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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Posted: Thu Mar 2nd, 2006 05:18 |
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Thanks RevDennis
That is exactly what does happen. the herx can take you down to where you cannot think to take care of yourself by adjusting the meds..
so, just like Life... . it pays to be thinking and prepared ahead of time before this situation arises.
Be prepared to adjust meds if symptoms are holding you back from breathing, sleeping etc.. and ask your Wife or support person to please remind you that it may be time to take the meds???
see Tools to check:
This is the sort of practice that can be happening and experience gained before getting 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 13:58 |
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Thanks Barb,
It has been a rough night. I went to bed at midnight and woke up as usual at about 2:30am hurting pretty bad. I took another dose of 25mg of mino. The herxing slowed and I went back to sleep. Then at 4:30 I woke up with my entire body just screaming. Every joint and muscle was hurting and my head was throbbing. I got up and sat beside the bed with just my O2 for a few minutes to catch my breath. I then went and took 40mg of benicar to see if that would help. In about 15 minutes it started to ease. The pain did not completely go away but it at least went down to tolorable. I went back to bed but didn't go to sleep. At my normal beni time at 6:30 I was starting to hurt again so I went ahead and took another benicar. I also took tylenol for my headache. Right now everything is ok but my head still hurts some. Tight in the neck really. I plan on not taking my scheduled 100 mino dose tonight and let it run out a third day to let it go down to zero. Does that sound thike a good idea?
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: Thu Mar 2nd, 2006 18:49 |
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RevDennis
The Benicar Q4H if it is necessary may bring you enough relief when you are symptomatic without requiring mino 25mg. Trying it will help you to know this.
My Herxheimer reaction is too strong. What should I do?
Trying 3 day mino dosing is fine. The time to be saying whether the third day is a good idea is when you are actually doing it and the herx is tolerable. dont push past tolerable to get to a set time though..
see I'm eager to get well. How can I speed up my progress on the MP?
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: Fri Mar 3rd, 2006 05:13 |
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Day 61- Benicar 40q6h Day 51 - Mino 100q48h
Thanks Barb.
Good Evening All.
Well I already reported about my night. One word . . . OUCH! I stayed home today not knowing what to expect. Fortunatly, the herxing stayed under control. I felt like I got hit by a truck. I took my benicar back on schedule at noon. I laid down about 2 pm and took a nap. I woke up at 4:30 and was still tired. I drank some water and tried to lay back down. I was still real tired. I had a repeat of the problem the other day. I felt like I was suffocating and could not stay laying down. It was about 5:15 so I went ahead ant took another Benicar dose a little early to see if this helped. I was asleep by 6 and woke up at 8pm. I got up then and feel ok, just the basic achey all over feeling and tight neck muscles. Everything is back under control. I will probably waite and see what happens tonight and not take another mino 100 dose. So far, my day three on every dose level has been easy. will see if it is true here also. I could use a day off. 
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: Sat Mar 4th, 2006 04:30 |
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Day 62- Benicar 40q6h Day 52 - Mino 100q48h
Good Evening.
Well, I am still herxing today and it is day three of the cycle. The herx is in my feet, they are tingling, and tender, in my left arm and hand, it is tingly and weak, and in my neck and head. It is tight and hurts. I have had a dull headache all day. I also have been coughing all day and coughing up phlem. Because of this my chest has been tight and very short winded. I have come close to passing out several times. My sleep is very fractured. I sleep mybe two hours and then wake up. That happened last night. I couldn't go back to sleep so I took 20mg of benicar at about 3:30am. About 4 am I went back to sleep and woke up again at 6am. I got up at 6:30, too my regular dose of 40 mg benicar and got up and went to work. I have just felt washed out with everything else today. I tried to take a nap and only slept for an hour and was so tired and couldn't breath and get comfortable so I took 20 mg of benicar and slept for about an hour and a half. I then sat in the dark for an hour before I gave up and went into the rest of the family. I am supposed to take my next dose of mino tonight. We will see what happens this time.
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 Mar 5th, 2006 05:10 |
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Day 63- Benicar 40q6h Day 53 - Mino 100q48h Dose 25(dose 3@100)
Good Evening.
Well, Today has been a surpise. I went to bed at about 12:30 this morning. woke up at 2:30 am as usual then went back to sleep and woke up at 4 am. I couldn't get back to sleep so I got up at about 5 and did a little computer stuff and watched tv. Through out the day my herxing has been very low. The only problem I have had is a constant cough. It produces some dark phlegm. I have coughed so much that my chest is sore and so is my stomach. It makes me very short of breath. It calmed a little about 30 minutes ago, but now I am starting to have the all over achey flu symptoms. It will probably ease with my midnight benicar dose. Today has been pretty good and I am thankful for it.
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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Posted: Sun Mar 5th, 2006 05:13 |
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RevDennis
If you'd like to be making your Phase 2 preparations, see FAQs
How do I know if I'm ready for phase two?
Where can I find phase two and three?
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: Mon Mar 6th, 2006 04:28 |
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Day 64- Benicar 40q6h Day 54 - Mino 100q48h
Good Evening.
I went to bed last night at a little after midnight and slept til 3 am. Wow, it has been a while since I slept 3 hours in a row. I then went back to sleep and slept till 4:30 and then off and on until I got up at 6:30 am.The only noticable herx today has been my cough. It is still there and I am still bringing up phlegm. This evening my chest and back hurt and feel tight but I think that is from coughing so much. I will take another mino dose tonight and see what happens.
Thanks Barb for your note. I sent for the questionaire and Have it already. I will see what this next cycle is like before I send it in.
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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mhbabb
Member
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Posted: Mon Mar 6th, 2006 17:34 |
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Rebdennis-
I just wanted you to know how helpful it has been for me to share your experiences as you go through this process. I myself started on Benicar 40q6h a little over two weeks ago and added mino 25q48h yesterday.
Like you, I was really unsure at first whether it was the mino causing me to herx, or just the old sarc itself when the headache, pressure behind my eyes, light sensitivity, ringing in the ears, irritability, pain in knees, ants crawling all over my skin, roaming pains in my toes and hands, swlleing and soreness in my palms ... when all the old symptoms came out to play. Especially since I am just two weeks off of qvar, an inhaled steriod.
However, reading your day to day struggle has convinced me that mino IS working and since I haven't experienced many of these symptoms in months, it simply must be the mino, and I am herxing! Who ever thought I'd be applauding experiencing symptoms that almost drove me insane for two years? (And my doctors were telling me all that time that I was crazy.. that these symptoms simply do NOT add up to anything other than psychiatric problems.)
So thank you so much for sharing this with us all. Know that you are... please excuse the analogy, but it fits... carrying the cross for more folks than you will ever know. You are, and will remain, in my thoughts and prayers.
Martin Babb
Seattle, WA
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Sarc:07/05, NOIR 09/05, D test 02/06: D 1.25= 60 D 25 = 14, lung/nerve/cns involvement,anxiety, tachycardia, cogn. probs, mononueropathy, sweats, face numb, - Benicar 40q6h 2/17/06, mino 100 mg q 48 h 03/28/06 phase II 09/06/06
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RevDennis
Member in Phase 3
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Posted: Tue Mar 7th, 2006 05:45 |
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Day 65- Benicar 40q6h Day 55 - Mino 100q48h Dose 26(dose 4@100)
Thanks for your comments Martin and Good Evening Everyone.
I took my mino at midnight and went to bed. I slept until 3:30, looked at the clock and went back to sleep and slept until 6am. That is the best I have done in a long time. I got up this morning feeling pretty good but a little bit of that lingering cough. I did well until about 1 pm. Then brain fog set in. That is bad because I am working on putting together the annual financials for some companies so I can get their Federal taxes ready. I ended up leaving work and coming home and brnging the printouts with me. I went to bed at 2pm and did not wake up until 5:30pm. That is amazing because I have not been able to sleep longer than 2 hours at a time. I am a little achey but nothing major at all. I worked on paper work again tonight and got mentally tired after about 2 hours so I stopped. All in all it has been a pretty good day.
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: Wed Mar 8th, 2006 04:39 |
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Day 66- Benicar 40q6h Day 56 - Mino 100q48h
Good Evening All.
Well, I didn't sleep as well last night as I did the night before but better than I had been sleeping. My herx was very low level today with the usual cough which gets worse at night. I am also starting to hurt in my shoulders and neck with a slight head ache. Other than these my herxing seems to have let up alot. I will take another mino dose tonight before bed and see what happens on this cycle. I sent back my questionaire a few minutes ago. I guess I need to check my calandar and make an appointment with my doc.
Onward and forward. 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 Mar 9th, 2006 03:39 |
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Day 67- Benicar 40q6h Day 57 - Mino 100q48h Dose 27(dose 5@100)
Good Evening.
I will continue to post here until I see my doctor and get my prescription and start phase 2. I am excited about it. It is kinda like when I had my tonsils out in third grade. They promised me ice cream and pop cicles. They came through with the goodies, I just didn't want them, my throat hurt. I have a lot of reading to do over the next week.
My sleep was not very good last night. I kept waking up every hour or so. I got up this morning and felt ok, no major herx. The cough I have become used to and a small head ache. Tonight my feet are burning, my left chest is hurting and my shoulders are aching and feeling heavy. I am looking forward to going to bed tonight plus I am off work tomorrow.
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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RevDennis
Member in Phase 3
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Posted: Fri Mar 10th, 2006 05:36 |
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Day 68- Benicar 40q6h Day 58 - Mino 100q48h
Good Evening All.
Was awake a lot last night. Aches and pains all over. Very low level of herxe all over today. I laid down at 2 pm because I was a little tired and didn't wake up until 6pm. It really supprised me. I have been lathargic all evening. I still have a bit of a cough. Nothing new happening.
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: Sat Mar 11th, 2006 04:20 |
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Day 69- Benicar 40q6h Day 59 - Mino 100q48h Dose 28(dose 6@100)
Good Evening All,
Well I made my appointment with my Dr today for Friday. It is a 6 hr round trip drive so I will be changing my benicar schedule for it because of the sun exposure. I will get my prescriptions for my phase 2 then.
I took my mino dose last night. Slept so so. I woke up several times and my sleep was restless and not good and deep. Part of that is because of coughing fits I keep having. I sat next to the bed before laying down and coughed solid for 15 minutes. It is bringing phlem up. It makes my whole body sore and makes my chest feel tight and burn. I got up at normal time and went to work. The only real herx was the continued cough and some sinus congestion. Got off at noon and after lunch I laid down for a couple of hours. Again, it was restless sleep. I was very tired when I woke up and very light sensitive. I sat in the dark about an hour after I got up just listenng to an audio book. I am still light sensitive and I am very tired tonight. I am having some herxing in my ribs and upper back and neck. My head sort of feels like it is in a vise. I took some tylenol a little while ago for it.
Nothing major happening. Still have the cough trying to clear my lungs.
Have a great 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 Mar 12th, 2006 05:20 |
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Day 70- Benicar 40q6h Day 60 - Mino 100q48h
Good Evening All.
I slept ok last night but woke up at about 6:15am short winded. I had to go ahead and get up because I started coughing. Outside of a cough, the herxing is low level right now. Just some tingling in my feet, loud ringing in ears and pain in upper back and neck. I will be glad when I see my doctor so I can move on and start herxing again. Can't believe I said that, but no pain, no gain, right? Well that's all for tonight.
Have a great 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: Mon Mar 13th, 2006 04:57 |
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Day 71- Benicar 40q6h Day 61 - Mino 100q48h Dose 29(dose 7@100)
Good Evening.
Well, I think can say that I am sleeping a little better now. I am waking up during the night still but I am falling back asleep fairly quickly.
When I get up I am short winded and cough alot. Very light headed at first. I felt ok today but have a low energy level. I had some mouth and teeth pain for about 30 minutes earlier today and then just odd ball pains here and there. Just quick ones that last a minute or two and then go away.
Until tomorrow,
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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RevDennis
Member in Phase 3
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Posted: Tue Mar 14th, 2006 06:42 |
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Day 72- Benicar 40q6h Day 62 - Mino 100q48h
Good Evening,
I slept pretty good last night untill about 5 am. Then I started sneezing. Try sneezing with a cpap nasal mask and O2 on. My sinuses completely closed and I could not breath any more. I ended up getting up early. My sinuses have been giving me problems all day with runny nose and sneezing. That and heartburn were the only real problems I had in the morning. By after noon the sinus problem was still bad and I sarted coughing. I had to go to a pastors meeting on the other side of Houston tonight. I covered up and left with my family at about 4 pm. It took 2 hours to get there and I just got home a few minutes ago. (12:30 am) I am extreemly tired and I hurt all over and I keep coughing. I probably got too much sun exposure. I can't waite to go to bed. I just have to stop coughing and stop sneezing.
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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Offline
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Posted: Tue Mar 14th, 2006 07:04 |
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RevDennis
a reminder: Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal..
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 Mar 15th, 2006 05:02 |
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Day 73- Benicar 40q6h Day 63 - Mino 100q48h Dose 30(dose 8@100)
Thanks Barb,
Good Evening All.
Well, I am feeling better now. Last night when I wrote my report I was totaly wiped out. I had a meeting and had 2 hrs of sun light exposure. I was covered as much as I could as I drove. But good grief, I almost pulled over coming home to let my wife drive and I probably should have. I had a brain herx and I could not even think as I was driving home. I took my benicar when I got home and my mino. I am happy to say that I slept great. I think I woke up once with a stuffy nose but I am not sure. I slept in and opted not to go to the meeting this morning. I stayed in and worked on a clients financials for his corporate taxes. Today I did well. My sinuses were not bad like yesterday. I watched a rented movie with my youngest daughter around noon, she's on spring break. Worked some more after that. I laid down at 5pm. and slept until 8 pm. I was supposed to take my benicar at 6 but slept through so I took it as soon as I woke up. I slept very well but I felt terrible when I got up. I had a headache and hurt all over. I took a couple of tylenol and then started feeling better. Tonight I feel ok with no real herxing. I have my doctor appointment Friday and it is a 3 hr drive each way. This will be my first visit since starting MP. I will definately do what Dr Marshall recomends for light exposure. There is no way I want to go through this again. I am looking forward to getting my phase 2 prescription so I can start.
Have a great 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 Mar 16th, 2006 04:36 |
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Day 74- Benicar 40q6h Day 64 - Mino 100q48h
Good Evening All.
I have not had much herxing today. I Slept ok last night, even though I woke up several times, I went back to sleep quickly. I have had some preasure in my neck and head. Also The persistant cough and stuffy nose.
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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