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Honey
Member in Phase 3
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Posted: Sun Dec 23rd, 2007 11:40 |
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Benicar posts
MP meds:
olmesartan 40mg q8h (18 days), mino 25mg q48h (day 3 [second dose] today)
Non-MP palliative med use: none
Natural Light exposure:
90min work commute once only and rest of the week less than usual because I'm on holiday (some days with zero natural light)
Symptoms:
fatigue, warm neck pain (2/10), sinus headache (4), photosensitivity
Comments:
Photosensitivity has lessened this week - haven't needed glasses indoors except for computer/TV. Also, spoke to my Dr after Meg's last reply (in Benicar-only forum) and we've decided to stay on the all-dairy ban for now.
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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VEZ R.N.
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Posted: Sun Dec 23rd, 2007 16:31 |
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Thank you for the update H.
Looks like you are managing well. Continue all supportive measures, sun/light avoidance, rest, good nutrition and proper hydration. Have a Merry Christmas.
Warm Regards, VEZ
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Posted: Sun Dec 23rd, 2007 18:18 |
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Thanks for letting us know you are doing okay on minocycline. Please review the information threads pinned to the top of this forum so you will be able to locate answers to frequently asked questions. See What should I know about Minocycline?
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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Honey
Member in Phase 3
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Posted: Tue Jan 1st, 2008 14:16 |
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MP meds:
olmesartan 40mg q8h (27 days), mino 25mg q48h (12 days)
Non-MP palliative med use: topical rub (DeepHeat) for neck pain
Natural Light exposure:
various - some days 60+min and some not at all. Crazy schedule because of holidays and staying in other people's homes, airports, etc. during a heatwave (ugh).
Symptoms:
fatigue, photosensitivity, neck pain (0-5/10), headache (1/10), sore throat (1/10), sneezing/runny nose (1/10)
Comments:
Harder to control heat and indoor natural light exp this week, but have managed OK with extra rest, olmesartan and water. Herxing apparent but highly tolerable - maybe too tolerable? Have learned I can't walk as far on mino day 2 without running out of steam.
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Posted: Tue Jan 1st, 2008 19:20 |
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Based on your report, you could increase mino to 50mg. Finding the low enough/high enough dose level of minocycline that works for you is part of the experience gained throughout the MP journey. 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.
Stay at each subsequent dose level for a minimun of 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms. See How To Identify Immunopathology (Herx) and How to assess symptoms and What should I know about Minocycline?
Let us know how it goes........
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Honey
Member in Phase 3
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Posted: Sun Jan 6th, 2008 12:23 |
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MP meds:
olmesartan 40mg q8h (32 days), mino 25mg q48h (17 days)
Non-MP palliative med use: none
Natural Light exposure:
90-min commute x3, plus lots of unavoidable indoor natural light exp while on holidays
Symptoms:
fatigue, photosensitivity, neck pain (1/10). Hardly any herxing (that I can tell), but a few bad days after too much light exp.
Comments:
Had some moments of extreme frustration at being indoors while my friends (and boyfriend) are at the beach or pool. Also, I've been volunteering every Sunday for the past 4 years, visiting a woman who is housebound with MS, but it's been too difficult lately due to the extra sun and heat. I think I'm going to have to stop visiting this summer, which is a bit upsetting. Have also discovered after the holiday break that I'm mostly sensitive to fluorescent lighting - I only need to wear NOIRs at work, not in homes. Will try to get this modified at work.
I see my Dr this week and will ask about increasing mino to 50mg.
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Posted: Sun Jan 6th, 2008 13:24 |
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It is important that you become independant in medication management and gain experience by adjusting MP meds using your personal tool kit to manage immune system reactions. This skill will carry you smoothly through the protocol.
If your doctor knows you are getting counseling on our study site, he has agreed to allow you to decide when to increase antibiotics based on your symptoms.
It's good you are recognizing your photosensitivity. Dr. Marshall had this to say about it recently, "Not only is the sun block insufficient, the concept that it will allow you to freely move out-of-doors is flawed.
You cannot change the way your body works as it heals. Nobody, not one person, has managed to recover without drastically changing their lifestyles. I am sorry, that is just the way it is."
We've all had to make difficult lifestyle adjustments but we can assure you that it's worth the temporary 'price'. Hang in there......
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Honey
Member in Phase 3
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Posted: Sun Jan 13th, 2008 13:21 |
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MP meds:
olmesartan 40mg q8h (39 days), mino 50mg q48h (2 days)
Non-MP palliative med use: topical rub (DeepHeat) for neck pain
Natural Light exposure:
90-min car commute x4, ~2 hrs extra driving/walking
Symptoms:
fatigue, photosensitivity, neck pain/parasthesia (5/10), heat intolerance.
Comments:
What I thought was just a painfully stiff neck from sleeping on it funny was probably an extra-long herx because it happened a second time, starting on mino day 2 again, but lasted for 2 days this time. My neck herxes usually feel very different. Went market shopping and started to sweat from all the protective clothing; the neck stiffness then "broke up" almost instantly and turned into brief parasthesia, then was gone. Came back again two hours later. Weirdest thing ever, but glad it's gone now! Will know next time that it's a herx and try to adjust meds to alleviate it.
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Posted: Mon Jan 14th, 2008 03:29 |
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You are learning to identify immunopathology.....
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 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, 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. See How can I tell if the MP is working for me?
Let us know how it goes...........
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Honey
Member in Phase 3
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Posted: Sun Jan 20th, 2008 15:51 |
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MP meds:
olmesartan 40mg q8h (46 days), mino 50mg q48h (9 days) except for 25mg at last dose (yesterday)
Non-MP palliative med use: Lemsip (paracetamol drink)
Natural Light exposure:
90-min car commute x5, ~1 hr extra driving/walking
Symptoms:
fatigue, photosensitivity, neck pain/parasthesia (3/10), sore throat (2/10), eye soreness (different to photosensitivity eye pain), flu-ey feeling.
Comments:
Had 4 of the new mino dose @ 50mg q48h but felt quite flu-ey yesterday (mino day 2), like being in the throes of chronic fatigue all over again. Might have had something to do with the previous day being quite stressful at work, and also accidentally eating a spoonful of something with sunflower oil in it?
Tried extra olmesartan first, which didn't help much. So I took only 25mg of mino yesterday and plan to resume 50mg at next dose (tomorrow). Am OK now but not feeling fabulous. Will try to take it easy this week.
The good news is that I haven't needed to wear NOIRs at work for nearly two weeks now. That's pretty cool, and fast!
Noted
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Foundation Staff
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Posted: Mon Jan 21st, 2008 22:40 |
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You report not needing NoIRs at work yet list symptoms that could be due to light falling on the eyes. See The effect of light on the brain (amygdala) and Testimonials to the need to wear adequate eye protection.
You may reduce these symptoms and have an easier time with minocycline if you can eliminate all avoidable daylight outings. See Why does exposure to natural light increase symptoms? and Do car windows, cloudy skies or geographical location affect the amount of sun exposure? and Testimonials to the need to avoid light.
Let us know how it goes.........
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Honey
Member in Phase 3
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Posted: Sun Jan 27th, 2008 15:45 |
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MP meds:
olmesartan 40mg q8h (53 days), mino 50mg q48h (16 days)
Non-MP palliative med use: Lemsip (paracetamol drink)
Natural Light exposure:
90-min car commute x5, ~1 hr extra driving/walking
Symptoms:
fatigue, photosensitivity, neck pain (2/10), sore throat (2/10), flu-ey feeling.
Comments:
Tried reintroducing NOIRs at work this week. Herxing didn't change much, but there was a slight decrease in fatigue. I noticed a big effect from stress reduction, too, but I will continue to wear the NOIRs indoors a bit longer.
I have noticed a definite change in how less sensitive I am now when I have to glance at things like bright computer screens (for occasional photo editing at my job - my own monitor is dimmed), or being in fluoro-lit places. There isn't that slight "ew" feeling and headache I got from light when I first started olmesartan.
Just to clarify, that eye soreness I mentioned last week is a throwback to my chronic fatigue days. All the symptoms I've mentioned (aside from what's noted as photosensitivity) are just old ones coming back to say g'day. And the photosensitivity I note here is mainly sun-exposure sensitivity, which I don't get that often because I'm always covered up, and my daily commute is mostly tolerable. But because the photosensitivity is around the corner, should I happen to get too much sun, I list it. Should I not list it here as a symptom if I don't actually have a serious reaction? Same with the fatigue. It's in the background, but it's not anything debilitating. Should I stop listing it?
I should also note that I have decreased outings significantly in the past month. I've cancelled my weekly volunteer commitment (until further notice) after four years, am getting all my groceries delivered to my home and don't go out in daylight unless I've got an appointment that I can't get out of (i.e. medical). Aside from working from home, though (not possible), I doubt I can trim much more off my total sun exposure. Things that are avoidable are avoided!
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Foundation Staff
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Posted: Sun Jan 27th, 2008 23:35 |
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Please list the hours you are exposed to natural light.....this will help you correlate that exposure to symptoms.
Lemsip contains other ingredients besides paracetamol. Recommend you treat 'cold' symptoms with increase Benicar. Because Vitamin C affects the immune system in yet to be discovered ways, it is suggested to avoid supplementation. See My doctor thinks I have an upper respiratory infection. What should I do? (Sinus infection, cold, flu, pneumonia, bronchitis)
Based on your report, you could increase mino to 75mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the low enough/high enough dose level of minocycline that works for you is part of the experience gained throughout the MP journey. 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 it goes...........
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Honey
Member in Phase 3
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Posted: Sun Feb 3rd, 2008 15:21 |
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MP meds:
olmesartan 40mg q8h (60 days), mino 75mg q48h (2 days)
Non-MP palliative med use: none
Natural light exposure:
90-min car commute x5, ~3 hrs extra driving/walking/public transport
Symptoms:
fatigue, photosensitivity, neck pain (2/10), sore throat (4/10), eye soreness (not photosensitivity - 4/10), flu-ey feeling (4/10).
Comments:
Waited until Saturday to increase mino after 3 solid days of big herxing early this week. Had a bit of extra sun exposure yesterday that couldn't be helped but took extra olmesartan, maximised opportunities for shade and had no noticeable symptoms.
Had a bone density scan this week - results show my bone density has decreased since I was last tested (six years ago, I think). My lower spine is now in the osteoporosis range, so I've changed my profile to reflect this. T-score for spine was -3.2 and for hip was -2.3. Not great news. And although my energy levels have been pretty good, I don't have enough energy to do any sort of weight-bearing exercise (and haven't for at least three years). About 20 minutes of walking is all I can manage at this point, maybe once or twice a week. I'm hoping this will increase in the near future.
Curiously, there was about a month when I began avoiding D foods, but before olmesartan, when I felt great and was able to walk for over an hour with no ill effects. Once I started olmesartan, I had less capacity for walking than even before avoiding D foods. Now I'm close to my usual for the past three years.
How long can I expect to wait before I see the bone loss start to correct itself on the MP? I'm not sure how often I should get retested, but I know my mom especially is pretty concerned.
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Foundation Staff
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Posted: Sun Feb 3rd, 2008 18:15 |
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Thanks for letting us know you are tolerating symptoms with 75mg mino despite considerable natural light exposure.........
Your bones lost density the past six years because of Th1 inflammation and elevated 1,25-D. See Osteoporosis, osteopenia and Th1 illness.
Based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
Keep up the good work........
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Honey
Member in Phase 3
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Posted: Sun Feb 10th, 2008 15:47 |
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MP meds:
olmesartan 40mg q8h (67 days), mino 75mg q48h (9 days)
Non-MP palliative med use: none
Natural light exposure:
90-min car commute x5, ~1 hr extra driving/walking
Symptoms:
fatigue, photosensitivity (9/10), neck parasthesia (2/10), sore throat (3/10), flu-ey feeling (3/10).
Comments:
Have noticed photosensitivity gradually increasing throughout the week - starting with driving home from work in the afternoons this week, I noticed for the first time that the darkest NOIRs weren't quite keeping me 100% comfortable. Nothing major, though, until yesterday, when I noticed the photosensitivity even more upon waking up.
I then spent 20 minutes outdoors (covered up) to inspect a nearby house I might be moving to, came back to a dark apartment and had extremely painful eye sensitivity. It was far less sun than I usually get in a work day or even the previous Saturday.
Have taken olmesartan every 4 hours round the clock this weekend and have had to wear 2% NOIRs in a darkened bedroom with the lights out. Very painful at times and a bit distressing. I spent most of yesterday and today in bed, sleeping, because I couldn't even read the paper with NOIRs on - either too dark to see or too painful. It's settled down a bit now, and I was able to cook some meals for myself today, but up until this week I've been able to forego NOIRs in my home.
I'm guessing this is either the 75mg mino kicking in or possibly a reaction to some restaurant food I ate on Friday night (that might have had something with vit-D in it). I'm just hoping this doesn't affect my ability to work or to drive to and from work in the daylight, which previously had been no problem, because I need to be able to support myself.
Any suggestions on what I might try the next time this happens (or if it doesn't go away)?
I also noticed the last time I had near-intolerable symptoms was on dose #4 of 50mg mino - this weekend was dose #4 of 75mg mino. Perhaps this is just my body's reaction to the next dose kicking in?
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Foundation Staff
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Posted: Sun Feb 10th, 2008 18:46 |
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I agree with your observation that the fourth dose of 75mg mino provoked the increase in photosensitivity. In order to ensure you can continue to work, take every possible precaution to avoid lights, both at work, commuting, at home and on weekends. Please see Protecting Your Eyes and How to Avoid Sunlight and Bright Lights and What precautions should I take when I must go out or when traveling?
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 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, 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.
Let us know how it goes..........
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Honey
Member in Phase 3
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Posted: Sun Feb 17th, 2008 12:51 |
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MP meds:
olmesartan 40mg q8h (74 days), mino 75mg q72h (8 days)
Non-MP palliative med use: none
Natural light exposure:
90-min car commute x5, ~2 hr extra driving
Symptoms:
fatigue, photosensitivity, neck parasthesia (3/10), sore throat (3/10), flu-ey feeling (5/10).
Comments:
This week was much better. The extreme photosensitivity started to decrease on Monday and was almost back to previous levels by Tuesday. Car trips and life in general are tolerable again.
Switched mino dose to q72h and have noticed more extremes - much bigger, all-day herxes and much better good days. In fact, I have started to call them "superhero days" because I am full of energy - almost like having caffeine - and can't even nap when I try. Today is my third superhero day (like clockwork on mino day 2) and I've gotten so much done. It's nice to be able to say I am now starting to notice improvements since starting the MP.
I think I might stay at q72h and increase mino to 100mg on Tuesday.
Noted
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Honey
Member in Phase 3
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Posted: Sun Feb 24th, 2008 15:18 |
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MP meds:
olmesartan 40mg q8h (81 days), mino 100mg q72h (6 days)
Non-MP palliative med use: none
Natural light exposure:
90-min car commute x4.5, ~2 hr extra driving/walking
Symptoms:
photosensitivity, neck pain/parasthesia (3/10), sore throat (4/10), flu-ey feeling (3/10).
Comments:
My superhero days have stopped since increasing to 100mg mino, but I probably have a bit more energy all around. I've taken fatigue off the list of symptoms.
Dr has given me a prescription for the phase 2 antibiotic and told me not to come back for a month. Am getting my 25D retested this week.
Not sure if I should stay at 100mg q72h for at least 3 more doses, or if I should go back to q48h. Herxes aren't too strong, but I know what happened at dose 4 the last two times, so maybe I should be patient.
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Foundation Staff
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Posted: Sun Feb 24th, 2008 22:06 |
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Based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
Before you proceed to phase two, ask your doctor about the tests you need to monitor your progress on the MP.
Keep up the good work.............
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