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RevDennis
Member in Phase 3
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Posted: Sat Feb 18th, 2006 05:11 |
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Day 48- Benicar 40q6h Day 38 - Mino 50q48h
Good Evening All.
Slept a little better last night. I still wake up but am able to go back to sleep a little better. I got up this morning as usual and went to work. I am hurting all over. The burning in my chest has let up and been replaced with very sore abdominal muscles. I feel like I have been doing a lot of sit ups or crunches. well suprise, I have not been doing any exercise. It mainly hurts when I cough so I have been trying not to. My arms have been weak today also. I took a nap around 2:30 pm for a couple of hours. Taking the 75 mg has raised the overall pain level for me. It is still tolorable but it does hurt more. My teeth and gums have been more tender of late more in the evening it seems like.
Well that is it for now.
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 19th, 2006 05:19 |
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Day 49- Benicar 40q6h Day 39 - Mino 50q72h
Good Evening,
Well I goofed. I got confussed and about 30 minutes after going to bed I remembered I was supposed to take my mino last night. Since I had not split a capsule yet and I had my mask & oxygen all on and running and had stopped coughing, I decided to run this dose out to 72 hrs. So, here is my report. My sleep was broken up alot with waking every hour or two and taking a little bit to get back to sleep. I woke up at six and took my benicar and went back to bed and got up at 10am. No real herxes today. I have coughed less overall. Today has been remarkabley quiet. I will take my mino tonight before I go to bed.
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: Mon Feb 20th, 2006 05:21 |
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Day 50- Benicar 40q6h Day 40 - Mino 50q48h Dose 19 (dose 3@75)
Good Evening All,
Took my mino just before bed. I slept the usual broken sleep and got up at 6:30 am. I have had a cough today and after my shower this morning I started coughing and passed out. Fortunatly, I could tell what was happening and I was at the sink in the bathroom so I got on my knees before I blacked out. My wife heard me fall and came in and helped me up. It is a strange feeling. I don't know when I go out but as I wake up I can hear her talking and then see her but can't talk. My mind is trying to respond and then finally I can talk but sometimes what comes out does not make sence. O well. It seems like I start coughing and then can't catch my breath and I go down. Not a good feeling.
After noon the all over body herxing started again. It is like a friend that is always there. The absence of it yesterday lets me know it is related to mp so that is good. Sometimes you wonder if it is just the disease itself. Overall it has not been too bad of a day. My sinuses have been going wild again today.
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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sunflower
Member in Phase 2/3
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Posted: Mon Feb 20th, 2006 08:15 |
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hi rev,
my sister has asthma and very bad allergies, and once had an infection that caused her to cough so much that she couldn't breathe and passed out, also. please be careful when starting to cough like that, and sit or lie down if you can to avoid falling and hurting yourself. i've had a few episodes since starting the MP where i've come close to passing out, but made sure i sat down til the feeling passed. nothing but fun and games killing these critters, huh . 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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Foundation Staff.
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| Joined: | Sun Jul 11th, 2004 |
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Posted: Mon Feb 20th, 2006 17:02 |
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Rev Dennis,
People with lung disease can pass out with a coughing spell. This is called - in medical terms - cough syncope.
It was good that you felt it coming and went down because lowering your elevation helps in two ways:
1) it may allow the normal flow of blood to the brain to resume, avoiding fainting and
2) if you fall, you won't have far to go.
If you happen to be driving when a coughing spell hits, it's a good idea to pull off the road, according to this report from Mayo Clinic.
BelindaLast edited on Mon Feb 20th, 2006 20:24 by Foundation Staff.
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RevDennis
Member in Phase 3
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Posted: Tue Feb 21st, 2006 05:55 |
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Day 51- Benicar 40q6h Day 41 - Mino 50q48h
Good Evening All.
Slept better last night. I didn't wake up until after 4 am. Then I got up at at my usual time and went to work. I ran out of energy and brain fog set in about noon. My stomach muscles hurt today along with my shoulders and arms. I have also had an unproductive cough that leaves me light headed. My sinuses are also stuffy. I took a nap after I got home from work at 5:30. The herxes continue but they are not too strong.
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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RevDennis
Member in Phase 3
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Posted: Wed Feb 22nd, 2006 05:39 |
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Day 52- Benicar 40q6h Day 42 - Mino 50q48h Dose 20 (dose 4@75)
Good Evening All.
Slept off and on last night. I got up and went to work as normal. By early afternoon I had fizzeled again. My stomach muscles have been hurting all day and especially when I cough. I have been very short winded today. My arms feel like I have weights attached to them. I am achy all over and moving around is a real effort. Fortunatly I am able to sit around and not move much all day. There must be some bug killing going on and that is a good thing.
Well, 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: Thu Feb 23rd, 2006 04:10 |
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Day 53- Benicar 40q6h Day 43 - Mino 75q48h
Good Evening.
I am happy tonight because I am off tomorrow and can sleep in.` I slept better last nigh waking up only once that I can remember and when the alarm went off this morning I was sleeping so well. I got up and went to work.  I am still having coughing problems, may just be the sarcoid, and shortness of breath. I have the usual all over pain and heavyness in my arms. And again I ran out of energy after noon. I ended up coming home early today because my brain just refused to operate. I came home at three and went to bed and took a glorious nap. That recharged my batteries and cleared up the fog. I will be taking my 5th dose at 75 mg tonight. I will probably do that one more time then ramp it to 100 if everything stays the same. I just noticed that there was a mistake on my header. I didn't change it to 75mg of mino although on my dose number it was right. O 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: Fri Feb 24th, 2006 05:13 |
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Day 54- Benicar 40q6h Day 44 - Mino 75q48h Dose 21(dose 5@75)
Good Evening All.
Well I fixed my intro header to reflect my 75 of mino. I have had 5 doses at that level. 4 at 48h and 1 at 72. Today is day one of the 5th cycle of 75mg. It is pretty consistent now on the first day I herx alot. All over aches and pains over my muscles. I slept off and on last night with some night sweating. I had a lot of that when I was on prednisone and I have noticed it coming back during this dose level. It is not that it is warm in the house. We turn down the central air at night, I have a ceiling fan on above the bed and then I have a seperate fan blowing on me at the side of the bed. I don't know what I will do when I get well. With the fans, CPAP, O2 concentrator , and ringing in my ears gone it may be too quiet for me to sleep. The herxes were fairly strong today and consistent. I was off so I was pretty lazy. I got out of bed about 10 am did some work for the church I needed to do then laid down after lunch and didn't get up til 5pm. I have been up since then watching the olympics.
Back to bed in a little bit.
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: Sat Feb 25th, 2006 05:28 |
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Day 55- Benicar 40q6h Day 45 - Mino 75q48h
Good Evening,
Well, another semi lazy day. I did not sleep well last night. I got up at my 6:30 time and went to work for half a day. I did well with the usual achey muscles. My stomach muscles are still sore and I had some pain in my right chest today. That is a first. It was like a stabbing pain and lasted about 30 minutes. Tonight I am just trired and looking forward to bed. I will take another dose tonight. I am not having much of a herx right now, but I am sure that will change in the morning.
Have a good 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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RevDennis
Member in Phase 3
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Posted: Sun Feb 26th, 2006 04:22 |
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Day 56- Benicar 40q6h Day 46 - Mino 75q48h Dose 22(dose 6@75)
Good Evening All.
Today was a usual first day of the cycle. I slept poorly and kept my wife awake alot last night coughing. I have been having muscle pain all over today especially in my upper back and neck and shoulders. I have been coughing all day and my stomach muscles have hurt like knife stabs when I cought. I have had a dull preasure in my head all day. Not quite a headache but just there under the surface. My sinuses have been clogged all day. Not a plesant day at all. I got up this morning about 10 am and sat next to my bed in total darkness for 2 hrs before I got dressed and went into the rest of the house. Any light at all was bothering me. It is amazing how well I can now see in the dark. I am looking forward to going to bed tonight. My day 2s are usually a little better. We will see.
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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Morris W. Milnes
Member
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Posted: Sun Feb 26th, 2006 04:39 |
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The seeing in the dark is incredible. I went outside at 3 AM to clean out a drier vent and to me it was like daylight just from the streetlight down the street. That's the only Herx I miss.
Morris
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
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Posted: Sun Feb 26th, 2006 04:55 |
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... my day 2s are usually a little better.
Rev: Phase I and Mod PhII have a nice break every other day most the time. I could make it through most anything knowing the next day usually eased up some.
Morris: Agreed. I'm still seeing quite well the dark. Eyes not as sensitive now, but still prefer it.
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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 Feb 27th, 2006 05:08 |
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Day 57- Benicar 40q6h Day 47 - Mino 75q48h
Thanks Morris and Jrfoutin,
I always enjoy hearing from fellow MPers. I went to bed last night a little after midnight and woke up around 3 am. I could not go back to sleep. I just laid there quietly because I didn't want to wake my wife up. I got up at 6:30 to get ready for church. I have had a steady cough today and part of the day it has felt like someone hit me in the stomach. Pretty uncomfortable. I took an afternoon nap for a couple of hours. Woke up on my own. I have been having moderate herxing this evening in the usual body aches all over. I'm pretty use to that. My mind has been a lot more clear today. My biggest struggle this afternoon has been that as I cough I get light headed and I don't want to pass out. I preached tonight trying to keep my train of thought with my coughing spells and trying to keep clear headed. Not that easy. My wife said I pulled it off ok. It was a struggle. Well, That's it for tonight.
Have a great evening everyone.
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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DNStog
Moderator
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Posted: Mon Feb 27th, 2006 12:26 |
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Rev Dennis,
Reaching 75mg Mino on Phase I gave me my strongest of herx...fever, flu like symptoms, etc. I slept for almost three days solid, thankfully, which got me through the roughest herxing.
Wishing you well, gently!
Donna, still cruising ~~~~
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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RevDennis
Member in Phase 3
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Posted: Tue Feb 28th, 2006 04:29 |
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Day 58- Benicar 40q6h Day 48 - Mino 100q48h Dose 23(dose 1@100)
Good Evening.
I took my dose at midnight and went to bed. I slept the usual off and on last night. I got up this morning and did not feel too bad. Went to work as usual, then about 1 pm my brain decided to check out and leave. The fog hit hard. I ended up going home at 3pm. I tried to lay down and take a nap but something strange happened. I hooked my O2 up to my CPAP mask like always put it on and laid down. I could not remain laying down. I kept feeling like I was suffocating. I ended up propping up some pillows and laying on them. This is difficult because I have a water bed. I was able to rest some but could not sleep. I hope this changes because I really do want to sleep tonight. I got up around 5 pm and since then I feel like I have the flu. I hurt all over and I am coughing and bringing up phlegm. I have not done anything to stop or slow the herxes because I want to see what happens but they have probably been on the boarder of tolerable for me. I will have my mino ready tomorrow incase they get carried away. I am hoping that tomorrow will be easier but since this is my first dose at this level there is no way of knowing.
I appreciate all the encouraging words from everyone both here and privately. It helps to know that we are not alone and that there is light at the end of this long tunnel. It is hard for me to believe that back in 2000 I didn't know anything about sarcoid and felt fine and when I started this 58 days ago I was functionally disabled struggling to breath with my only hope from my specialist being a lung transplant. It is nice to be back in control. Thank you Trever, Meg, Barbara, Belinda and all of you that have put MP together and worked to get it out and share it with us. May you someday get the recognition and acalades you truely deserve.
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
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue Feb 28th, 2006 06:10 |
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Thanks RevDennis
Dont hesitate to adjust your meds to achieve tolerable enough herx to get some sleep. it is all necessary to your healing.
Take care, 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: Wed Mar 1st, 2006 04:20 |
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Day 59- Benicar 40q6h Day 49 - Mino 100q48h
Good Evening and thanks Barb.
Well, I slept ok last night. I woke up several times and got up once to go to bathroom. That was a mistake. My bathroom is only about 15 to 20 steps away but I didn't have my O2 on to go. I could not breath well and all I could think was to try not to fall. I made it but when I got back to bed it took me about 30 minutes to stop coughing, get my breathing back under control and my heart rate back down. When the alarm went off this morning I did not get up. I had started herxing again and I did not know what to expect. The herxing has been fairly steady today, not over powering but definately working. I have felt like I am suffering from the flue all day. Again, when I tried to lay down during the day, I could not because I felt like I was sufficating. Just like yesterday. It did not effect me last night though. I hope this changes because I like my daytime naps. They help me catch up because of my broken sleep pattern at night. On top of the over all herx I have had some specific pain shooting through my neck and head. It just comes and goes. My ears are clogged today also with the ringing louder than normal.
Well, I will take my second dose of 100 mino tonight.
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
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Wed Mar 1st, 2006 05:30 |
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Thanks RevDennis
If you will adjust your meds some, it will give yourself some relief, and also will give you some experience in adjusting your meds to take forth to Phase 2. If possible, it is preferable to have some experience with adjusting the meds before going to Phase 2.
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: Thu Mar 2nd, 2006 05:08 |
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Day 60- Benicar 40q6h Day 50 - Mino 100q48h Dose 24(dose 2@100)
Thanks Barb.
I woke up at 2:40 am and could not get back to sleep. I stayed in bed until time to get up for work. My knees hurt some during the night but not too bad. I did not feel too bad when I went to work. I was tired and had the usual achey feeling. I was coughing quite a bit. I stayed at work all day today, until 5 pm. I had about 45 minute that I could lay down before going to preach at church. It felt good and I really didn't want to get up, but I did. When I got home the coughing picked up again along with the strong body aches. I also started getting sick at my stomach. I seperated a mino cap and took 25mg. The stomach problem went away in about 15 minutes and after about 30 minutes the body herxing let up some. I am still coughing a bit. This is day one of the cycle so I have more of the 25 mg mino ready in case I need it. The first and second day of the first dose of 100 was too strong. I should have done something to ease it but the brain fog was so strong I just couldn't think straight. If you have seen the movie 50 first dates, there is a charecter my wife started compairing me to. I think he was called 7 second Tom or something. Every 7 seconds his memory wiped and he started over. That is about what was happening. I could not carry on a conversation that made any sence and I kept asking the same questions. I didn't even realize the sarcoid had effected my brain. Boy, it is some nasty stuff.
Have a great evening 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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