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Aussie Barb
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Posted: Wed May 4th, 2005 01:17 |
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Hi Sharon
notifying you that the FAQ What precautions do I need to take when I am going out or when travelling away? has been updated to suggest that Q12H mino dosing schedule may be more effective than Q24H..
Thanks, 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 May 4th, 2005 02:35 |
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Barb.....this may not even be needed now that have a hat with a cape in the back and a matching face cover from Solumbra. With my big NoIRs and gloves, there's not a bit of skin showing. Am I as protected as I think?
The problem will be when the weather gets hotter (and it can get real hot and humid here), and I will want to "cheat" on having all skin covered.
My life is increasingly a nocturnal one. I stay up 'til 2 or 3A....doing things I would normally do during the day. Then I sleep a good part of the day. I live alone, so can make my own schedule; but I wonder if anyone else has said that they feel bad during the day, sleep, and then feel reasonably well at night.
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
Member in Phase 3
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Posted: Wed May 4th, 2005 20:43 |
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Hi Sharon
The best protection of all is to stay indoors in the daytime unless absolutely necessary.. and if you have read all the Light papers and are using all the protection, you will know by trial and error what works for you..
There are some who do find that they become more nocturnal at some stages.. the symptoms are usually changing as time goes on as we come back to health.. and being nocturnal is a good help to diligent avoidance of light..
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: Thu May 5th, 2005 14:04 |
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Good morning.....
It is Thur a.m. here, and I have been in a 24 hr. nearly incapaciting herx. It seems as if the first day is always the worst for me.
My last 25mg mino was Tue evening. Wed was a wipeout day; so was last night.
I hesitated to take the 12mg as suggested because of being an "early reactor". Is this acceptable logic or a result of brainfog.
Sharon
P.S. I have had some unusual spates of coughing that wake me up in the morning....also unusual sinus drainage.
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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: Thu May 5th, 2005 19:08 |
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Sharon,
for intolerable herxing, please see F AQ My Herxheimer reaction is too strong. What should I do?
"When Herxheimer symptoms continue to be intolerable you should take minocycline 12.5mg every 6 hours or 25mg every 12hrs. This dosing schedule dampens the Herxheimer reaction because the dose of mino is maintained at the less effective level." and etcc...
all best, 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 May 8th, 2005 03:42 |
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THIRD WEEK - FULL PROTOCOL
This was a wash-out/wipe-out week. I took 25mg Sun night and Tue night only.
Tuesday night - I engaged in a physically demanding job trying to do a home repair. It was more exertion than I knew was good for me, but it was a job that had to be done.....and I'm the only one here.
Wednesday morning - I woke up feeling positively awful....could hardly get out of bed. I had a deep-in-the-chest, loose cough as in bronchitis. Yet, in the past my bouts with bronchitis have been preceded by a sore throat. Since I could think of no logical events leading to bronchitis, I assumed it was a FIRST day herx.
Then I remembered the physical exertion of the previous evening and was left wondering: 1) was it herx, 2) was is post-exertional stress, or 3) bronchitis. I felt it was more likely 2) or 3) and just stayed in bed most of the day sleeping.
Thursday morning - I was still feeling the same....stayed in bed all day...just up for very light meals. Considered a dose of mino, but decided it felt more like I was plain old sick with bronchitis. There was "rumbling" mucous in my chest.
Friday morning - Still the same....now pretty sure it's bronchitis. Feeling bad enough not to take any chance with mino for fear of feeling even worse.
Saturday morning - Feeling a little better; cough much improved. Slept all morning. Did some deskwork this afternoon. Feeling not well but okay.
So I have gone four days without mino and don't feel well enough to start again tonight (Sat). Projected improvement will have back on mino tomorrow (Sun).
Gosh, it's good to have someone to tell this to. I know it's all trivial in the "scheme of things", yet someone will pay attention. I'm lucky to be participating in this pioneering work.
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: Sun May 8th, 2005 16:40 |
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Sharon,
Tuesday night - I engaged in a physically demanding job trying to do a home repair
Maybe this raised your body temp a little, just enough to make the mino penetrate your tissue a little faster than normal, which could have led to the first day herx.
Hope you will feel better soon.
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon May 9th, 2005 03:32 |
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Frans......that's what I mean. You know so much and seem to retain it.
I had read something about body temp being a factor, but it was in one eye and out the other. I will try to remember that exertion = higher body temp = mino getting to bugs faster.
I'm going to get back on sched tonight (Sun) with 25mg.
Best....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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sat May 14th, 2005 15:25 |
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FOURTH WEEK FULL PROTOCOL
I can't tell much difference between day 1 and day 2 on the mino...discomfort on both days but not intolerable.
Symptoms this week include ribcage pain, fatigue, cough, stiff neck, three raised red bumps on skin of torso that itch AND hurt, continued cough, muscles feel mired in molasses.
I have such a "blah" feeling about everything. Nothing seems to interest me or give me any pleasure. EVERYTHING seems to be just too much trouble. I take Effexor for depression, and it has done its job well over the years....until now.
I hope this goes away, as I need at least a little pleasure, satisfaction, fun, etc.
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: Sat May 14th, 2005 19:09 |
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Hi Sharon
You may wish to speak to your Dr about your Rx meds...
& or you may wish to take the mino more frequently / daily for a day or 2 to see if the herx is more tolerable.. My Herxheimer reaction is too strong. What should I do?
because the mino half life is 17H, taking it 24H may delay the herx to more tolerable for you at this point..
Dr Marshall says: "If a 5 day schedule works best for you at any point, then 'run with it' and if 2 days works best, then use that. During the 2 years (or so) until the herx finally disappears, you will have to keep up a steady bug-kill. No more killing than is comfortable. Everybody has to figure out their own pace." ..Trevor..
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 May 15th, 2005 00:58 |
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Hi Barb......thanks for checking in on me.
I will talk to doc about depression. It's still hard to believe how these CWD bacteria affect EVERY part of your body and mind.
I seem to have lost my taste buds.....everything tastes the same. Has anyone else reported this?
Best.....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 May 15th, 2005 01:02 |
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Hi Sharon
I have the lack of taste also distorted taste .. along with esophageal herxing.. a feeling of reflux, and also, when swallowing it hurts all the way down, and a bubble of air is swallowed at the same time as drinking water..
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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Aussie Barb
Member in Phase 3
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Posted: Sun May 15th, 2005 01:06 |
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re effect on whole body:
Dr. Marshall has created a diagram summarizing some of the key relationships between the body's hormones and 1,25-D.
You can access it at
http://autoimmunityresearch.org/hormones.pdf
and also re effect on amygdala see HERX .... What is it?
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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 May 15th, 2005 02:29 |
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Barb......sorry that you have no taste either.
It helps to know that it's herx and not some permanent loss.
The amygdala information was very interesting.
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Tue May 17th, 2005 03:58 |
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For several days I have been having extreme pain in the side/back area. The pain seemed to be inside (muscular) and outside (cutaneous) at the same time. It helps to lie down with some mild pressure from a small pillow on that area. So basically I've stayed in bed for a couple of days. Then, I noticed about 10 red welts of different sizes and shapes on this side/back area.
I did a search on "shingles" and saw Meg's advice to stop mino in order to see if the shingles go away. Thus it can be determined if they are herx or shingles.
So I stopped mino...last dose being at 900P last night (Sunday). The pain is still extreme, and I'm betting it's herx but need to rule shingles out.
Am I on the right track here? And how long can a herx last once one has stopped mino?
Many thanks.....Sharon See edit below:
I chose to take Benicar at 3 per day level......20mg Q4H, 40mg at night.... because of trying to keep costs down. However, to ease this pain I would be willing to go to 20mg Q3H for a limited time if this would help with this temporary (I hope) pain.
Last edited on Tue May 17th, 2005 04:22 by ShrnHml
____________________
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: Tue May 17th, 2005 04:25 |
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Sharon
here is the link to that advice.. Shingles Posts in which Meg says
"The main reason to treat shingles (herpes zoster) with an oral antiviral medication is to avoid the painful complication of post herpetic neuropathy. This is a permanent burning pain that occurs along the nerves that were the site of the infection. The antivirals must be started within 48 hours of a shingles outbreak to be effective though. Then they will shorten the course of the infection and prevent PHN.
see shingles. Have you consulted your doctor... does s/he consider that it might be a cutaneous Herxheimer reaction?
What you are experiencing now may be a Herxheiemer reaction. Stopping the antibiotic/s to see if the rash goes away might help your doctor diagnose shingles versus cutaneous Herxheimer reaction. Taking an antiviral for shingles is not contraindicated while on the MP."
How long till the mino herx stops... is individual.. in some it may stop after 48H and some it may take longer...
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 May 17th, 2005 04:58 |
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Barb...I hope this is herx, not shingles.
The link you gave me to shingles was very good.
I called doc today and can't get an appt for three weeks. If the welts do not go away in a few days, I'll call him again and try to get an emergency appt.
The welts do not have blisters yet.
Please see the edit to my last post on changing Benicar schedule. (I know, I should have made a separate post of it.)
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
Member in Phase 3
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Posted: Tue May 17th, 2005 08:43 |
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Sharon
from what I understand in Meg's post, the Dr needs to see you within 48H for there to be any benefit in going off the abx.. "The antivirals must be started within 48 hours of a shingles outbreak to be effective though"
Otherwise from what I understand, you may as well stay on the MP...
and for the pain, yes taking the benicar like that may assist your relief better than Q8H.. the other thing that may help is taking the mino frequently as for intolerable herx, to delay the herx symptoms... My Herxheimer reaction is too strong. What should I do? you will know fairly quickly that way if you have some relief from taking the mino.. and for how long the relief lasts..
Barb.....
later edit May18th for further info:
Shingles
Need to stop M.Protocol
____________________
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 May 23rd, 2005 03:51 |
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FIFTH WEEK - NOT FULL PROTOCOL
I stopped mino AND Beni this week because my brain could not keep track of the various med for shingles and MP. Doc had me on 20mg Pred 3xd 1st two days, 20mg 2xd 2nd two days, etc........down to 1/2 per day ending this mid week. That plus Valtrex 3X day put my brain over the top.....even with a chart I could not keep it straight, and that was increasing my anxiety. Add to that the Ambien he prescribed to help me sleep while on Pred and the pain med also. (I had gone 36 hours w/o any sleep!)
Shingles not only gives you a painful rash, but it makes you feel sick all over. The latest I heard from Meg was that if you take the meds before blisters form on the welts (even though it might be more than 48 hours), you have a good chance of preventing the post herpetetic thing that can last a lifetime.
When I finish the shingles meds, I'll get back on Beni for a few days to build up my blockade again before starting back on mino.
In for the long haul......Sharon
Last edited on Mon May 23rd, 2005 04:05 by ShrnHml
____________________
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: Sat May 28th, 2005 04:53 |
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SIXTH WEEK - NOT FULL PROTOCOL
Another discouraging, uncomfortable week with no progress made on the MP.
Shingles (some wierd disease OTHER people got) is a body-wide viral infection lasting up to three weeks. I am still running a temp and feeling punk. The worst has been the Prednisone... affecting both body and mind. I feel hungry and nauseated at the same time. I feel jittery and tired....spaced out and "on guard". It's like an alien presence has invaded my body/mind.
Last day of mino: May 15 // Last day of Ben: May 17
With luck, I'll resume MP this week.
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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