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Frans
Member in Phase 2
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Posted: Thu Jul 7th, 2005 11:24 |
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Sharon,
I have been having problems with sleep the last months, but have some new pills now that help me sleep very well, so I am slowly returning to my ritual of reading every post on MP.com.
Just 5 minutes ago I talked to the doc's assistant asking her to call the hospital where they did my 1,25D. She is calling right now. I gave her the handling protocol of Quest, so she knows what to ask for. I am very much interested in how that turns out and will post asap.
Glad to see you are starting up again !
All best, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Fri Jul 15th, 2005 02:35 |
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Does anyone else get gas from taking mino?
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Fri Jul 15th, 2005 03:01 |
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Sharon
Dr Marshall says:" All of those symptoms are caused by the disease, not directly by Benicar or the other antibacterial drugs. Keep reading and you will be able to isolate the symptoms and understand them more fully as part of the recovery process, not anything you should be unduly concerned with." <<<
see What kind of probiotics should I use? this may help..
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Jul 17th, 2005 04:07 |
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I had been posting every week, but I feel the need to post more often until I can get on a more traditional schedule.
One week ago I began 12.5mg mino 2X/day to tame an everlasting herx that came from Benicar and D-avoidance alone. This was a good move because I was beginning to feel very discouraged. Several times during this past week I have been able to do something fun or challenging, and that has raised my spirits. (Before, I couldn't do anything.)
I was encouraged enough to plan a trip to a lighting design store this morning.... covered up, of course. But I didn't wake up 'til noon, and then all I wanted to do was go back to bed....which I did. Finally, I felt like going out around 630P, and it was fun to see various possibilities for lighting. I hope to have enough feel-good time this year+ of "solitary confinement" to spruce up my space, read, and watch old movies.
Warning to others: Don't let yourself get too down without posting. Barb may very well have just the right answer for you.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Thu Jul 21st, 2005 06:31 |
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WEEK 14 OF INTERRUPTED PROTOCOL - Midweek report
I have been taking 12.5mg mino every 12 hours for about 10 days. I am still herxing with this schedule, odd as it may seem, but at a tolerable level.
It is tolerable because I can sleep whenever I want. My sleep/wake schedule goes something like this: up very late at night and feeling fairly good, sleep 'til about 11A with one interruption for 9A Benicar, feeling foggy and "poisoned" so back to bed around noon for two hours, then up around 3P to try to do a few things around the house but still foggy and listless, maybe a short nap around 5P, and finally around 9P starting to feel somewhat decent.
It's 130A, and I'm actually feeling alert and interested in what I'm doing. It's a nice feeling to have for at least some part of the day.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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spacee
inactive member
| Joined: | Sun Sep 12th, 2004 |
| Location: | Florida USA |
| Posts: | 274 |
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Posted: Thu Jul 21st, 2005 17:56 |
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Hey Sharon, My sleep has been just like yours. Made it very difficult for me to schedule a doc appt. It is still changing but I just "go with the flow". Know you will to. (It isn't like we have a choice, is it? When our bodies are ready to sleep, it is time to SLEEP!) I feel it would be much worse for me to have the insommia that some have.
Hugs to you,
Spacee
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CFS/FM/tachycardia/bladder and skin inflammation. C-Diff overgrowth 1995
clonazapan 1gm HS, Xanax .50mg HS, Premarin .625, Ultram 50mg BID Restart 9/15,NoIRs, No Vit D diet,Probiotics,11/12/04 25D=25, 1,25D=70, 9/9/05 25D 14, 1,25D 37. Beni Q6H, Mino 10
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Jul 24th, 2005 03:47 |
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Hi Spacee.....look for the PM I just sent you.
Hugs enjoyed and returned.......................Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Jul 24th, 2005 04:20 |
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WEEK 14 OF INTERRUPTED PROTOCOL - End of week report
Still on 12.5mg mino Q12H.
I'm still snoozing away, having decided not to fight it. This way, the awake time I do have is very tolerable and sometimes even a little productive. I guess I should feel blessed that my time is totally flexible and that I'm having some good hours every day.
Barb....I have wanted to ask you about this:
I do not wear my 10% NoIRs inside. Reason: I can't see well enough to get around, sort laundry, cook, read newspaper, etc. For both the computer and the TV, I have the brightness turned down to minimum viewable level (for me). The computer screen at its brightest is still hard to see well with the NoIRs.....AND also hard to see with clip-ons to my presc glasses.
On average I watch 1 hour of TV a day and am at the computer 2-3 hours.
I have noticed gradually over the years that I require increased light to read by.This must be Senior Citizen Eye Syndrome.
My house is dark enough according to everything I've read. I only go out during the day once every two weeks for a short time and well covered in Solumbra products.
I know I could order a third pair of the 40% NoIRs, but I would prefer not to do so unless you think it is important for me at this stage.
Thanks.......................Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Jul 24th, 2005 04:54 |
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Sharon
you need to be able to see.. you can have lights on in the house and then will only need to protect your eyes with your glasses. and you may find a light behind you to read helpful so that the light is not in your eyes.. and a cap if necessary..
Natural light > protect skin and eyes
Artificial Light > protect eyes
for more info see PROTECTING YOUR EYES
& AVOIDING SUNLIGHT and BRIGHT LIGHTS Dr Marshall says: "Everybody has to test their limits and see what they can deal with."
I find the 40% useful now as the 10% became too dark for me at the moment. I wear glasses at all times.. with lights on when I need to be seeing anything..
When you feel ready to extend your schedule, you can try 25mg mino Daily first, - and then if / when stable you can extend out to 48H ..
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Thu Jul 28th, 2005 06:44 |
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WEEK 15 OF INTERRUPTED PROTOCOL - Midweek report
Still on 12.5mg mino Q12H.
Today is the first day I have felt good since starting Benicar. It was wonderful to go about my business.... accomplishing things and enjoying the process.
That's good! What's bad is now I must start planning to change doses of M to give me a herx and thus feel bad again. When I feel bad, I sleep all day, feel depressed and useless, and wonder if I can persevere. But with Barb acting as a beacon pointing the way, I will follow.
I think I'll take a couple of days to enjoy this before forging ahead. Since being on the MP I have been much more fatigued and have some pretty bad dreams. However, I have a much diminished craving for sweets, AND MOSQUITOES DON'T BITE ME! How's that for a bonus?
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Jul 31st, 2005 05:11 |
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WEEK 16 OF INTERRUPTED PROTOCOL - Weekly report
Still on 12.5mg mino Q12H.
I had hoped to have a few days of feeling fairly good before upping to 25mg Q24H, but that was not to be.
I had some Ambien left over from my shingles episode, and in order to get on a more normal sleep schedule, I took 1/2 pill Wed night. It worked! So the next night I took the other half. Mistake!
I spent the next two days in a zombie-like state. It was like herx x 2. Now back to 12.5 Q12H until I feel half-way decent again. Then onward and upward.
Progress: noticable lessening of desire for sweets
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Aug 7th, 2005 05:20 |
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WEEK 17 OF INTERRUPTED PROTOCOL - Weekly report
Still herxing on 12.5mg mino Q12H.
Main symptom is incapaciting fatigue. I have barely enough energy to do the things that must be done: grocery shopping, preparing meals, cleaning, laundry, and personal care. I do not want to make this herx any stronger.
I do get a little clarity of mind and and a modicum of energy very late at night. I go to bed around 2A or 3A, get up for 9A Benicar, eat breakfast, read the paper, check the MP summary, and go back to bed 'til around 1P. I feel an uncontrollable need to nap around 4P, then up for phone calls, mail, and desk work. Dinner around 7P, errands or yard work at dusk, and still feeling draggy until 11P or so.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Aug 7th, 2005 07:01 |
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Sharon
If you are no longer enjoying your break, it may be time to make a move if you are ready. Some people do feel worse when they need to increase the abx.. because their immune system has stayed turned on.. and you may continue to feel intolerably ill ......
When you begin to feel worse on the dose level you have been at it maybe that you need to increase the mino dose, - to 25mg Daily for a start, to feel better.. and to extend out to QOD as you are able. let us know how you go.
The reason this can work is that the immediate effect of the mino is to suppress / slow the immune system by virtue of the concentration. and the stimulation of the immune system (herx) occurs as the mino decays..
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Aug 15th, 2005 06:18 |
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WEEK 18 OF INTERRUPTED PROTOCOL - Weekly report
I did it! I upped to 25mg mino Q12H midweek. So far so good. Actually I feel somewhat better than I did on 12.5mg Q12H.
So now the next leap is to stretch the 12 hours out to 24 and then to 48. It seems like this process is going to take me forever! I'm used to being the hare in life; now I must learn to be the tortoise.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Aug 21st, 2005 01:24 |
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WEEK 19 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg Q48H
For the last four days I have gone to mino Q48H, and (naturally) feel worse. The hardest thing is feeling tension along with the fatigue. At the lower dose and using it every 12 hours, I was profoundly fatigued but could always go right to bed and "sleep it off".
With the tension added to the fatigue, I either can't fall asleep or sleep in a non-refreshing way. I'm in that dreaded state of not having any motivation or energy to do anything, but not being able to restore myself with good sleep.
The first day I went to Q48H I had some diarrhea.
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
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Posted: Sun Aug 21st, 2005 01:46 |
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Sharon
Thank you for posting.. re the tension... you may wish to ask your Dr about an increase in your Rx meds.. also for more info see FAQ Which sleep med, calming, muscle relaxant can I take?
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Aug 29th, 2005 02:57 |
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WEEK 20 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg Q48H - two weeks
This week I experienced the full force of the MP. I am happy to finally be at this basic level.........not so happy with the day two experience. However, it sure helps to know that the worse I feel the more bugs vanquished.
On day two I feel like I've been hit by a truck and need to sleep nearly all of the day. Basic self-maintenance is all I can accomplish. I actualy spend a large part of day one in bed too....just feeling extremely tired....but I perk up a little at the end of the day just when it's time to take another 25mg.
That's the MP: up and way down, up and.........
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Tue Sep 6th, 2005 04:12 |
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WEEK 21 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg Q48H - three weeks
This was a good week. I still felt bad and was incapacitated a lot of the time, BUT not as bad as the week before or the week before that. SO, I'm experiencing discernable progress for the first time.
This tells me that I WILL be able, at some time, to go to 50mg Q48H and beyond. I don't know when that will be, but I know now that it will happen. I have been going as the tortoise, not as the hare.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Tue Sep 13th, 2005 09:05 |
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WEEK 22 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg Q48H - four weeks
Just checking in. Can't post much because son is here visiting from the East.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Sep 19th, 2005 03:38 |
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WEEK 23 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg Q48H - four weeks
This week I took 25mg every day because of having my son visit plus a niece and nephew for dinner on Friday.
By this dosing schedule, I made every day a day one. Otherwise, I could not have handled it. I was still very fatigued but had chances for naps here and there.
Today I feel the best yet.......but I will have a day two tomorrow. Ugh!
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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