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Willemina
Member in Phase 3
| Joined: | Sat Jul 7th, 2007 |
| Location: | Perth, Australia |
| Posts: | 78 |
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Posted: Fri Oct 12th, 2007 01:57 |
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from Willemina on Benicar
Olmetec 40mg Q6H, NoIR glasses, minocycline 25mg Q48H, frusemide 40mg Q24H, Slow-K Q24H, Manesium 320mg and Manganese 5mg Q24H
Hi, I'm now on my third dose of minocycline. Started 8th October and feeling fine. I keep out of the sun at all times except when I have to but then cover myself well and wear my glasses. No bad side effects yet although I've started getting itchy skin on my back and one arm. The itch on the back started before I commenced minocycline; the other is recent. Blood pressure's slowly coming down. I'm sleeping better between those night doses.
Should I get a test to monitor K+ levels? I have to take Slow-K as I'm taking frusemide.
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
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Posted: Fri Oct 12th, 2007 04:33 |
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Thanks for the update Willimina,
It would be a good idea to get your potassium level checked frequently and only take the replacement if levels indicate you are too low. Benicar does decrease the amount of potassium excreted through the kidneys and you could get into trouble with a significant potassium increase, so it is best to get that done ASAP.
Good to hear you are managing well. Can you let us know why you are taking the Lasix in your next post? Thank you.
Warm 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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Willemina
Member in Phase 3
| Joined: | Sat Jul 7th, 2007 |
| Location: | Perth, Australia |
| Posts: | 78 |
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Posted: Fri Oct 12th, 2007 06:17 |
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Olmetec 40mg Q6H, NoIR glasses, minocycline 25mg Q48H, frusemide 40mg Q24H, Slow-K Q24H, Manesium 320mg and Manganese 5mg Q24H
Hi, I'm taking Lasix for high blood pressure. I had congestive heart failure but my GP tells me I no longer have that. I have some fluid retension causing headaches and mildly swollen ankles. My BP is usually around 134/76 even with Olmetec and Lasix. I will get the potassium test as soon as my GP returns from her holiday.
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MP/sarcoidosis/ lung granulomas/rheumatic fever as child/ hip replacement/frusemide/ Duro-K/ 15/9/07/ 25_D 10.4ng/ml/ 1,25 VitD 46.25pg/ml/ Olmetec 40mg q6h/ NoIR glasses/ avoid sun/magnesium/ Australia Willemina
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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Willemina
Member in Phase 3
| Joined: | Sat Jul 7th, 2007 |
| Location: | Perth, Australia |
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Posted: Sat Oct 13th, 2007 09:58 |
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Olmetec 40mg Q6H, NoIR glasses, minocycline 25mg Q48H, frusemide 40mg Q24H, Slow-K Q24H, Magnesium 320mg and Manganese 5mg Q24H
Hi, I must be reacting to the minocycline. Arms are becoming very itchy. I slept badly last night, had sore shoulders and neck this morning when I went for an early walk (beat the sun) and slept most of the day! Feeling very tired. Had mino yesterday, so guess this is the second day reaction we're warned about.
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat Oct 13th, 2007 18:36 |
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That's a very typical reaction to the addition of minocycline and a good sign that the MP is working.....
If symptoms are approaching intolerable or going past tolerable, please review all options in My immune response/symptoms are too strong. What should I do? and adjusting MP meds and your personal tool kit to manage immune system reactions. Assess the options one at a time. Do not hesitate to use any of the adjustments suitable to you.
Remember, the recommended first step when symptoms are intolerable is to increase Benicar to every fours hours and assess effect. Chewing or sublingual dosing may give faster absorptiona and relief. See When and why should I vary my Benicar schedule? and BenicarQuiklink.
As always, if our information does not provide the answer for you, please ask before you take action.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed. Hang in there.....
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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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Willemina
Member in Phase 3
| Joined: | Sat Jul 7th, 2007 |
| Location: | Perth, Australia |
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Posted: Thu Nov 1st, 2007 12:09 |
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Olmetec 40mg Q6H, NoIR glasses, minocycline 75mg Q48H, frusemide 40mg Q24H, Slow-K Q24H, Magnesium 320mg and Manganese 5mg Q24H
Hi, I've had my blood tests and x rays. No longer have heart failure but still taking Slow-K and frusemide, presumably for high blood pressure. Dr suggested reducing Slow-K by taking 1 tablet every 2nd day if my levels weren't too low. My K+ result was 4.2 mmol/L.
As I still have fluid around the legs, despite the frusemide, my GP had x rays made of the heart but all is now normal.
I've been on a guided tour and was concerned about sun but had no problems. I was able to stay in the shade and as our temperatures are still moderate, was able to cover up well. The hotel provided such a huge variety of food that I was even able to keep to the diet.
The only symptoms I'm experiencing are slight SOB, a dry cough, mild headaches and shoulder/neck pain.
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Thu Nov 1st, 2007 18:41 |
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Thanks for checking in.....it's good to know you are feeling well.
To maximize safety, protocol efficacy and chance of success, we expect all members (even those who think they are doing well independently) to post a brief progress report weekly (more often only if not doing well) so Staff can catch any problems early and have details of past responses to be better able to assist you if you need help.
We are standardizing progress reporting to make monitoring and data collection easier. Please use this simple format each time you post a weekly report. Briefly list these details of your current situation only:
MP meds:
Include doses in mg & schedules for each, recent changes, number of days at current dose/schedule
Non-MP med use this week:
(List ongoing non-MP meds in your signature line)
Light exposure this week:
Symptoms:
List only those that are significant and recent. Indicate if any are intolerable. A rating scale of 1-10 is helpful.
Please check that your signature line is up-to-date (include only the initial 1,25-D and the latest 25-D). List routine measures to prevent sun exposure (NoIRs, covered up, sunscreen) in your signature line.
In your weekly report, describe your recent sun exposure (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday) and recent need for palliative non-MP meds.
See What should I know about respiratory immunopathology?
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. You will gain experience adjusting MP meds and using your personal tool kit 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. Carry on.....
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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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Willemina
Member in Phase 3
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| Location: | Perth, Australia |
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Posted: Thu Nov 8th, 2007 10:51 |
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Olmetec 40mg Q6H, NoIR glasses, minocycline 75mg Q48H, frusemide 40mg Q24H, Slow-K Q48H, Magnesium 320mg and Manganese 5mg Q48H
Hello Meg, I've updated the information above to show reduction in Slow-K and Magnesium. I'm trying that out on advice of the doctor. The only symptoms i experience are sore shoulders, and recently my elbow joints have started becoming painful. Nothing major.
I don't go out except when necessary. Not more than 1 hour in daylight and then I wear hat, long-sleeved shirt, trousers and gloves. I do my gardening early morning. Feel quite well.
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat Nov 10th, 2007 20:57 |
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Thanks for checking in. It's good to know you are doing well.
Since you have your feet on the ground 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 more immunopathology can be provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms. You could also try taking lower-dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit and could come in handy in the future if symptoms become intolerable and you need to adjust MP meds to manage immunopathology.
Let us know how it goes.........
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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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Willemina
Member in Phase 3
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Posted: Wed Nov 14th, 2007 21:32 |
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Olmetec 40mg Q6H, NoIR glasses, minocycline 100mg Q72H, frusemide 40mg Q48H, Slow-K Q48H, Magnesium 320mg and Manganese 5mg Q48H
Hello Meg, I have changed medication as you suggested. It's been a mad week. Sunday I had an all day workshop and travelled in the car 1.5 hours in 98 degrees F heat. Covered head to toe. Monday, half hour in car 100 degrees. Wednesday, rubber hoses in car broke down while I was on a hot road, no shade. Car couldn't cope with heat. Road service came after 1 hour and took over an hour to make my car temporarily functional. That left me over 2 hours in sun. Still covered with hat, long/sl shirt, gloves, long trousers, shoes. I've had more exposure to sun in 3 days than I have for months.
I saw my doctor yesterday and she wonders if it is ok for me to take CoQ10 100mg Q24H. I am reducing Slow-K and frusemide but still have lots fluid on legs and Dr is concerned about the heart. Believes CoQ10 might help.
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Fri Nov 16th, 2007 03:58 |
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It isn't safe for you to travel in those weather conditions without an air-conditioner in your car. The sun exposure and heat could have caused a fatal cardiac event. I'm happy you are okay and hope you will be able to avoid such events in the future. Please see What precautions do I need to take when I am going out or when traveling away? and Why does exposure to natural light increase symptoms?
CoQ10 is contraindicated. See Why do I have to stop my alternative treatment and avoid most supplements? Following the Marshall Protocol exactly will help your heart more than any supplement. See Heart Disease and Th1 Inflammation. Why are you taking manganese?
Take good care..........
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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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Willemina
Member in Phase 3
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Posted: Fri Nov 16th, 2007 08:32 |
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Hello Meg
So, the Co Q10 isn't on. I'm taking magnesium/manganese tablets for leg cramps. Only every second day. If I get no cramps, will reduce that. Gradually weening off frusemide and potassium.
My car has air con but it's an old car and the air con is nowhere near as good as in a new one.
Since going on Mino 100mgQ72 hrs, I am experiencing more joint pain in elbows and knees but only at night. I get very tired and sleepy but nothing unusual.
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat Nov 17th, 2007 16:08 |
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Suggest you use a magnesium product without manganese to eliminate a variable.
Many symptoms are increased by sun exposure. You may reduce these symptoms and enable your immune system to function better if you can eliminate all avoidable daylight outings. See Why does exposure to natural light increase symptoms?
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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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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat Nov 17th, 2007 16:08 |
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Suggest you use a magnesium product without manganese to eliminate a variable.
Many symptoms are increased by sun exposure. You may reduce these symptoms and enable your immune system to function better if you can eliminate all avoidable daylight outings. See Why does exposure to natural light increase symptoms?
____________________
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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Willemina
Member in Phase 3
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Posted: Sat Nov 17th, 2007 23:00 |
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Olmetec 40mg Q6H, NoIR glasses, minocycline 100mg Q72H, frusemide 40mg Q48H, Slow-K Q48H
Hello Meg, I've dropped the magnesium altogether. Will drop Slow-K and frusemide after another 3 weeks. Then K test.
Thanks for the info on sunlight. I have studied that before but it was good to read it again. I don't ever go out during the day unless essential. I have dropped all social day events and even stopped going to church. Some shopping can be done Thursday evenings but other still has to be done during the day; so do doctor visits. Last Sunday's workshop was for work and had been booked over 6 months. I no longer even take workshop bookings though that costs me. The heat during last week was unseasonal and my car problems (3 breakdowns in one week) were also unusual. Unfortunately, they coincided with the heatwave. We're back to temperatures around the mid seventees fahrenheit again, thank goodness.
Noted
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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Willemina
Member in Phase 3
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Posted: Fri Nov 23rd, 2007 00:05 |
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Olmetec 40mg Q6H, NoIR glasses, minocycline 100mg Q72H, frusemide 40mg Q48H, Slow-K Q48H
Hello Meg, I've tried the Mino 100mg Q72 but aren't getting much of an immune response. Last 2 days I've felt better than I have for years. Could even sing and that is the most telling indication of my state of health. I've only had very mild back/shoulder pains. No joint pains or sore toes like before. Not as much exhaustion. Sleeping less.
Weather's still very hot - high 90s and 100F but I stay inside. Just 2 hours this week in car. Always hat, gloves, long sleeved shirt, trousers, NoIR's. Air con in car.
I'll be coming off frusemide and Slow-K altogether in a few weeks and will then have a K test. Oedema has increased slightly since lowering doses.
What can I do to provoke a greater immune response?
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Fri Nov 23rd, 2007 02:21 |
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It's wonderful to know you are feeling so good....... but I understand your concern. For ideas about provoking immunopathology, see Why isn't the Marshall Protocol working? what am I doing wrong? and How can I tell if the MP is working for me?
Be sure it's okay with your doctor to discontinue furosemide. Let us know how it goes.........
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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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Willemina
Member in Phase 3
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Posted: Thu Nov 29th, 2007 21:43 |
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Olmetec 40mg Q4H, NoIR glasses, minocycline 25mg Q12H, frusemide 40mg Q48H, Slow-K Q48H
Hello Meg, I/ve been trying out some of the ideas listed to provoke immunopathology. With mino25mgQ12H, I'm getting the sore/stinging back, shoulders and neck a bit more and daily. Still need extra sleep during the day. Lying down relieves the back pain and itch too. I've now tried Mino100mgQ48 and 25mgQ12H.
I'm staying out of sun. Travel approx 2 hrs a week to med appointments and mechanic (car problems!) while fully covered, though the clothes aren't as thick as recommended. I can't cope with anything thicker than a long sleeved denim shirt and jeans in our weather.
My BP has gone up. Last 3 days 146/87, 139/80, 149/77, so I started taking Olm40mgQ4H 24 hours ago, in the hope that it might lower it but it hasn't happened yet.
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
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Posted: Fri Nov 30th, 2007 01:31 |
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Thank you for the update Wilmena.
Not uncommon for BP to fluctuate which is part of your disease, which should eventually level out for you as you progress. Increasing Benicar for that purpose will not likely cause a significant change in your BP. Benicar studies show the BP to stabilize at 40mg, stabilizing referring to staying at about the same level in a person without Th1 inflammatory disease. That is one reason it is not the first drug of choice in severe hypertension.
SEE: Why is my B/P high? Why does it fluctuate? for more info.
It sounds like you are managing well though, keep up the good work.
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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Willemina
Member in Phase 3
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Posted: Fri Nov 30th, 2007 22:35 |
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Olmetec 40mg Q4H, NoIR glasses, minocycline 25mg Q12H, frusemide 40mg Q48H, Slow-K Q48H
Hello, Thanks for your advice and positive words. The BP is slightly lower today. Should I be moving to Phase 2? I keep careful records and if all was going well and I was not having a bad herx, I recorded that I should should have moved to Ph2 on 25th Nov and get a questionnaire to answer.
Regards
Willemina
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sarcoidosis/lungs,hx rheumatic fever,hip replacement,125D46,frusemide, Slow-K,27/9/08 25D 8.75,NoIRs Started MP7/07 Willemina
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