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ShrnHml
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Posted: Sun Jun 5th, 2005 00:49 |
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SEVENTH WEEK NOT - FULL PROTOCOL MP interrupted to deal with shingles
Still dealing with shingles (now 3 weeks) but it is getting better. The worst part is dealing with the aftereffects of Prednisone, which are nausea and hunger pains together, feeling nervous and jittery, and feeling generally “unwell” all over.
Question: Is it time to resume Benicar?
I hate the thought of putting anything else in my stomach while feeling so punk. On the other hand, Benicar may be just what I need to help recover from Prednisone.
Any input would be appreciated. ...........Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
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Posted: Sun Jun 5th, 2005 01:00 |
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Sharon
I am not sure what your Rx schedule is re the prednisone but here is the WEANING FROM STEROIDS doc for your information ..
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Jun 12th, 2005 19:25 |
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EIGHTH WEEK - NOT FULL PROTOCOL MP interrupted to deal with shingles and after effects of Prednisone
Here's a recap: 4 wks on Benicar, 4 wks on full protocol, 4 wks dealing with shingles and after effects Prednisone...nausea and jitteriness.
That's three months, and I feel like I've been spinning my wheels. I feel like I'll be starting from zero again with nothing to show for my efforts. But I still don't feel good enough to resume Benicar, as it made me feel worse when I started taking it.
Hopefully, by next week I'll be ready to resume full MP.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Jun 20th, 2005 03:05 |
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NINTH WEEK - NOT FULL PROTOCOL - MP interrupted to deal with shingles and after effects of Prednisone
I'm frustrated because I am still not feeling well enough resume the MP.
The shingles are nearly gone, but the effects of Pred. are still with me. My neighbor's German shepherd started on steroids (for erlichea) about the same time I did, and he has not completely recovered either. Strange that I should be comparing myself to a dog, but it's my only point of reference. It tells me that the after-effects of steroids are long-lasting.
I just wish there was something I could be doing in this "down time" towards cure. What about taking mino? Wouldn't that work my bacteria load down in prep for resuming the full MP?
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Posted: Mon Jun 20th, 2005 03:49 |
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Sharon,
The Benicar blockade is what has helped many of our members to successfully wean from Prednisone. It might have allowed your immune system to begin killing bacteria thus causing Herxheimer reactions but I think it's time to resume Benicar to see how it affects you this time around. You might be pleasantly surprised.
Best,
Meg
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Jun 20th, 2005 03:58 |
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Okay, Meg.....I'll do it!
Thanks for responding.......Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Jun 27th, 2005 14:48 |
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TENTH WEEK NOT FULL PROTOCOL - MP interrupted to deal with shingles and after effects of Prednisone
At Meg’s suggestion, I resumed Benicar this week as an antidote to after effects of Predsisone. What a difference! I began to feel better immediately..….so good that I am fearful of going back on minocin. I have not had a feel-good day since starting Benicar over three months ago.
This week has been so good that I painted my living room. While on B and B+M, I did not feel like doing ANYTHING. The really down side is that much of my self-esteem is correlated with how much I can accomplish.
A big change is that my adrenalin hormones seem to have shifted back towards normal. For years I have been sluggish, brain-fogged and unmotivated during the day but picking up at night… especially getting energy around 1100P and going to bed around 2-300A. Now I am getting tired and waking up at more normal times….with some energy and motivation.
I plan to do B for one more week…...then get back on B+M next week.
Thanks…..Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Tue Jun 28th, 2005 00:06 |
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Sharon
you may begin the mino when you are ready.. as per phase one doc and ...
may still be helpful to check with the WEANING FROM STEROIDS doc as posted above to assist you in weaning from prednisone, - and now to move onto mino, - .. says in part ..
"......... Benicar, an angiotensin receptor blocker, can greatly relieve these symptoms and ensure weaning success ....... Th1 inflammatory symptoms, including pain, can continue to exacerbate for a few weeks after the last dose. Some patients who have weaned from prednisone report that they continue to experience the side effects of steroid therapy, such as anxiety, depression and irritability for weeks or months following treatment so give yourself time to adjust before starting minocycline and keep this in mind as you ramp up the minocyline dose slowly.
After you have weaned and proceed on the MP, keep in mind that prednisone's effect on the immune system may linger for months and could, therefore, inhibit the Herxheimer reaction." <<
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Tue Jun 28th, 2005 02:35 |
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Thanks, Barb....very helpful.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Frans
Member in Phase 2
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Posted: Tue Jun 28th, 2005 12:16 |
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ShrnHml wrote: The really down side is that much of my self-esteem is correlated with how much I can accomplish.
Sharon, consider doing the MP as the best thing you have ever done for yourself and feel good about that, because you have chosen a difficult path, which will ask a very lot of you and which a lot of ´healthy´ people wouldn´t have the courage for. It will be the accomplishment of your life !!!
I applaud you for fighting for your health like you do !!!
Focus on the end of the tunnel where your health lies !!
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Frans
Member in Phase 2
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Posted: Tue Jun 28th, 2005 12:16 |
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| oops, sent twice... Last edited on Tue Jun 28th, 2005 12:17 by Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Wed Jun 29th, 2005 00:58 |
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Thanks, Frans......I feel in need of support, and what you said pumped me up. Hopefully it will be better this second time around with mino. The Benicar has been much better this time.....even giving me a sort of high. At least I'm accomplishing things I could not do before. Oooops! There's that accomplishment thing again.
I hope you are doing well.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Jul 4th, 2005 04:26 |
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TENTH WEEK NOT FULL PROTOCOL - MP interrupted to deal with shingles and after effects of Prednisone
Recap: 4 wks on Benicar, 4 wks on full protocol, 6 wks dealing with shingles and after effects Prednisone.
I thought I could get back on Mino this week, but have not felt well....fatigued, very sluggish, no motivation to do anything, including going to the grocery store......not good when you live alone. I even missed the memorial service for the husband of a very close friend. Seems like I'm one of those who herxes on Benicar alone.
So I really am starting again from scratch.
Barb.....should I restart in the Benicar alone progress report under the heading "Second Try for Sharon"? It feels to me like I'm going to have to be on Benicar one month like I was before. It seems logical to me to do it this way.
Thanks as always.......Sharon
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Mon Jul 4th, 2005 04:38 |
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Sharon
Thank you for posting..
The symptoms you describe "have not felt well....fatigued, very sluggish, no motivation to do anything" can be symptoms of a running immune system, - that may be a sign that you need to begin mino 25mg QOD to manage it.. that should help..
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Jul 4th, 2005 05:07 |
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Hi Barb......
What is a "running immune system"?
Thanks.....Sharon
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Mon Jul 4th, 2005 05:15 |
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Sharon
The benicar and diligent avoidance of light will enable the immune system to see and kill the bacteria. In some people it wont stop when the abx are stopped or decreased. Taking the mino will usually delay the herx.
see Why do we take minocycline only every other day? Why do I feel worse on the second day?
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Jul 4th, 2005 22:24 |
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Barb......I see the logic of taking some mino, as I am definitely herxing on Ben + light avoidance. However, I recall reading that people with a "sky high...over 60" D125 should take more than two weeks to work the load down before starting abx.
I have been off of B+M for about eight weeks, so it seems as if I should proceed as if just starting. Still, I'm open to taking some mino if you still feel it's a good idea.
TIA..........Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Tue Jul 5th, 2005 11:24 |
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Sharon
you are not really starting from scratch in that you have been diligently avoiding light and D, and your 1,25D has been low enough now for you to be herxing.
If your symptoms of "have not felt well....fatigued, very sluggish, no motivation to do anything" are uncomfortable for you, beginning the mino is a way of managing the herx..
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Wed Jul 6th, 2005 22:35 |
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Barb......
I felt encouraged to realize that I really have been doing a good job of avoiding light and D from food. That would definitely explain the herxing from Ben.
I think I'll go on mino Friday or Sat.
Thanksk for your response......Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Wed Jul 6th, 2005 22:38 |
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Frans.........thanks for your words of encouragement.
Part of my problem is that I live alone. I do have a close friend/neighbor, but I still feel so alone in this endeavor. Thank heavens for this board.
I have not seen any posts in your thread. How are you doing?
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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