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graceful7
Member in Phase 3
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Posted: Fri Mar 2nd, 2007 17:35 |
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avoiding light and D, benicar 40 mg q 6 hr, begin mino 100 mg 2/28/2007
I'm back home, did all right on my non vacation staying on mino 75 mg, q 48 hrs. Started 100 mg as I was leaving, Wed, Feb. 28. Pretty intense herxing, but nothing new. Depression and anxiety were bad the next day, benicar helped. Joint and muscle pain and burning. When I lay or sit still and ask myself where exactly it hurts I have to say just about everywhere, though I'm most aware of elbows and knees. I had to hit the deck running and went all day on one nap though.
Just took second dose. See my doctor on Monday, and expect to get my scripts for another D test, and phase II meds.
Karen
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FMS CFS Meniere's depression 125D30 Ph1Nov06 Ph2Apr07 Ph3Dec07 digestive enzymes buproprion 200 mg melatonin tylenol Noirs 25D10 Dec07
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Offline
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Posted: Fri Mar 2nd, 2007 18:45 |
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Thank you Karen
There are detailed Information posts at the top of the Phase 2/3 Forum -
We encourage you to begin a new progress report there in that forum to discuss the Staff recommendations as to which meds and dosing are most suitable to your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you..
Let us know there if you have any questions. Thanks, 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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graceful7
Member in Phase 3
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Posted: Thu Mar 15th, 2007 01:13 |
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beni 40 mg q 6hr, mino 100 mg q 48 hrs, melatonin, probiotics
The adjustment to 100 mg mino seems to have gone more smoothly than the others, in fact in the last week or so I believe that I am feeling better. Still rough emotionally, but the physical herxing is quite tolerable.
Got my D results today - 13. I was very happy, but then read that "you" really want them under 12. Do I keep on keeping on or try to be more diligent?
I saw my doctor and we agreed on my phase 2 antibiotic and it is on order. So... I plan to start phase 2 the minute I get home from a commitment on the 24th unless something changes or I hear otherwise.
One other question- most nights at some point I wake up and have to feel where my right arm is with my left because there is no feeling in it. (asleep) (I often sleep on my stomach with my arms overhead) Is this harmful, or potentially so?
Thanks, at the moment I feel that I've turned a corner.
Karen
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FMS CFS Meniere's depression 125D30 Ph1Nov06 Ph2Apr07 Ph3Dec07 digestive enzymes buproprion 200 mg melatonin tylenol Noirs 25D10 Dec07
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
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Posted: Thu Mar 15th, 2007 01:25 |
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Thank you Karen
Good to see your significant drop in 25D.. Continued diligent avoidance of Vitamin D is recommended for MP.. see The Importance of Reducing 25-D Can my Vitamin 25-D go too low?
numbness in arms, hands, is a common immunopathology symptom..
Before you start taking your new abx: We encourage you to read the Information in the Phase 2/3 Forum and begin a new progress report there to discuss the Staff recommendations re meds and doses for your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you..
see you there, 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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graceful7
Member in Phase 3
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Posted: Tue Jun 5th, 2007 02:26 |
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Here is my progress report for six months on the MP.
Six Months on MP
Headaches – virtually none since beginning benicar – used to have debilitating headaches several times a month
“Colds” Only one in six months – significant improvement
Stopped thyroid medication in first month
Vertigo attacks – lessened in severity None since April 1, which seemed to be connected to light exposure.
Tinnitus has lessened significantly, notice it only initially after abx dose now
Candida – improved
Reflux – improved
Weight is up 2-3 lbs, esp. since phase II. This is negative as I am significantly overweight.
Sleep – about the same, still need 1-2 grams melatonin to sleep
Symptoms which increased initially but have abated some:
Anxiety
Hot flashes, night sweats
Light sensitivity
Brain fog
Heart palpitations
Breathlessness
Parasthesia
That’s the good news. However I have to say that in terms of day to day functioning it’s still fair to say that I am worse than before I started, because of the increase in fatigue, muscle and joint pain, and depression. The fatigue and pain are clearly connected to herx. I do think that there has been an increase I what I can do each day after the initial difficult adjustment to the Phase II abx. I think that post exertional malaise now can be measured in hours rather than days.
The continuing symptom that I find most difficult is what I call “flat-line” emotions. I have been really struggling with whether to take something for this. I had a doctor's appt. today and was hoping that she would tip the balance and she did. She wants me to try relaxation, biofeedback, etc, and perhaps some mild exercise if I can tolerate it.
For those of you wondering about phase 2- the initial adjustment was quite difficult for me, the worst beginning a week in and lasting a week to 10 days. I am very glad that I heeded the advice about being cautious with the phase 2 meds, would not have wanted it to be a bit worse. But things have settled down nicely since then.
Karen
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FMS CFS Meniere's depression 125D30 Ph1Nov06 Ph2Apr07 Ph3Dec07 digestive enzymes buproprion 200 mg melatonin tylenol Noirs 25D10 Dec07
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graceful7
Member in Phase 3
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Posted: Wed Dec 31st, 2008 01:21 |
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I'm a little late, but I want to post a TWO YEAR PROGRESS REPORT. It's easy to do it on December 30, because even my family was amazed at what I was able to do through the holidays this year.
I think it's fair to say that I am back to functioning at least as well as before MP, with noted improvements. No headaches, no colds, no sinus infections, no vertigo. These things put me out of commission regularly, now there are no days that I just have to cancel.
The fatigue and joint pain are dramatically improved. The reflux is only a problem when I eat sweets. My cholesterol is down 60 points, and I have lost 25 pounds. I've had to work at it, but before it didn't matter what I did. I seldom take even tylenol now, and seldom have to adjust my activities or lie down. I still do best with one or two short naps a day. Still have one or two nights a week with trouble sleeping even with melatonin.
The light sensitivity is much improved from six months, but probably is still the most significant factor in deciding what I can or can't do.
I was not able to be on the phase 2 med regularly (that is, not skipping or prolonging cycles) until I went on an antidepressant. It has made a huge difference,and I wish I had done that sooner.
Perhaps the biggest thing for me is that although I lost my MP doctor to an accident, I am going to great lengths to find another provider, because it just doesn't make any sense to stop now if I don't have to.
I have had many moments that I thought I couldn't go on, but it was always in the middle of a cycle when I couldn't do anything about it, and those moments have now added up to two plus years which is hard for me to believe.
Karen
Feb 2009 Update:
Light exposure- low lux house. 10 % Noirs for computer and TV. Daily outings now, long sleeves and pants, hat, mostly 10% Noirs, which is a change. With Pittsburgh winter, unless the sun is shining, I can't see with 2%. Don't wear Noirs indoors anymore except for TV and computer.
Well I had to drive to Akron OH (2+ hrs) and see a naturopath and a DO, but I've got my scripts for another year. I'll do phone consults with the naturopath in the meantime. I'm grateful.
Couple rough days with increased phase 2, as always, esp toward the end -day 8 and 9 were "can't stand my life" days, and day 10 was "sure don't want to get off this couch" with joint pain and fatigue. But I did. Last week I shoveled the walks three times!! Unheard of.
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FMS CFS Meniere's depression 125D30 Ph1Nov06 Ph2Apr07 Ph3Dec07 digestive enzymes buproprion 200 mg melatonin tylenol Noirs 25D10 Dec07
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BARNEY
Moderator
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Posted: Thu Jan 1st, 2009 02:22 |
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Karen,
Congratulations on your improvements on MP!!!! Keep up the good work.
Here's to a Happy and Healthier New Year!!
HANG IN THERE, WE WILL MAKE IT!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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graceful7
Member in Phase 3
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Posted: Fri Jul 31st, 2009 21:19 |
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Alumni Update:
MP Meds: 55 zith q 10 days, cycle 9 , 50 mino q 48 hrs. 37.5 clindy q 48 hrs.
benicar 40 mg q 4-6 hrs.
Non MP meds: Wellbutrin 200 mg daily, melatonin 2-3 mg daily, occasional tylenol
Light exposure- low lux house. 10 % Noirs for computer and TV. Daily outings now, long sleeves and pants, hat. Still need the 2% noirs outside in the sun.
I have been very busy with life, especially schoolwork, which tells the story. I took two full weeks of classes in early June. When I first thought about taking this program several years ago, before starting MP, I couldn't even think about sitting in a chair all day for two weeks. I did it.
I cut way back on the abx hoping to avoid having to wear glasses. I regret that because I had to wear the glasses anyway, and I'm still working at getting back to the levels I was on. More living and learning. I almost certainly won't have to do two weeks in a row again.
I get up earlier and go to bed later and never really stop all day. Do some gardening most days. All quite amazing. Depression still happens but rarely. NO vertigo. Very little reflux. Fatigue and muscle pain, in periods that I can manage. Am I really writing this? Yes I am. What more can I say?
Karen
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FMS CFS Meniere's depression 125D30 Ph1Nov06 Ph2Apr07 Ph3Dec07 digestive enzymes buproprion 200 mg melatonin tylenol Noirs 25D10 Dec07
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