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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Wed Apr 11th, 2007 23:40 |
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I am still getting minor herx response with this combo, but they are short lived. I have a TDY coming up and will be traveling 2 weeks the end of the month so I will continue this combo until after the TDY at least. (TDY is a military acronym for temporary duty assignment)
SX- mild headaches with sharp quick stabbing pains in the frontal areas. possibly from sinus and too much light. Although I love this time of year, I always had to deal with sinus (infections, headaches, swolen glands) This time I have very few sx from sinus! Last night I had major drainage because we had to use the heater due to a cold snap, But this is already resolved and My sinuses are much clearer. YAY!!!
-Occasional restless legs while awake and sitting. They want to get up and do stuff!
-I still have very minor lesions on calves, but they don't bother me much at all. Dry skin on forehead although the sandpaper is gone. Forearms and hands very dry and my hands look papery.
-emotions are smoothing out. The mild rollercoaster effect was fun, but over. I feel for all you ladies. I am settling into a comfortable relaxed, and content feeling that has been manifesting for some time now. Even the stress at work and home this last week, which was heavy, has not shaken this. I have a child getting a divorce, a son who is trying to get out of prision, 3 of my children's cars were broken down and on my lawn, my lady was on the rollercoaster, and I had no rest. Add to that loads of company and kids that think they can hide their grades from me and you get the idea. The testing has resumed. The good news is that My lady and I celebrated our 30th yesterday. The love there is so deep. I told her that 30 years were not enough.
- brain function is excellent and my recall is so much better. I still have a hard time finding the right words when speaking or writing, and still but rarely have a hard time speaking. This is mostly slowed speach, once and a great while I will stutter or slur, but that seems to be going away now. I am able to comprehend and act much faster and have a much better understanding of new topics.
-energy is over the top most of the time, even with little rest. I find that I really want a nap about half the time around 2pm but suspect this may be partially due to sugar consumption at lunch. I envy those who get to stay home when they feel rough. It is waay better to do the MP ,I suspect, at home.
- lumps still present under the right arm. I wonder when this sx will resolve?
- lung capacity -one word- amazing!
- pain in the chest wall in different areas, short lived but slight stabbing at times.
Okay this is what I am doing: I have been going without noirs indoors now trying it out even in the conference room. Church was a breese, and home as well. The stores are still too bright most places and the conference room gets to me after about 40 minutes, so I put them on then (always handy). I can tell when to put them on because a dull low level pain begins in the back of my eyes. I am able to go outside without noirs in dark cloudy days and in the late evening now. YAY!! the garden has been neglected for far too long.
Well I better sign off, work to do!
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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BARNEY
Member in Phase 3
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Posted: Fri Apr 13th, 2007 14:07 |
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Oh Bookdad!!!!!!!!!! you have come so far from the days when I harrassed you so much about being such a big baby about getting your blood drawn for the 125D and 25D tests. I know you are really scared of needles but I am truly glad you pulled it together and are now recovering so well on MP. MP is just the greatest, huh?
It just keeps getting better and better. Glad you are on the MP team.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Mon Apr 16th, 2007 03:30 |
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| Thanks Barney, your the greatest!
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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thaiboxer
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Posted: Mon Apr 16th, 2007 09:36 |
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| Awsome update! What's the secret to keeping the fire going in your marriage?
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Thai: CFS 7yrs Pneumonia Rickettsia FeverUO exercise intol, musc twitch fatigue/ Testost subling Jan: 1,25-D 65, 25-D 32/NOIR/Beni Comm Jan05 20mg 3hrs/2abx May05/Q Mar05/probiotics
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Tue Apr 17th, 2007 03:56 |
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Thai: Sensitivity to each other's little needs and wants, putting them before yourself, and turning it over to God when you can't handle it. It takes 2 committed folks and faith in a higher loving person to make it work. Also, once you get past a certain time together, when it gets hard, you think, "oh, I don't think I want to start all over, I'll just ride it out." Thats the best I can come up with. Hope that helps. I guess there is alot to learn together and that makes it hard to condense into a few sentances.
Latest: Friday morning I got caught in the sun. 10 minutes max. I paid for it all day Saturday. I was working under a car before the sun came up (you can't work under a car very well with the kit on) and before I knew it there it was. I was almost done, but not quite. by the time I gathered up my tools it was too late. Friday night I pigged out on some organic cookies and stayed up waay too late. Saturday hit hard: dizzy, naucious, head felt like I was on drugs after a bad flue, body felt like it had a fever and aches and pain all over. It lasted till Sunday morning. I thought I was back in phase 1! I won't do that again!!! diet changed, no direct sunlight and plenty of rest.
Any folks in Florida? I have a buisness trip there Mon 23rd and will be there 2 weeks. I would like to know what I am in for weather wise and light wise (sunrise etc)
Doing good now. Got work tomorrow, so good night!
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Wed Apr 25th, 2007 19:00 |
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Continuing 3 abx as usual...
Here I am in beautiful Florida!! Wow! I am on tdy to Eglin AFB and loving it! I have been here 2 days and staying 2 weeks. I am staying in the building at work, the light is low and the work is enjoyable. Being right next to the fighters as they take off is noisey but Great!!!! It reminds me of my old days.
I went without lunch today because of work, an I don't do that usually. I love good food! But it did catch up with me later in the day. I had some sx from lack of sleep (new place) and dizzyness/ tiredness (imuno and new foods) but okay other than that. I am going to get an early night tonight so I will be good for tommorrow. Slight headache and dizziness on the flight as well because the MP is working my ears (inner ears) and brain. Immuno is steady and tolerable. Yesterday I had a rough time with travel arrangements and did okay. I got irritated but no explosive anger. In fact I was complemented in how I handled it because some of my group said they would have blown up. I am tired so I will relax , swim later, then hit the sack.
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Mon Jun 18th, 2007 14:11 |
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I am continuing on the 3 abx as proscribed.
The trip home and the cumulative affect of travel and exposure and stress took thier toll. I was exausted for a few days. Since I have been back I have been oscillating between feeling very good and herxing with the flu like symptoms.
Lately, the herx have been in my brain alot. I have a hard time describing the feeling but it is somewhat like being on heavy medication with little sleep and feeling dopy, dizzy at times with heavy blurred vision. Mosttimes its like I have too much sugar even though I don't. Kinda bilious feeling. It felt like a stroke several days ago and I thought one of my eyes had crossed but it hadn't. The hip and back herx are only manifest after the Z dosage about the 4th day and short lived.
The energy is lasting longer but so is the exaustion during the herx when ever there is extra activities (unavoidable at times) and stress.
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Sat Jul 21st, 2007 15:33 |
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I have found that the MP can be maintained most anywhere with a few precautions and some forethought. This is the second time on TDY here in Florida for my job and other than some herx and jet lag on Wednesday, I am doing fine. I am catching up on some much needed rest and reading. I keep my abx at the same times regardless of the time Zone and that seems to help. The little fridge in the hotel room keeps my abx fresh and allows me to pourchase non- D foods to eat while here. I get to control the lights in the hotel room so everything is great! I will be starting the new 3 abx combo in about a month as soon as I get back off tdy and things settle down a bit.
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Thu Sep 6th, 2007 14:27 |
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I did much better on the last Trip. I actually went out in the early evening and toured the historic homes (outside only) and got some great ideas for restoring my centarian home! I am going to install a wrap around porch and wanted to see what patterns of the fancy wood work I could find. There was plenty as well as many other ideas.
I am doing well. I have been working on the yard at home now. I have installed 2 lawns complete with sprinkler systems. I also instsalled an extensive drip irrigation system. I avoided the high sun hours and kept covered for most of the time while in the sun but now I can be outside without any protection during the day as long as the sun is not in my eyes or on my skin directly.
I am still getting the afternoon tiredness when going to church all day, but it is getting a little better. I am still on the diet and watching what I eat. Eggs (hidden in baked items) still get me now and then, but mostly I am crusin right along.
I am making the change to the new ABX this week. I will report on that later.
Take good care!
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Mon Sep 10th, 2007 06:45 |
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Went to the Emergency room last night. I left a nail gun on top of the ladder and it fell and hit me in the side of the head. I am okay except for a torn up ear they had to stitch.
As far as herxes this cycle: small fleeting pains in the head. Slight headache 2 times, fleeting nerve responses in the arms, and legs. My lower back has been hurting off and on but I think this is genuine muscle pain from all the yard and renovation work that I am doing on the house. My body hasn't been able to do this for a long while and the muscles need to get in shape. My legs were restless the other day after sitting a long while. At work I can get up and walk around and they feel much better, but not at church. These things are so small and fleeting that I have to think hard to remember them. The only thinkg that is continuous is the blurry vision and even that changes in intensity from minute to minute. I have a slight sinus infection.
All the skin issues are clearing up. the cramps are gone. The creepy skin is gone. The flu like sympoms are gone. The can't get out of bed is gone (when I can get at least 6 hrs sleep). The falling asleep at work is gone. My energy is great and my stamina is way up. I can work again! I do have to take a nap occasionally, especially on Sunday after all that light in church, but doing great other than that!
I am getting even more tolerant of light and have been able to be in the light for short periods without any protection and without any adverse reaction later. I notice that my eyes are the most sensitive and if I pay close attention to them, when they start to hurt, even a little, I back off and I am okay. If I happen to be out a little too long, the worst thing that happens is a long nap.
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Wed Oct 10th, 2007 19:55 |
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Life has been very hectic and busy the last few weeks with harvesting, canning, stripping and repainting the house trim, repointing the brick and repairs to odds and ends not to mention putting in sprinkler systems and lawns. The great news is that yes, this makes me tired, but its a physical tired from work, not an exhausted disease tired. I sleep much better, I awake much easier, and I am energetic for a longer period. Work feels good again.
Its hard to sit for long periods now. When I want to sit I find that I really want to lay down. This happens usually about 4 pm and 10 pm.
I am able to think clearer and design stuff for the house like moulding, trim and decorative work, that was so hard to think about before.
There is new life with the MP! BTW My lady canned 85 quarts of tomatoes. They were as big as large grapefruit! and wow what a flavor! Boy its good to be back in the garden again!
Last edited on Wed Oct 10th, 2007 19:58 by bookdad
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 239 |
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Posted: Mon Nov 17th, 2008 06:10 |
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I have been neglecting my duty here. As I get stronger and better able to cope, it seems the amount of business increases accordingly. This new job has me running 12 to 14 hrs a day. Impossible a couple of years ago. Although IO am better and so much healthier, I am still not whole. I still have to avoid sunlight. Indoor light is a minor nusance now unless it is really bright but sunlight still kills.
Job is going well and travelling at least once a month. I don't like to travel because of the increased sunlight exposure and lack of recuperative time. The RA in my back loves the airline seats for those wonderful 3 to 4 hour flights. NOT! But I am coping and will do what it takes not to be a victim.
I hope that everyone else is doing well. The MP is not easy but it sure beats the heck out oif the alternative!
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs
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