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Caitiegirl
Member in Phase 2
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Posted: Fri Sep 25th, 2009 01:02 |
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Does this mean that mino could be used specifically for an overdose of light. Does is make sense to frequent dose mino along with our extra Benicar if we have had excess exposure to sunlight?
Mindy
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Caitlin(18) lyme, seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/12/09/5.7, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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Dr Trevor Marshall
Research Team
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Posted: Fri Sep 25th, 2009 01:29 |
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Mindy,
Members were using frequent mino dosing a year or two ago, but it proved very difficult to get the dosing correct. Additionally, there were problems when they eventually had to wean off the high doses of mino. We no longer suggest people try this, guaifenesin works for some people, and also we now realize that it is not so important to keep the antibiotic dose at such a high level, and more important to ramp up the Benicar dose to achieve palliation.
Take another look at the new phase1 guidance document, this stuff is in there...
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Caitiegirl
Member in Phase 2
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Posted: Fri Sep 25th, 2009 02:02 |
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I realize the changes in the new Phase 1. Caitie is just lucky enough to have a seizure when there is too much light exposure so I wanted to make sure we weren't overlooking something obvious. We have had mixed results with mino but thought of it more as something to help palliate symptoms of bacterial die off not really directlly affecting 1,25. Thanks.
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Caitlin(18) lyme, seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/12/09/5.7, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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Russ
Member in Phase 3
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Posted: Fri Sep 25th, 2009 03:40 |
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Dr Trevor Marshall wrote: Members were using frequent mino dosing a year or two ago, but it proved very difficult to get the dosing correct. Additionally, there were problems when they eventually had to wean off the high doses of mino. We no longer suggest people try this
During my 3+ years I have had an extremely difficult time keeping my IP at a tolerable level, primarily due to neuro herx. More frequent Benicar reduces some symptoms but increases others (due to the increased VDR activation), so I have settled in at 40mg every 5 hours as a sort of compromise. But I still could not get things down to a tolerable level until recently changing my Mino dose to 50mg every 24 hours. Does this fall under what is no longer recommended due to too much immunosuppression and difficulty weaning? Or is this ok if it is what is working for me? I seem to still be having IP and I was very excited about finally seeming to find a "zone" where things were tolerable.
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Lyme, MCS | Phase 1: Jul '06 | Phase 2: Nov '06 | Phase 3: Jul '07 | 25D: 5 ng/ml (Oct '09)
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TikBitten
Member in Phase 3
| Joined: | Thu Mar 13th, 2008 |
| Location: | USA |
| Posts: | 61 |
| Status: |
Offline
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Posted: Tue Oct 13th, 2009 00:19 |
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That was a great question Russ, did you ever get an answer?
I've found the mino to be a wonderful palliator (is that even a word?) and, as such, am reluctant to so swap it out of the ABX mix, ever. I have tried on two occasions to take a break from ABX's and struggled so dearly that I had needed to resume dosing with the mino within 72 hrs.
Regards,
TB
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Neurborreliosis 8/05|25SecD=46 1,25SecD=62 10/07|Avoid Sun & 25SecD since 10/07|Started NoIRs 3/08|25SecD=18 3/08|Ph1 3/08|25SecD=17 6/08|ModPh2 6/08|Ph2 9/08|Stopped NoIRs Fall 08|Ph3 1/09|25SecD=13 3/09|25SecD=10 5/09|25SecD=11 7/09|25SecD=15 9/09
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Dr Trevor Marshall
Research Team
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Posted: Tue Oct 13th, 2009 02:26 |
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50mg every 24 hours should be fine.
I would guess around 100mg q24h in a person of normal build and weight ought to be the highest you want to go. You should see a little pulsing, as long as you don't drop the interval below 24h. The pulsing will help you dose it properly.
ps: sorry I missed this question before
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