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Chris
Moderator
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Posted: Sat Jan 1st, 2005 20:17 |
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Meg,
Re: Besides cardiac Herx, you should be concerned about any erxheimer reaction that might send you to the emergency oom. That has included severe abdominal pain, chest pain, rrhythmias, severe body rash, increased shortness of breath nd throat tightening.
I've seen none of these. My doctor's been worried about the rising BUN levels. I haven't found any description of what symptoms I could use to monitor kidney function, other than the blood tests.
<tongue in cheek>It would be nice if there was some clear guideline, like 'don't let the herx get worse than a 12-pack hangover'. I supposed that'd be a 6-pack in Australia, Canada and most other places. </tongue in cheek>
I will cut back the mino for the next cycle. I've got to go back to work to start off the new year, see the Dr and so on. So, the level of herx has to be low enough to let me drive around a bit.
Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Sat Jan 15th, 2005 19:13 |
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| At 50mino + tiny Z, the herx was just noticable, and I got in a full week of work. Went to 100mino+Z on Thursday, and herx started about 4 this am. It's aches & pains, and lethargy after a hot shower. Not too bad.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Wed Jan 19th, 2005 14:53 |
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| Sunday wasn't bad, Monday was ok, Tuesday was worse, but I went to work anyway, so it wasn't that bad. I didn't sleep that well last night, and the aches where there this morning, but have subsided, so I'm going back to work again. Things felt better by Tuesday night, so I went bowling for the first time in months. I don't know what to attribute it to, but this is the first time in a couple of years that I got through 3 games without a sore back.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Sun Jan 23rd, 2005 21:18 |
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Chris,
Would you please send for the Phase 2 questionnaire and access to the P2 forum? HERE's the info on how to do that. 
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Chris
Moderator
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Posted: Mon Jan 24th, 2005 15:10 |
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| I have already sent in the replies to the phase 2 questionaire. Do you need it again? Are you asking me to start posting only in the phase2 forum?
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Offline
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Posted: Wed Jan 26th, 2005 06:00 |
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Chris says, "Are you asking me to start posting only in the phase2 forum?"
By all means, NO...
You are more than welcomed to stay here and post, but please, if you have specific med dosing questions, only ask those in Phase 2 forum.
So far, I've only been posting on my thread in this forum, but some post in both places so they can put more detailed med dosing info in the Phase 2 forum thread.
OTOH, some people stop posting here and only post in the Phase 2 forum. It's up to you.
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Chris
Moderator
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Posted: Wed Jan 26th, 2005 23:33 |
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Ok, then, without specifics.
The good days are getting better. Either that, or I'm
getting too much sun on the drive to work.
However, I didn't have the urge or energy to go to work for December and the first weeks of Jan, so I'm sticking with the story about getting better. Blood was drawn last week, so we'll know for sure in a bit.
I'm still getting herx, but it's generally mild; much milder than with the initial mino. I get aches & chills and feel a need for benicar on a 4-hour cycle. On the good days, I get involved in things & tend to slip to an 8-hour cycle for the benicar.
now gone to > click > Slow initial progress, part 2
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Mon Aug 14th, 2006 22:08 |
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20 months later ... and 20 months better.
More endurance, less fatigue; but it still comes and goes with the abx & herx. I'm taking the stairs a lot just to stay away from the skylight by the elevator at work.
Intestinal problems are just about gone; downright normal without the abx-caused herx.
No more blood sugar troubles;
Joint pains and stiffness just about gone (and I've dropped doing the exercise to keep them loose ... they just don't stiffen up any more.)
Triglycerides are cut in half. The lab forgot to do the HDL check last time, but that'll get checked before the next dr appt.
Incipient thyroid problems (Wilson's temperature syndrome(?)) are gone. I can now wake up, get up and move with purpose within a few minutes, rather than taking 30 minutes to an hour before I so much as pour a cup of coffee without spilling.
The depression & mental fatigue and fog are gone; or mostly gone. Certainly better than I've felt in years. I feel that things are still going to get better for a while, so it's a bit hard to tell where cure ends and hope begins, but I've had so little practice with hope over the years that I'm sure it is 95% cure.
I'm also sure I've forgotten some of the things I've listed as symptoms along the way. Tinnitus still bothers, but the dry eye and dry mouth are on the way out ... I'm still not good (and never was, likely never will be) at keeping lists.Last edited on Mon Aug 14th, 2006 22:13 by Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Fri Dec 15th, 2006 19:48 |
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Latest great news, my PSA levels are back to normal (1.7). I know that PSA isn't terribly reliable, but I'm happy with this news.
Coffee is starting to keep me awake at night. I've no idea what has started working, but I need less caffeine now to keep me working.
The thing that will really change my life is that I'm becoming much less light sensitive. The immediate tradeoff is very sore eyes during herxing, but I'll take the tradeoff.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Fri Dec 29th, 2006 22:01 |
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| I ran across a description of phase III as 'when you don't get noticeable herx from the major combos.' I'm definitely not there yet, as the current combo hits hard. However, there is a marked qualitative difference in the time between herxes. I'm up, active, and somewhat optimistic ('cynical old farts' seems to be the family motto, so I only ever get to somewhat optimistic). Folks who don't see me often have commented on the dramatic difference in appearance.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Wed Jan 10th, 2007 18:40 |
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| I think I'm sleeping through much of the current herx. While I've noted some eye irritation as herx, I've missed some. Last night, I had to work late and about 2am my eyes started hurting and feeling sandy to the point that I could not read. It also was too bothersome to let me sleep, but in about 45 minutes it calmed down, so I figure it was a eye herx, just much stronger than I'd noticed during the day time.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Sun Jan 14th, 2007 17:21 |
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Cloudy day today. Went to church, with zinc oxide, 10% glasses and wide brim hat. I could not find the 2% glasses and went without a face shield. So far, no ill effects.
Doesn't seem like something to brag about, but it is quite the change.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
| Status: |
Offline
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Posted: Sun Jan 14th, 2007 17:34 |
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Chris,
I actually try to sleep through immunopathology peaks. For the most part, this has worked. I have also noticed for me as a general rule, whatever borderline to regular strength Sx is available will be more pronounced the next day by not getting a regular block of sleep. (So by the same token, naps/rest seem to help.)
As for light, that is something to be impressed about! When light sensitivity lifts after being a challenge for quite some time, that is wonderful!
Congratulations!!!!--Janet
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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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Chris
Moderator
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Posted: Mon Jan 15th, 2007 18:21 |
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| Went to NYC for the last dinner with my son and his wife before they become parents and we become grandparents. I chose not to wear any dark glasses for the evening; they get between me and who ever I'm talking to. And it was a nasty rainy night for driving, not suitable for dark glasses. Between extra light and a small bit of alcohol, I fell asleep early and stayed asleep for about 10 or 11 hours. The herxy buzz is just now wearing off. Something from yesterday had an impact, though much less than in previous years.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Tue Jan 16th, 2007 19:20 |
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| Or maybe it wasn't something on Sunday; maybe it was just end-of-cycle herx. I was herxy all day long Monday. Looking back at my notes, I see that the end-of-cycle herx is becoming prominent.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Sat Sep 1st, 2007 02:03 |
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Another 6 months gone. Still on the same abx combo as a year ago, but finally at full dose. I tried to take an abx holiday, dropping down to just benicar, and then to nothing. But, a mild herx stayed with me. A bit of exercise and the immune system would kick in. A cool night and good sleep and the immune system would kick in. Taking the abx does calm things, but not as well or for as long as it used to. Everything continues to get better, but slowly.
I've started to have a cup of coffee in the morning again. It's the one thing that seems to be consistent in shutting down herx to get on the way to the rest of the day.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Tue Dec 11th, 2007 07:54 |
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3.5 years on the MP. Light sensitivity is reduced, but I'm still seem paranoid about in the eyes of most folks I know. I don't use NOIRs when reading the computer screen, (but do use reading glasses which should block the UV). I suppose I should invest in a pair of the combination reading and sunglass units. The 90% NOIRs are just too dark for me to read the computer screen with now. A couple of years ago, just letting the NOIRs slip in front of the computer screen for 30 minutes would cause trouble.
I still get easily fatigued ... but it's comparatively mild and short events these days. I walk away from a night of bowling with little pain, though the carpal tunnel area does tighten up for a few days. 2 years ago, I would be walking painfully back to the car, and it would take 3 weeks for the arm and back to stop hurting.
Progress has slowed, but then I'm working full time and have no more scary symptoms so going slow is just fine. I also have to pick up slack now that my wife is on the MP. (Of course, my approach to that is to try to convince her that some things just don't need to be done that often, which doesn't always go over well.)
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Fri Aug 1st, 2008 04:20 |
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4 years on the MP. And finally, the light sensitivity is going down noticeably. But not gone yet, Blue Lizard is still going to make money from me for a while.
The IBS symptoms were triggered rather dramatically in the low to mid dose levels of the current combination, but have tapered off to almost nothing.
New herx still shows up. Only recently have I started coughing stuff up from my lungs as a herx. I've never been told that I had sarc trouble in my lungs or any other trouble there, so this was unexpected. My GP suggested this might be an allergy, but I haven't had allergies in the past, and allergies don't usually have a fixed 14 day cycle that matches my 14-day abx cycle.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Mon Aug 25th, 2008 17:33 |
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I'm getting back to the beginning now. The current herx is a low grade fever (about 99.5F). My serious problems started with a high fever (105F) back in 1983, which tapered down to a low grade fever, and didn't go away for 6 months. The low grade fever kept coming back every few months for years, and too often building to 102-103F.
One thing I noted is how much coffee acts like prednisone in regard to the fever. Shortly after I finished my morning cup of coffee this morning, I was covered in sweat as the fever broke. And the morning is when the fever is at it's low point. It's not the bed-soaking sweat that prednisone caused, but it's still quite uncomfortable.
I know there are reasons to avoid coffee, but I do need breaks from the fever, and the effects of the coffee don't last all day.
Even after 4 years of the MP, I do find that getting a new herx is spooky. I get a real strong feeling of dread as the fever comes on, as the arrival of a low grade fever often used to mean that I'd shortly be in bed with a strong fever (102-103F). And, it's spooky even though I chose this current combo as I thought it might invoke just this herx.
Last edited on Mon Aug 25th, 2008 17:35 by Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Lee
Member in Phase 3
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Posted: Tue Aug 26th, 2008 00:19 |
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Chris ...I too am almost 4 years into the MP and still discover new herx' ....according to my "life style" and "MP meds". I sure can relate to the feelings of dread as I get the sweats ....knowing I am too sick to carry on with whatever I am doing at the time. I have had to curtail my coffee and also teas for now. My foods are so limited it is scary. I also have to watch my blood sugar like a hawk. Splenda will cause a spike in my blood sugar that makes me ill enough to have to lay down. I never know for sure what will cause this feverish shakey syndrome. Even plain tylenol has done it. Splenda has not always done this either ..... Makes me wonder if my liver is weak ....so I use milk thistle regularly. I have never had this syndome after using milk thistle. Is it possible we are in Phase 5?! Good Luck!! Lee
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2003 SARC w/COPD Hyper-Flex Fibro.
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| 2008 D25-9.7 silymarin/sunlight w/noirs
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