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RevDennis
Member in Phase 3
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Posted: Tue Feb 7th, 2006 05:10 |
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Day 37- Benicar 40q6h Day 27 - Mino 50q48h Dose 13 (dose 5@50)
Good Evening,
Well I took my mino at midnight and went to bed. I slept until about 1:30 am then off and on until the alarm went off at 6:30am. I decided to stay home from work today so I stayed in my cave in bed sleeping off and on until 2 pm. I got up and the just sat around the rest of the day. I have been very short winded with with a number of coughing spells like Don mentioned in his post to me. I had some pain mainly in my hands and feet. A lot of brain fog this morning but it cleared up by the time I got up.
All in all, very uneventful today.
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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Aunt Diana
Moderator
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Posted: Tue Feb 7th, 2006 06:40 |
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Hello Rev Dennis
I always read your posts and empathise with your positions....since I am pretty much at the same spot as you are.
My only question is...do you take anything to help you sleep? I have been relying on sleep meds for a long time and still need them, but something very dramatic has changed in my sleeping patterns since I've been on the protocol.
I have been taking ambien 10-15mg to allow me to sleep for years. Then when I woke up a few hours later I would have to take another 5 mg. tablet in order to fall back to sleep. Before Ambien I simply didn't sleep....and was in a constant state of fatigue and discomfort. With the Ambien I was able to sleep but I never felt as rested as if I had had normal sleep.
I think sleep--good sleep--in which one wakes up refreshed...is the most curative part of this program. That started to happen for me a few weeks after I started the MP....I found myself actually falling asleep in a chair....or falling back to sleep if I woke up. My dreaming has taken on a different nature and I believe that means something, curatively.
Now I may need to take the Ambien to "fall asleep" but once there I stay there....and it is more normal and I feel more refreshed when I wake up...I'm also able to fall back asleep easily and resume my dreams where they left off.
I am retired so I don't have to get up at any particular time, but it was always in my nature to wake up early and get going, to work the "kinks" out.
Recently I've been sleeping til 2pm....I'll wake up at 7 or so (benicar alarm) and pull the covers back up and sleep again till the alarm goes off again , Today I got out of bed at 2pm....totally unlike my past regimen...but I think it is good for my immune system to have that time to work on its own.
I guess I'm sharing this with you because I would encourage you to ask your doctor for a mild sleep medication....like ambien...or whatever they recommend. You may be surprised...at the depth of sleep you can attain.
It is hard for a hard minded "yankee" such as myself, to give in to this slothful habit of "sleeping in" but I believe it is helping my progress immensely.
Best wishes
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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Aussie Barb
Research Team
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Posted: Tue Feb 7th, 2006 07:09 |
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RevDennis
for some information see INSOMNIA post
and I have insomnia and fatigue. What should I do?
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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RevDennis
Member in Phase 3
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Posted: Wed Feb 8th, 2006 04:33 |
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Day 38- Benicar 40q6h Day 28 - Mino 50q48h
Thanks Aussi Barb, Aunt Diana and others that PM'd me,
My sleep has fallen into a pattern and basically is not much at night. That is ok for now, I can nap when I need to so that works. I am sure this will change as mp deals with my bugs more.
The day started with being sleepy and brain fog. By noon it moved into achey all over. My hands and feet hurt a little stronger than anywhere else until this evening when my left hip started hurting. I am still very short winded which is limiting my movement and I keep having coughing spells which are usually productive. I try to drink a lot of water to keep the congestion loose so it can move out.
I am really sleepy tonight. Lets see how long I can stay asleep.
BTW, I am putting up a new picture tonight. I had it taken Sunday by our church photographer. I have lost about 55 pounds since May when I came off predisone so I am at 220 now. I am working to loose about 30 or so more.
Good night all.
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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coolbeans
Health Professional
| Joined: | Tue Jan 31st, 2006 |
| Location: | USA |
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Posted: Wed Feb 8th, 2006 10:05 |
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Looking good, Rev.
jb
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RA FM allergy asthma GERD MCS FBD IBS lichensclerosus 125D59 Ph1Jun06 ModPh2Aug06 Ph2Jan07 Ph3Jun07 tramadol diazepam NoIRs lite exp r/t work cover up 25D8
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RevDennis
Member in Phase 3
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Posted: Thu Feb 9th, 2006 04:42 |
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Day 39- Benicar 40q6h Day 29 - Mino 50q48h Dose 14 (dose 6@50)
Thanks jb. Good evening all.
While my sleep was still broken, I slept better last night and when the alarm went off this morning I did not want to get up. I have been sleepy all day. I have also been herxing all day all over. My right wrist has joined in again and is tender. My sinuses have let loose today and are constantly draining. I have been sneezing all day and coughing. This has been a usual first day of mino for me. Tomorrow should be a little easier. We will see how my prediction goes.
Good night all and may your good dreams come true.
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 Feb 10th, 2006 05:19 |
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Day 40- Benicar 40q6h Day 30 - Mino 50q48h
Good evening,
Well, I was half right on my prediction. The day has been a steady arthritic pain all over all day. Not real bad, but there none the less. Last night was my problem. I got to bed at midnight and after coughing my head off for a while I went to sleep. Slept good until 2 am. I woke up needing needing to go to the rest room. I try not to do that because it can become a habit but I went to get up. That is when I realized how much pain I was in. Laying down, I just felt my hands and feet a little painful. When I got up there was not a muscle or joint that did not scream at me. I could barely walk to the bathroom. I then got back in bed and as I laid in bed still I did not hurt. It was only when I moved. I'm no dummy, I didn't move any more. I also did not sleep anymore. When I got up at 6:30am I had a headache with the body pain, I was ready to take my benicare and to take an added mino. I took the benicar and sat next to my bed in my cave to see if the herx was going to let up. It did after about 20 minutes and has just been mild. This may be why I have not been sleeping. I didn't realize I was in pain because I have not been getting up. I have to take my cpap mask off and go without o2 so I am afraid of falling or passing out. I may just need to have a 25mg of mino ready to ease the herx so that I can sleep.I had noticed that the ringing in my ears has been louder at night. I woke up the other night and thought my o2 concentrator was making a noise, then I realized it was just inside my head.
I had thought about raising my dose to 75 but I think I will wait.
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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Aussie Barb
Research Team
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Posted: Fri Feb 10th, 2006 07:17 |
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RevDennis
You may wish to try using the Benicar and / or the lowered dose of mino more frequently to keep all tolerable.. you are in this for the long haul, and gaining experience in adjusting the meds for the better comfort will stand you in good stead.
Let us know if you have any questions. all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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RevDennis
Member in Phase 3
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Posted: Sat Feb 11th, 2006 04:15 |
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Day 41- Benicar 40q6h Day 31 - Mino 50q48h Dose 15 (dose 7@50)
Good Evening All,
Well Last night and today has not been bad. Woke up a number of times last night. I tested my muscles and joints to see if the herxing was like the night before and it was not. My wrist was tender and so were my feet. I got up this morning as usual and went to work for half a day, usual for Fridays, and then came home. Herxing has been mild today and in the background. Sinuses are draining again. But, overall an easy day, O, did I mention I took a 3 hr nap this afternoon? That was nice. We will see what tonight holds.
If you are reading these and you have not started the MP yet, don't let the reports scare you. We are purposefully reporting our herxes and placing the information into a record. Most of these herx pains many of us experienced as part of the progress of the disease to get to where we are at. I know that I personally am willing to go through them again knowing that I am getting rid of this cursed disease this time. You can take this as slow as you need to. It took you years to get into the condition you are now in and it will take a while to get well.
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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RevDennis
Member in Phase 3
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Posted: Sun Feb 12th, 2006 06:30 |
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Day 42- Benicar 40q6h Day 32 - Mino 50q48h
Good Evening,
Today has been mild. I did sleep alot, that just makes up for the sleep I loose at night, I think. My herxing has been muscular pain all over at a low level. Not much else to report.
I have had a bit of a cough and wheeze in my chest. It occurs whenever I walk from room to room or get ready for bed. it is a bit annoying. but such is life.
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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Foundation Staff.
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Posted: Sun Feb 12th, 2006 17:01 |
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RevDennis,
You might want to try some of our Breathing Tips. At least if you are familiar with them, you will have then on hand as tools in case you want to use them.
Best to you,
Belinda
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RevDennis
Member in Phase 3
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Posted: Mon Feb 13th, 2006 05:14 |
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Day 43- Benicar 40q6h Day 33 - Mino 50q48h Dose 16 (dose 8@50)
Good evening.
Sleep was broken as usual but I did sleep a little better. I tried my muscles when I woke during the night and they were painful. I went through my different muscle groups flexing them to try and get the pain and stiffness down some and it seemed to work some. I fell back to sleep each time. I got up this morning and was fine. No real pain, just short winded and coughing. I took a nap this afternoon and woke up very tired. It is hard to explain but since then I have just felt "off". My back and ribs are hurting right now but that has just started, I just have not felt well this afternoon. Probably a brain herx.
I had to fix my indoor NOIR for the 3rd time today. I will call tomorrow to get them replaced. The right arm on them just keeps breaking. Thank goodness for super glue.
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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Aussie Barb
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Posted: Mon Feb 13th, 2006 05:57 |
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Thanks RevDennis
There are some methods of glasses repair in this topic: to hold you over till you have the glasses replaced. PROTECTING YOUR EYES
If you need to, some extra Benicar or mino 25mg may be helpful to you at any time..
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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RevDennis
Member in Phase 3
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Posted: Tue Feb 14th, 2006 05:36 |
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Day 44- Benicar 40q6h Day 34 - Mino 50q48h
Thanks Belinda and Barb for the info.
Like I said, my noirs broke yesterday so I glued them again. I had to wait for them to completely dry so I could not use them. Outside was not a problem because I had my 2% glasses. But inside at church, I could not see well enough to read my notes for my sermon so I had to go without. I didn't notice anything yesterday except my eyes felt a little tired. When I went to get up this morning I could not wake up. I took my benicar and fell back to sleep. I woke up at noon and took my benicar and fell asleep again. I woke up about 4 hrs later and forced myself to get up. I read Barbs post and followed the link and read that this was from the light so I went ahead and took extra benicar to try and break it. It helped and I have been up since. I am still tired but I feel much better, back to my regular muscular pain. I am happy again.
I plan on upping my mino tonight and my benicar will be normal again. I was going to do it last Saturday but didn't want to have a problem on Sunday so I am glad I waited.
Well, talk to you all tomorrow.
RevDennis
Last edited on Tue Feb 14th, 2006 05:36 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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Foundation Staff.
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Posted: Tue Feb 14th, 2006 07:16 |
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Dennis,
At some point, you may be interested in obtaining a pair of Bolle frames with Bolle 100 lenses. They are comparable to the NoIR 10% you are using as far as protection, but the frames are ruggedly built for use in outdoor sports.
I like the fact that Bolle frames come in styles that hug the face, with grips on the nose piece and behind the ears that make them stay put. Sometimes you can find them online on sale. Just be sure you get the Bolle 100 dark amber lenses.
Belinda
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jillian
Member in Phase 2
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Posted: Tue Feb 14th, 2006 23:41 |
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For Noir repairs, if worst comes to worst, good old duck tape on the inside and outside of the joint works. Of course, then you can't close the joint so that's a bit of a pain, but it works in an emergency... Duck tape even comes in colors now so we could be quite creative
'til later,
Jillian from North Dakota
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PrimryDX-PulmoSarc79,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-. Noirs & total light control in house.
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RevDennis
Member in Phase 3
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Posted: Wed Feb 15th, 2006 04:44 |
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Day 45- Benicar 40q6h Day 35 - Mino 50q48h Dose 17 (dose 1@75)
Good Evening All.
I should be getting my new glasses by the end of the week. I have become an expert with super glue keeping them together. I upped my dose to 75mg now. For some reason that sounds like a major marker to me. I am excited about it. I have come this far and I have not died from a herx or any other bad things. Have I felt bad . . . Yes, is it worth it? Yes!
I did not sleep well last night but what's new. I got up this morning feeling ok. No major pain and awake compaired to yesterday. I did fine until about 1 pm when all my energy just drained out of me and my brain went cloudy. I was at work and I hope I don't have a mark on my forhead from hitting the computer monitor as I kept falling asleep.
Then when I came home at about 5:30pm I had a coughing spell. It lasted about 20 minutes and quite a bit of phlegm came out of my lungs. That is not usual. It stopped as suddenly as it started and just left my chest burning for a little bit. I just feel the usual acheyness tonight in my back and shoulders.
Well, now it is time almost for bed again. Maybe I will sleep better tonight.
Have a good 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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RevDennis
Member in Phase 3
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Posted: Thu Feb 16th, 2006 04:39 |
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Day 46- Benicar 40q6h Day 36 - Mino 50q48h
Good Evening All.
Well, day 2 of my first 75mg cycle went ok. Went to bed and slept for about 3 hours well. Woke up with muscle pain and was awake for 2 hours before I went back to sleep. Went to work as normal and got tired very quickly. I coughed a bit again today and had some chest pain in the upper left muscles toward the collar bone. My arm muscles are very sore this evening and my back is hurting. All is tolerable and just a reminder that the mp is working. I have not notice an increase in pain, just some of it is different locations. Well thats it for tonight.
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 17th, 2006 05:55 |
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Day 47- Benicar 40q6h Day 37 - Mino 50q48h Dose 18 (dose 2@75)
Good Evening All.
I will try this again. I had it all finished and it just disappeared. O well, I'll see if I can remember what I said. I slept at the beginning of the night then woke up, was awake for a little over 2 hours and went back to sleep. I got up for work at the usual time. I was fine then with the usual muscle pain except for one thing which I will mention in a little bit. I did have a cough still when I got up and have had this all day. This has made me very short winded today. About 10 am I lost all energy and went foggy mentally. I went home at noon and laid down at 2 pm and slept until about 4:30. Since that time I have had a lot of muscle pain all over. There is one pain I have had all last night and all day today. It is not intolerable but just there. I have a burning sensation in my chest on the left side a little above my right pectorial muscle. It is worse right after I cough. It is like what I had in October and my specialist dr called it pluracy. I am wondering if there is a lymph node in that area. I know that all of the lymph nodes in my chest had sarcoid involvement. My x-rays show me as advanced stage 4.
Anyway, things are all tolerable, just the usual not feeling great. But I know that there is coming a time in the future when that will change.
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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RevDennis
Member in Phase 3
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Posted: Fri Feb 17th, 2006 14:15 |
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Just a correction. The burning is above my left pectorial muscle. I did look ap a lymph node diagram after I finished last night and there are some in that area. It is still burning this morning. I told you I was in a fog last night.
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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