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virginiasydney
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Posted: Sun Jun 14th, 2009 01:03 |
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Dear All,
Would you be kind enough to advise ?
I have now been on Olmetec/Benicar for two months, currently 3x a day, previously up to every 2 hours and sublingually.
My D is now down to 19.6 from 44. I have not been able to tolerate the mino to date - dangerous IP. I took 25mg - to start with 48 hours apart, I also tried 72 hrs apart. I took it 8 times. The IP was frightening.
What do I do next ? How long do some people stay on Olmetec only ? I've read everything on the site and I understand the MP is the MP - is there anything else to take besides the mino ? Is it possible to start with one of the other antibiotics ? Should I be trying the mino 6hrly for example ?
Worst current symptoms:
fatigue - in bed a lot, earache, neck ache, skull bones aching
Thank you for your time and advice.
Virginia
Last edited on Sun Jun 14th, 2009 01:04 by virginiasydney
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CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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edj2001
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| Location: | Allen, Texas USA |
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Posted: Sun Jun 14th, 2009 01:39 |
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Hi Virginia,
If you are experiencing IP you are killing bacteria. That's good. Stay there until you can tolerated the abx. The important thing is to control the IP so it is tolerable. There is no advantage to move on if the IP becomes intolerable. This is a marathon so you must not "hit the wall". Plan to pace yourself at an IP level you can live with.
Check out the updated phase 1 guidelines. It recommends 40 mg benicar every 6 hours with more if necessary.
http://autoimmunityresearch.org/phase1.pdf
Gene
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Sarcoidosis 1998| MP Dec 05| Gene's Story| Perspectives|
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virginiasydney
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Posted: Sun Jun 14th, 2009 01:54 |
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Hello Gene -
Do you mean that I should stay on the Benicar only until there is no IP at all, including fatigue, which is my major symptom/problem ?
Thank you 
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CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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edj2001
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Posted: Sun Jun 14th, 2009 02:06 |
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Hi Virginia,
No, you need to kill the bugs and that requires IP. However, you must keep the IP tolerable so you can live your life. Your IP will be the symptoms of your disease plus some your wern't aware of.
I understand your fatigue. It was also necessary for me to sleep a lot and that included naps. You will need to adjust your lifestyle to allow for this. I don't know any other answer. In my case I had fatigue and sleep was the only solution. However, that was also one of my symptoms before I started the MP so nothing really changed except on the MP I could look forward to getting well. Others have insomina and I think I prefer being able to sleep. Besides while asleep you are not aware of the physical IP 
Gene
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Sarcoidosis 1998| MP Dec 05| Gene's Story| Perspectives|
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virginiasydney
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Posted: Sun Jun 14th, 2009 02:11 |
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Hi Gene,
Ok - thanks very much for your help
Virginia
____________________
CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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virginiasydney
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Posted: Mon Jun 22nd, 2009 02:03 |
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Dear All,
Does anyone have any idea how I would judge when to try minocycline again ?
For example - would it be best to wait until D-25 is down to 12 (currently 19.6 down from 44 in 2 months) ?
Thanks,
Virginia
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CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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markt9452
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Posted: Mon Jun 22nd, 2009 11:44 |
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Virginia have you discussed with your doc the possiblity that the imovane might be affected by the mino somehow? I know that it does react with other antibiotics erythromycin, rifampicin etc. and can cause neuro herx-like symptoms if the level of imovane is out.
"...Rifampicin causes a very notable reduction in half life of zopiclone and peak plasma levels which results in a large reduction in the hypnotic effect of zopiclone. Phenytoin and carbamazepine may also provoke similar interactions.[91] Ketoconazole and sulfaphenazole interfere with the metabolism of zopiclone.[92] Nefazodone impairs the metabolism of zopiclone leading to increased zopiclone levels and marked next day sedation.[93]..."
http://en.wikipedia.org/wiki/Zopiclone
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Th1-Lyme Symptoms 125D20 D25<10 Ph1Feb08 Ph2Apr08 Ph3Oct08 daily exp covered NoIRs| MyStory|
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Kelly
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Posted: Mon Jun 22nd, 2009 12:20 |
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Hi Virginia
I'm just starting week 5 and having a similar experience to you. I did 2 weeks on Olmetec, then started 25mg Mino every second day.
I'm also very tired but finding it nearly impossible to get comfortable enough to sleep. If I do fall asleep, I wake up because some part of me is hurting or uncomfortable.
I think I read somewhere you're a neurosarc person, which is also my probable diagnosis.
My first 2 doses of Mino did nothing and I got a bit worried about that but since the third dose, I've been hit with nearly every symptom I've ever had all at once. My neck keeps freezing up and the base of my skull becomes agonising...the only way I could persevere has been to take an anti-inflammatory (I know you're not supposed to) each morning and a couple of Panadeine morning and evening, as well as the Mino. That's allowed me to keep the neck and skull pain tolerable and keep taking the Mino. Think it's going to take me a while to move up from 25mg though, as I'm having huge neuro IP issues, affecting my voice, ability to chew and swallow, and my breathing. Had one of the worst days of my life yesterday with that...couldn't eat at all all day and every time I took even a few steps, I couldn't breathe...terrifying!
Think I have angina as well and wondering whether I should increase the Olmetec to 6 times daily...not sure.
Anyway, you're not alone in having your rough time just starting.
Take care,
Kelly
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Probable sarc/neurosarc; Initial D1,25 83.8pg/ml & D25 24.4ng/ml; Started Phase 1 May '09; Medications - Olmetec x 6 daily + 100mg Mino every 2nd day; Using Noirs and avoiding light; Latest D1,25 42.5pg/ml & D25 13.6ng/ml
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Cynthia Schnitz
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Posted: Mon Jun 22nd, 2009 19:39 |
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| Kelly, for me, extra Benicar, especially sub-lingual, acts as an anti-inflammatory. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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Kelly
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Posted: Mon Jun 22nd, 2009 23:40 |
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| Thanks, Cynthia...I'm thinking extra Benicar is the way to go but being a 'newbie' at all this, a bit nervous. My heart is already pounding so very hard that I'm a bit nervous the extra Benicar will make it pound even more! Nevertheless, I'll up the Benicar and see what happens. Thanks!
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Probable sarc/neurosarc; Initial D1,25 83.8pg/ml & D25 24.4ng/ml; Started Phase 1 May '09; Medications - Olmetec x 6 daily + 100mg Mino every 2nd day; Using Noirs and avoiding light; Latest D1,25 42.5pg/ml & D25 13.6ng/ml
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virginiasydney
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Posted: Tue Jun 23rd, 2009 04:48 |
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Hi,
Thanks so much for posting this - it sent a shiver down my spine as soon as I read it. I followed the wikipedia link - sounds awful - I think I'm in for a weaning process.
I'm very grateful to you.
All the best,
Virginia
____________________
CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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virginiasydney
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Posted: Tue Jun 23rd, 2009 04:50 |
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Hi Kelly,
Thanks for posting. Thinking of you and wishing you well.
Hang in there !!
Virginia
____________________
CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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virginiasydney
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Posted: Tue Jun 23rd, 2009 04:58 |
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I wonder if the mino reacts differently because I'm taking the Imovane. I'll discuss with doctor.
Thanks again,
Virginia
____________________
CFS No steroids Current meds - Imovane and mersyndol for sleep,D-25Jul08 13, Feb09 44(supplementation)started MP April 20 Benicar 6xhrly no abx. tried Mino8x 28/4-15/5
D-25 19.6 may 27 low lux NoIRS
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