931 |
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Offline
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Posted: Mon Jan 30th, 2006 00:05 |
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"A couple of years ago I had a lot of pain in my wrist and had to wear a brace on it for a couple of months."
Your post made me remember a time, Pre-MP, when my wrist hurt for no good reason and I had to wear a wrist brace for relief for a while. I'd nearly forgotten about it until I read your note. I find herxing makes me wonder sometimes about a lot of old injuries or what seemed to be unrelated inflammation/infections. The bacteria like injury sites on me, and many pre-Sarc Dx ailments now are connecting the dots into a bigger Th1 picture.Last edited on Mon Jan 30th, 2006 00:05 by jrfoutin
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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RevDennis
Member in Phase 3
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Posted: Mon Jan 30th, 2006 04:09 |
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Day 29 - Benicar 40q6h Day 19 - Mino 50q48h
Good Evening,
Well, it is the second day on 50 mg of mino. Yesterday I hurt. Today, not so bad. I am starting to hurt a little bit this evening but today I was just mainly washed out. No energy at all and my arms felt like lead weights. I took my usual Sunday afternoon nap and that helped some but ran down again. I think this happened after my first 25mg mino dose. I have also been coughing a bit today but that may just be something in the air. My wife has been coughing also. My wrist was better today so we will see where that goes.
Sometimes I feel bad about just posting all the bad things going on. Not much has changed yet but I have not been on the MP very long yet and I don't expect any real improvement yet. For me, seeing new things hurt and new pains is exciting because I see it as new bugs getting killed. To me that is the positive. I know that I have a lot of bugs in me so there is a lot of killing to take place. Let it happen.
Have a good evening.
RevDennis
Last edited on Mon Jan 30th, 2006 04:10 by RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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tom
Member in Phase 3
| Joined: | Mon Sep 12th, 2005 |
| Location: | New York USA |
| Posts: | 220 |
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Offline
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Posted: Mon Jan 30th, 2006 05:42 |
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Dear Reverend
You needn’t feel bad about posting “bad things”. Personally I learn from other members based on their personal experiences. Today was my first day on Mino 50mg. Like you, I too have not experienced any definitive changes with the exception of some mild aches, pains and increased depression. Having previously acknowledged this, posts like yours help me abrogate my fears that I should be feeling otherwise.
Keep posting
Tom
Last edited on Mon Jan 30th, 2006 05:45 by tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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kenc
Member in Phase 3
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Posted: Mon Jan 30th, 2006 17:35 |
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Jrfoutin,
The MP seems to have awakened old injury sites in my body as well. Some time ago I injured my right shoulder in a skiing accident. The pain and the discomfort gradually disappeared. Now on the MP, the pain and discomfort from that injury have come back in full force. Perhaps it was the predinsone that was hiding the injury or perhaps as you suggest bacteria like injury sites. Curiously the MP had this effect on me before I completed the steriod weaning.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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RevDennis
Member in Phase 3
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Posted: Tue Jan 31st, 2006 03:59 |
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Day 30 - Benicar 40q6h Day 20 - Mino 50q48h Dose 10 (dose 2@50)
Thanks to all that have posted for the encouragement. I took my second 50mg of mino at midnight this morning and went to bed. It definately effects my sleep. I sleep for about an hour then wake up and doze off and on the rest of the night. Today started out like a lamb. I was still very tired. My arms still feel heavy and I have been short winded today. Pain wise this morning I thought I was going to have an easy day. At about 7 pm tonight that changed. I am hurting all over and especially on my right side rib cage and back. I really feel old when I get up from my chair and walk accross the room. My benicar is due in an hour so I will probably take it early. The herxes usually relax when I take it. I was beginning to wonder if I was going to have it easy at 50mg. I guess not.
Well, I know its working, I am definatly happy about that.
Have a great evening everyone.
RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Wed Feb 1st, 2006 04:10 |
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Day 31 - Benicar 40q6h Day 21 - Mino 50q48h
Good Evening,
Well, I ended up taking my Benicar about 45 minutes early last night because the rib pain was growing worse. Within about 30 minutes the pain started easing and within an hour it was gone. It has not come back today. I have been tired but thats about it all today. I have had one other herx which I forgot to mention yesterday but it has been ongoing for a couple of days. Who would believe we could forget something. Well the herx is with my eyes. They have been iching alot. Also, it has become harder to see. It sometimes is like my eyes have been dialated. Dark things seem to flow together making it hard to read and bright things seem to leave dark spots floating in front of me. This is all with my noirs on in dim light looking at darkened screens or books. It is worse in the mornings than evenings.
Have a good night.
RevDennis
Last edited on Wed Feb 1st, 2006 04:11 by RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Thu Feb 2nd, 2006 04:09 |
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Day 32- Benicar 40q6h Day 22 - Mino 50q48h Dose 11 (dose 3@50)
Good Evening,
Today has been fairly mild. I took my mino at midnight and went to bed. Slept for an hour then woke up and slept off an on the rest of the night. I was very tied today. I had all over pain mainly in the background until tonight. The back pain is getting a little stronger. I have been coughing all day with just a little plegm produced. I have had a bit of sinus drainage today. After reading some of the reports some of the mp'ers have, I feel lucky. I don't feel great but I definately have felt much worse. Watch, tomorrow I will really start hurting. I also consider myself lucky so far that I have not had any real depression yet, I have in the past, but my wife tells me I am grumpy alot. I just tell her it is because of the constant ringing in my ears. She needs to answer the phone or something.
O well, good night.
RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Fri Feb 3rd, 2006 04:43 |
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Day 33- Benicar 40q6h Day 23 - Mino 50q48h
Good evening,
Sleep last night was boken. That is becoming the norm. I have been having all over muscle pain all day today. Sometimes worse than others but pretty steady. I have been coughing a lot again today and my lungs feel a little congested. Hopefully that will clear up soon. My sinuses have been drainng a lot also. I laid down around 2 pm to take a nap and had a strange experience. I had a prickling feeling run up my back. It was like someone with hot needels attached to a rolling pin rolling it up my back. Not painful really, just very strange. It started in the lower back and went up to the middle, started back at the bottom and would go a little higher until it reached between my shoulders. It lasted about 5 minutes maybe. I was laying on my back when it happened. Anyone else have this happen? Just wondering.
Well, I'm about to get ready for bed and take the benicar and my next mino.
Have a great evening.
RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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jillian
Member in Phase 2
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Posted: Sat Feb 4th, 2006 01:15 |
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Dennis,
I too have had this pricky spine sensation, especially in the earlier parts of Phase I (I'm nearing the end of Phase I). To me it felt like my spinal fluid was slightly 'charged.' It was very weird to feel (and to describe accurately). One day it lasted a couple of hours. Now my 'pricklies' are more in my leg muscles (another one of those symptoms that I continue to forget to note in my Progress report)!!! Although at times it drives me nuts, it's not as bizarre to me as the spinal pricklies were.
'til later,
Jillian from North Dakota
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PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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RevDennis
Member in Phase 3
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Posted: Sat Feb 4th, 2006 05:07 |
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Day 34- Benicar 40q6h Day 24 - Mino 50q48h Dose 12 (dose 4@50)
Thanks Jillian,
It is hard to describe the feeling that the prickeling has. I look back at my description and someone might get the idea that it was torture, but it really wasn't, it just felt really strange.
Well, I took my mino and benicar at midnight and went to bed. I slept about an hour, woke up and had a difficult time going back to sleep. Partly uncomfortable, partly not sleepy. I finally got back to sleep about 3 am or so and got up at 6:30 am. I have been achey all over today. Moving around takes effort. I have also been short winded most of the day. My sinuses have been stuffy today also. My right ear started hurting for about an hour this afternoon and I now have a headache. Thank goodness it is benicar and bed time. I am ready. I am hoping tomorrow will be easier.
RevDennis
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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Sun Feb 5th, 2006 04:31 |
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Day 35- Benicar 40q6h Day 25 - Mino 50q48h
Good Evening,
Last night I got to bed at about 12:30am and woke up at 1:45am. I could not get back to sleep until almost 5am. I then woke up at 9am. I stayed in bed the entire time, just could not go to sleep.
The herxing was very mild today. I laid down about 2pm and took a nap for a couple of hours. Then 2 strange things happened. Back in September, prior to being on O2, I started having blackout spells when I coughed. I did that sometimes 2 or 3 times a day. Since starting MP, it has not happened. Shortly after getting up from my nap I started coughing. I sort of remember going down and woke up with my wife next to me trying to get me to talk. I'm not sure that maybe my O2 went too low during my nap so when I coughed it dropped and so did I. I have been short of breath for the past couple of days. Then a couple of hours later my blood sugar started dropping. I have had that problem for years but usually when I am heavier than I am now. I took a spoonful of honey and that took care of it. I just wanted to mention these things. I am not sure that they are directly related to MP or not. I am feeling better now but I think I will let my mino run to 72hrs this time and see if it gives me a day off. If not, I will probably go ahead and take a mino dose to make them easier. We'll see.
Well, onward and forward.
RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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RevDennis
Member in Phase 3
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Posted: Mon Feb 6th, 2006 04:38 |
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Day 36- Benicar 40q6h Day 26 - Mino 50q48h
Well, after yesterday I let my mino go to 72hrs. Today has been eventless for the most part. I still had trouble sleeping and my chest has felt congested and I have coughed a lot. Because of the congestion I have been short winded. This evening I have a headache and my neck and upper back hurts and is stiff. I will take my next mino later at midnight and I will report on it tomorrow.
Good night all.
RevDennis
____________________
01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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DMiller
Member in Phase 3
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Posted: Mon Feb 6th, 2006 12:40 |
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Dennis,
Pre-MP I too would have several coughing spells per day (mostly in the evening) and often they would cause me to almost blackout. I wouldn't lose consciousness, but everything would go black and my whole body felt both numb and tingly. It would take about a minute to get back to normal. Since starting the MP I probably have these spells about 2 or 3 times a week. I agree with your assessment that it is probably our O2 levels going too low.
Don
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Don: Sarc-Lungs dx Jul 05; DVTs, Factor 5 Leiden dx Aug 2000; Sep05: 1,25D=56 25D=19. Started MP 11/4/05; Started mino 11/11/05; Phase 2: 1/9/06; Apr06: 25D=6; Phase 3: 6/22/06; Non-MP meds: coumadin; 10% NoIRs outdoors, 40% indoors when under flourescent
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