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ShrnHml
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Posted: Sun Apr 17th, 2005 21:07 |
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last Benicar Post Here... I took my first 25mg dose of mino last night. Several hours later I noticed heart palpitations and a slightly higher pulse rate. It didn't seem much to worry about.
Today I feel better than I have in a while.....a few new aches and pains here and there but not bad at all.
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: Sun Apr 17th, 2005 22:46 |
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Hi Sharon
welcome to full protocol.. and thank you for posting..
re your symptoms: as a precaution I will post these FAQs for you... What is a cardiac Herx? When should I be concerned?
My Herxheimer reaction is too strong. What should I do?
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 Apr 18th, 2005 05:49 |
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Thanks, Barb....
I have been copying posts from this site since July. Just a few days ago I went through my MP file and rearranged everything. Now I have a separate folder for heart Herx. I did that because I thought that might be my "weakest link".
It's so nice to know that you are on top of things and are there to welcome me to the full protocol.
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 Apr 18th, 2005 22:33 |
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Day 2 - full protocol - early evening
I definitely feel worse than yesterday, but no more than the worst days I've had in the past 25 years. Can it be this easy? Are the harder days to come? Did staying on Benicar for four weeks put me in a better position to handle this?
Late evening (editing)
Ugh! It's hit me.....like a ton of bricks. It's not unbearable, but it seems I read in a post some time ago that you should skip the next dose of mino if you feel really bad. I have a dental appt tomorrow, so have to get out.
Are there any people for whom mino every THREE days is acceptable? It's taken approximately 48 hours to feel this bad, and I can't bear the thought of taking mino again right now. I've been very good (about 95% compliance) about avoiding natural and bright lights.
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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Huey
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Posted: Tue Apr 19th, 2005 19:27 |
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ShrnHml wrote:
Are there any people for whom mino every THREE days is acceptable? It's taken approximately 48 hours to feel this bad, and I can't bear the thought of taking mino again right now. I've been very good (about 95% compliance) about avoiding natural and bright lights.
Sharon
Yes, I had to stretch the mino out to three days on several occasions, and that seemed to do the trick. The mino would degrade out of my system, the herx would fade, and I would go back on the 2 day schedule.Last edited on Tue Apr 19th, 2005 19:29 by Huey
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Huey
1990--sudden onset CFS
Jul 04, d test 25d-29 1,25d-34
Aug 6,04--Started phase 1
Nov 16,04--Started phase 2
Sep 28,05--Started phase 3
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Aussie Barb
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Posted: Tue Apr 19th, 2005 19:55 |
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Sharon
re: "Ugh! It's hit me.....like a ton of bricks. It's not unbearable, but it seems I read some time ago that you should skip the next dose of mino if you feel really bad. I have a dental appt tomorrow, so have to get out."
Your herx may not stop if you skip the mino dose, it may continue as the abx decay..
and if you take your Benicar Q4H pre, during and for 12H following your outing.. and the mino daily to delay the herx till you are over the inevitable light flare, maybe for 2 days.. and then extend your mino dose out to QOD again.. may be best..
see Going out or Travelling?
and, apart from the natural light going to and from the dentist, is the light above to shield your eyes from too..
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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Aussie Barb
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Posted: Tue Apr 19th, 2005 20:06 |
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also, a Note re information from old posts:
MP is a work in progress, so there is information in some of the old posts that may no longer be up to date..
Any of the specific MP Staff Information posts are being continually updated ..
If you have any questions, we are happy to assist in any way we can..
Thank you, 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 Apr 21st, 2005 09:17 |
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Barb......I took your suggestion. Instead of skipping a dose of mino, I took one.
I have had unusual energy today and was able to do desk work, errands, putting up more Redi-Shades, etc. I tried going to sleep at my regular time, but I felt so restless that I just got up and began doing more things....such as getting on the Board. It's 4:00a.m. here, and I'm finally beginning to feel drowsy.
At least I've accomplished all the things that needed to be done today.....and TOMORROW. Now that I know what a Herx is like, I will just plan on doing nothing tomorrow but rest.
It's liberating to know that, if I must, I can delay the feel-bad day just by taking mino on the "off" day.
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: Thu Apr 21st, 2005 23:17 |
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Sharon
seeing as you felt restlessness, from the extra 25mg dose, I am thinking that next time, you may like to try taking a 12.5 mg dose instead.. which should have the intended effect of delaying the herx without the added restless effect..
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: Fri Apr 22nd, 2005 05:58 |
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Barb....does an extra dose of mino usually make people restless? It sure seemed to do that for me. Is it just mino alone that does it, or is it the combination with Benicar? I'm one of those annoying people who always needs to know why?
On another subject, I have become aware of the posts warning against sugar. This will be very hard for me as I LOVE my two small cookies after lunch and after dinner. Plus I drink about a half cup of Coke every day.
These are like special treats that in some small way compensate for all the other deprivations. They are the little twinkles in my fairly dark universe...soothing and comforting. It would be depressing to do without them.
Can one still get well on the MP while eating cookies?
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: Fri Apr 22nd, 2005 06:27 |
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Hi Sharon
re restless: anecdotal evidence seems to suggest that restlessness can be an effect of light, and or of the extra mino..
and as you have asked: sugar: increases inflammation. I dont think anyone has to feel to go without all the pleasures in life, but certainly everything in moderation..
you may find that you can still get the same pleasure from a few sips and or you may eventually learn to like other more natural unprocessed foods / fruits etc as your taste changes on MP..
and dont forget that cookies may (most likely) also contain folic acid in the enriched flour? there may be some *healthy varieties of snacks that others know of.. nuts are a nice alternative..
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: Sat Apr 23rd, 2005 02:07 |
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Barb......
Do you mean that sugar may be a causative factor Th1 disease?
We have a new sugar substitute here called Splenda. Coke is using it in some of their offerings. I was allergic to Nutrasweet and didn't like the taste. However Splenda is made in a form that can actually be a sugar substitute (in equal amounts) in recipes.
I am generally so low on energy that changing my eating habits seems more than I can deal with.
I'm going to try to find a cookie recipe with Splenda.
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: Sat Apr 23rd, 2005 02:34 |
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Hi Sharon
does sugar cause th1? no. As Dr Blaney & Dr Marshall said during the Conference, Borrelia and the other nasty bugs get almost all their energy from Glycolysis.
re splenda..(sucralose).
Dr M makes a chocolate drink using splenda.
says:
"When you drink a lot of hot tea the slenda sure cuts down the calories.
Get the stuff that is designed for cooking - teaspoon for teaspoon like sugar - it is easier to manage. "
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 Apr 24th, 2005 04:38 |
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ONE WEEK FULL PROTOCOL (learned a lot...with Barb's help)
I think I'm going to survive. Herxes no worse than past really bad days.
An interesting location for pain today....lower pelvis where I had all the cysts. IMHO the bugs got their start there.
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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 Apr 25th, 2005 03:35 |
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Sunday night
Barb.....
Is there a best time of day to take mino....especially to get the "first day good/second day bad" timing?
I took 25mg mino last night (planning to have a good day today), and had a pretty bad day instead.
Due to unavoidable scheduling, I have to go out Tue, Wed, and Thu afternoons this week. I'm thinking of either stopping mino 'til Friday or taking 12.5 mg (as you suggested) every night this week.
Dr M. said body size had nothing to do with amount of Benicar, but could it be a factor with mino? I'm 5'2' and 108 lbs.
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 Apr 25th, 2005 03:55 |
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Hi Sharon
each person really has to work out their own meds scheduling to suit.. and of course the circumstances can always change.. and phase 1 is the training ground for phase 2.
re "Due to unavoidable scheduling, I have to go out Tue, Wed, and Thu afternoons this week"
use the instructions given in the post above re going out. and it is best to try to go out in the light as least as possible especially in the early stages.. as there is always some exposure with every foray into the light no matter how hard One tries..
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 1st, 2005 03:44 |
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TWO WEEKS FULL PROTOCOL
Nothing has happened that I didn't expect.......some good days and some bad days. The bad days are mostly debilitating fatigue with a little pain thrown in here and there.
I now know that I CAN do this, and that makes me very happy!
Sharon
P.S. Barb, how do I get to FAQ....Easy finder
Last edited on Sun May 1st, 2005 03:47 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
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Posted: Sun May 1st, 2005 04:06 |
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Hi Sharon
Thanks for posting.
MP FAQs.... Easy Finder..... to keep in your favorites..
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 May 2nd, 2005 02:43 |
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Barb.......so we don't access Easy Finder through the MP website?
What you call "favorites" is probably what my internet provider calls "bookmarks".
Am I on the right track here?
Thanks for all your help........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: Mon May 2nd, 2005 02:52 |
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Hi Sharon
Yes, you can access MP EZY Finder thru the website..
but it is very easy if you have it bookmarked or in favorites to go straight there anytime you have a moment to check thru it..
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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