| Author | Post |
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sun Jun 29th, 2008 17:17 |
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Any symptom that correlates with MP therapy may be due to immunopathology. Please see I think I have an upper respiratory infection. What should I do?
Whenever the cause of symptoms is in doubt, try an extra Benicar immediately to see if it dampens symptoms. You should also try increasing Benicar to every four hours for 24 hours and assess.
Decreasing mino to 25mg is a good strategy to decrease symptoms. Please see See What precautions should I take when I must travel?
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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CFS South Africa
Member in Phase 2
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Posted: Wed Jul 2nd, 2008 14:22 |
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Can someone please answer my previous question?
Thanks
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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CFS South Africa
Member in Phase 2
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Posted: Wed Jul 2nd, 2008 14:23 |
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| Don't worry just saw the answer - thanks
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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CFS South Africa
Member in Phase 2
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Posted: Tue Jul 8th, 2008 20:08 |
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Hi there
Just a quick question - what is the rule of thumb with alcohol and MP - I know beer has vitamen D in in and should be avoided. Is there any vitamen D in Whiskey?
Ross
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Tue Jul 8th, 2008 23:26 |
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Please see ALCOHOL on the MP.
If you are able, you can find info quickly and help our overburdened small staff of volunteers by independantly trying to locate basic information using the ABC of MP or searching the site or typing key words into the google custom search feature before you ask a question. Thank you. 
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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CFS South Africa
Member in Phase 2
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Posted: Wed Jul 9th, 2008 14:02 |
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Hi There
Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
Dropped back to 25mg every 48 hours 3 July
I dropped down to 25mg mino every 48 hours a few days ago as I'll be travelling for work and I need to be as sharp as possible. I have found that my IP has decreased as I thought it would - enough to get me functioning with less bad days then on 50mg mino. I'll ramp back up in a few weeks when I'm back from my trip. Otherwise everything seems to be going well and I'm having a few days with awesome energy and a day or two here and there with borderline intolerable IP (when on 50mg mino). Things looking good though and I believe I'm making good progress. My sleeping has really inproved too. Had a couple of drinks over the weekend - I felt better then usuall after drinking that amount as I have been off alcohol for a while now.
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg every 48 hours.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 3 hours sun exposure since last post (driving)
Symptoms:
Brain Fog - 5
Insomnia - 5
Flu like symphoms - 5
Fatigue - 6
Post exercise fatigue - 5
Swollen/sore glands neck/shoulders - 5
Pain in chest - 4
Pain in ears - 5
Sinus congestion - 5
Red/sore eyes - 6
Head aches - 5
Regards,
Ross
Noted
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat Jul 26th, 2008 06:40 |
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Ross, if you're back from your travels, please let us know how you are doing..........
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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CFS South Africa
Member in Phase 2
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Posted: Tue Jul 29th, 2008 19:35 |
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Hi there
Just got back from 2 and a half weeks travel overseas where I had to be on my A game for work and had a little holiday too. All in all I felt really good after dropped my mino down to 25mg every 48 hours. I had a lot of energy and was able to cope with a very busy schedule with little adverse effects. I would definately not have been able to have done this 6 months ago. People are commenting that I'm looking alot better and overall the trip was a success. I ramped back up to 50mg of mino every 48 hours and I'm sure I'll feel a little worse before I get better.
Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
Dropped back to 25mg every 48 hours 3 July
Ramped back to 50mg mino every 48 hours 29 July
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg every 48 hours.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 4 hours sun exposure since last post (two and a half weeks)
Symptoms:
Brain Fog - 4
Insomnia - 4
Flu like symphoms - 4
Fatigue - 5
Post exercise fatigue - 4
Swollen/sore glands neck/shoulders - 4
Pain in chest - 4
Pain in ears - 4
Sinus congestion - 4
Red/sore eyes - 4
Head aches - 4
Question:
I have been feeeling really good the past two and a half weeks with very little herx (been in London out the sun which really helps) - it's quite hard to avoid the sun here in SA. Will be moving to London next year which will definately help me - also been wearing sunglasses whenever I'm outside. I'm sure I will get a little worse when ramping up to 50mg, but i feel I'm making really good progress in the two and a half months since starting MP. Do you feel from my posts that my progress is going the right way and that I'm on my way to being healthy again?
Regards,
Ross
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Tue Jul 29th, 2008 20:59 |
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It's nice to see that you have experienced some symptom improvement in phase one....not everyone does.
As long as your 25-D is elevated (25D 54.1 ng/mL), your immune system is suppressed. Recommend you retest asap to make sure it is coming down. You can expect symptoms to increase as stores of vitamin D gradually drop.
It is important not to stay in phase one too long. Bacteria may exist that are resistant to minocycline and they may repopulate tissues cleared of bacteria. Low-dose combinations of MP antibiotics are far more effective at killing CWD than antibiotic monotherapy.
Finding the pace of therapy that works for you is part of the experience gained throughout the MP journey. Ramping too quickly is not advised but there is no need to tarry. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds.
Let us know how you are doing........
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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CFS South Africa
Member in Phase 2
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Posted: Mon Aug 4th, 2008 15:49 |
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Hi there
Ramped back up to 50mg mino at the beginning of last week, and was feeling good until Friday where I seem to have picked up a bit of a sore throat and coug that has been going around. I have had it for two day - nothing hectic just not feeling fantasctic but am able to work. Should I take anything for it or just try let my immune system take care of it? I'm confident my immune system is getting stronger and without taking any other medication I'll be feeling better in the next two days.
I'll have my bloods taken next week again and let you know the results and based on those you can let me know the correct action to take going forward.
Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
Dropped back to 25mg every 48 hours 3 July
Ramped back to 50mg mino every 48 hours 29 July
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg every 48 hours.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 4 hours sun exposure since last post
Symptoms:
Brain Fog - 4
Insomnia - 4
Flu like symphoms - 5
Fatigue - 5
Post exercise fatigue - 5
Swollen/sore glands neck/shoulders - 5
Pain in chest - 5
Pain in ears - 4
Sinus congestion - 5
Red/sore eyes - 4
Head aches - 4
Regards,
Ross
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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CFS South Africa
Member in Phase 2
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Posted: Mon Aug 4th, 2008 15:55 |
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Quick question:
You say it's not advisable to stay in phase one for to long - what is considered a too long? How do you know when it's a good time to progress to phase two?
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Wed Aug 6th, 2008 04:41 |
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| Three months is a general guideline. Folks who are complant with avoiding light are usually able to progress to phase 2 by that time.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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CFS South Africa
Member in Phase 2
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Posted: Wed Aug 6th, 2008 08:40 |
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| I'll get my blood tests done asap and then we can assess whether I should progress to phase 2.
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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CFS South Africa
Member in Phase 2
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Posted: Wed Aug 13th, 2008 08:41 |
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Hi there
Ramped up to 75mg of mino every 48 hours today. I was feeling really good on 50mg and was having little herx and thus I've now ramped up. I'll be getting my blood tests done to tomorrow and as soon as I have the results I'll let you know. From there you'll be able to tell me if I should start Phase 2 of MP. I have been very good at avaoiding the sun of late which has really helped me feel alot better - no more 4 hours on the golf course!
Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
Dropped back to 25mg every 48 hours 3 July
Ramped back to 50mg mino every 48 hours 29 July
Started Mino 75mg every 48 hours 13 August
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg every 48 hours.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 1 hours sun exposure since last post
Symptoms:
Brain Fog - 4
Insomnia - 4
Flu like symphoms - 4
Fatigue - 4
Post exercise fatigue - 4
Swollen/sore glands neck/shoulders - 4
Pain in chest - 4
Pain in ears - 3
Sinus congestion - 4
Red/sore eyes - 3
Head aches - 3
I keep you posted as to my progress after ramping up to 75mg of mino.
Regards,
Ross
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
| Status: |
Offline
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Posted: Wed Aug 13th, 2008 12:23 |
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Thanks for checking in C.
Based upon your symptoms you seem to be handling 75mgs of Mino ok. Please try to control other aspects of your environment, ie. sun, diet, rest etc. to help you keep your symptoms tolerable.
In phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked.
And conversely, when symptoms peak (not necessarily intolerable), reduce the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg) to see if this dosing has an anti-flammatory effect for you.
When a symptom approaches intolerable try an extra Benicar, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom.
The resulting information can be added to your personal tool kit. You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs.
You are responding as expected and doing a nice job. Keep up the good work. You will be moving on before you know it.
Best Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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CFS South Africa
Member in Phase 2
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Posted: Sun Aug 17th, 2008 17:58 |
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Hi there
Since ramping up to 75mg of mino last week I've had a bit more IP (herx) then I had on 50mg (toward the end of my 50mg dose). However I've also had a lot of energy too, in the period when I'm not herxing. I had my blood test done last week and I await the results.
Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
Dropped back to 25mg every 48 hours 3 July
Ramped back to 50mg mino every 48 hours 29 July
Started Mino 75mg every 48 hours 13 August
MP meds: Benicar(votum 40mg) - every 1 hours, four times a day. Mino 75mg every 48 hours.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 1 hours sun exposure since last post
Symptoms:
Brain Fog - 4
Insomnia - 4
Flu like symphoms - 4
Fatigue - 4
Post exercise fatigue - 4
Swollen/sore glands neck/shoulders - 4
Pain in chest - 4
Pain in ears - 3
Sinus congestion - 4
Red/sore eyes - 3
Head aches - 3
I feel like I'm progressing extremely well and I know I'm feeling and looking better. From my progress reports and taking into consideration my blood results, symptoms and length I've had CFS, do you think I'm making good progess???
Regards,
Ross
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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P.Bear R.N.
Research Team
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Posted: Mon Aug 18th, 2008 00:59 |
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Ross, Since your are having Immunopathology (IP) you are making good progress by killing bugs. As your 25-D level slowly drops you can expect greater bug killing and perhaps more intense IP responses. Keep up the good work.
best, P.B.
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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CFS South Africa
Member in Phase 2
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Posted: Tue Aug 19th, 2008 13:26 |
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Hi There
I have just received my 25D results (taken on 14 August - three months after initial tests). My D3 ia now 21.7 ng /ml, quite a bit drop from 54.1 three months ago. Does this mean that I'm making good progress, or will you only be able to tell when my 1.25 results come back?
Regards,
Ross
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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CFS South Africa
Member in Phase 2
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Posted: Tue Aug 19th, 2008 15:03 |
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| Do you think I'm ready for phase 2? If so how do I go about it?
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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CFS South Africa
Member in Phase 2
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Posted: Thu Aug 21st, 2008 12:31 |
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| Can someone answer my previous questions?
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 21.7 ng/mL(15 Aug) - 1.25 52.4 pg/mL(30 March) - Non MP meds - 1mg dormanoct tablet each night
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