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Foundation Staff .

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Posted: Mon Sep 6th, 2004 19:32 |
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Barb said, "so while we waited the 50 mins, I placed my black *scarf* completely over my head while we sat there !!! looking like a piece of covered disused furniture!! yes in a waiting room full."
Barb,
You're amazing and you've got me beat. I attended a state fair 2 days ago in 90 degree heat. Out of the thousands of people there, I was the only one covered from heat to toe and darting into each patch of shade I saw. I did have my face uncovered (had applied ketoconazole cream) but I got a few odd looks which didn't bother me a bit. These are costfree, independent measures I can take to ensure that the bacteria killing proceeds. As a result, I suffered only a bit of increased fatigue the next day.
Thanks for being such a good example,
Meg
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GeorgeinRollaMO Member in Phase 3

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Posted: Mon Sep 6th, 2004 21:55 |
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Barb,
As synergism to what Steve (Kemsoup) said a few days ago about putting a 50 mg capsule of mino into 50 ml of water...
A 3 ml syringe, without needle, would be handy to draw up an exact amount of the mixture, then squirt it into the mouth. Only one container would be needed, to which exactly 50 ml of water would be added. Perhaps, a larger syringe of 50 ml, or some multiple of the 50, could be used to put the exact amount of water into the container.
I am aware that syringes are made in 1 ml, 3 ml and 10 ml sizes. Using the 3 ml syringe, you could make 16.667 doses. I would settle for 0.667 mg for spillage loss, etc. Closer specifications than sticking my finger into the powder!
If mino is water soluble! Anyone know?
I believe reading in a post that mino is rather acid and can cause irritation. However, I would think in that small of quantity, following with more water or something like applesauce might wash it down quickly and safely.
I intend to start with the 3 mg dose also, to be on the safe side, then jack it up slowly. This might solve the problem of how to do it.
Thanks to you and Steve for tossing out your ideas that pushed me to thinking of how I could handle the situation. I was wondering!! I gave up finger-sucking some years back. I really wasn't looking forward to taking it up again. 
I am happy for you that things are going smoothly enough.
George
____________________ Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Aussie Barb Member in Phase 3

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Posted: Mon Sep 6th, 2004 23:07 |
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Later Edit: Please Note small doses of antibiotics were not helpful and are no longer used.
awww Thank You for the messages Meg and George a lovely surprise xx mwa mwa 
about dressing appropriately or inappropriately depending from which side it is being looked on 
I am a believer in Educating people. educating about who and how and what and everything!!
whilever we hide our real selves, whether it be the CFS or our dysfunction in any way>>................................................. we are depriving Others; we are depriving the World from learning to accept and understand other
Hiding the truth is holding back Evolution
I figured that they would have it worked out...... that I needed to be shielded from the light..
and they would be learning something about Life, making them more open to new ideas about Sun etc when they heard about it. (they say a picture is worth a thousand words 
Thanks xxx Barb 
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie inactive member
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Posted: Mon Sep 6th, 2004 23:49 |
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Barb,
You have such a GREAT attitude and mindset. I'm really glad you're here, and share your thoughts and ideas so openly and honestly.
You're a wonderful fellow, "itd (in the dark) MP dette"! 
GeorgeinRollaMO says, "If mino is water soluble! Anyone know?"
I heard someone else suggest this, and was wondering if mixing mino with water and storing it would weaken its affects, so I called Walgreen's and spoke to a pharmacist.
He said, you can mix mino in water; be sure to stir well, divide dose immediately, to get the best accuracy. Store the remainder in the fridge and be sure to stir well before each subsequent dose. Discard after 2 weeks.
The pharmacist suggested either a compounding pharmacy or if dividing up powder, it would be helpful to weigh it for accuracy. I think I'm going to do a practice run of dividing mino, before I actually need it.
Last edited on Mon Sep 6th, 2004 23:50 by Reenie
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Aussie Barb Member in Phase 3

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Posted: Tue Sep 7th, 2004 00:10 |
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Thanks Reenie I am so happy to have found such a wonderful Community xxxxx
re the mino;
I contacted my compounding chemist... and it is too expensive to pay for the labour.
I am happy that I did the practice divide..
I've thought about the water thing, and I'm not happy enough with it for me. and I'm not happy with keeping stuff.. ... I know. I'm fussy.. 
Taking off the NoIR & being able to see, the exact amount of "atom bomb" powder / dust, and being able to divide it feels safer to me. I'm not taking my eyes off it !
I won't be taking any chances with amounts. not one bit haphazard. I am considering taking 1.5mg the first time. ........ and yes I know that is even more than licking the tablet ............. and I hate to confess to being such a scaredy cat.. but that's the truth. & how can we all know unless I am a pioneer!!!
whatever I finally decide you will all be the first to know how it goes!!! and it won't be long now........ I have the feeling 
Last edited on Tue Sep 7th, 2004 06:17 by Aussie Barb
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Lilly Guests visiting Phase 1/2/3

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Posted: Tue Sep 7th, 2004 20:47 |
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Barb, I complete agree with you. Being 'out of the closet' is good education for the ignorant as well as for the 'educator'.
I think I'm going to try adding about 6mg minocycline next Monday if all goes well between now & then. You and I have both have CFIDS and are at about the same point in the MP, so I'll be watching you 
Lilly
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Barb said: 'about dressing appropriately or inappropriately depending from which side it is being looked on 
I am a believer in Educating people. educating about who and how and what and everything!!
whilever we hide our real selves, whether it be the CFS or our dysfunction in any way>>................................................. we are depriving Others; we are depriving the World from learning to accept and understand others
Hiding the truth is holding back Evolution.'
____________________ ME/CFIDS Prozac Wellbutrin Trazadone NADH.Noirs avoiding D,sun from07/04;25D=36;Ph2 restart Sep06. Ph3 03/07
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Aussie Barb Member in Phase 3

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Posted: Tue Sep 7th, 2004 21:16 |
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Thanks Lily Out of interest? how did you decide on 6mg mino?
===============================
Day 26 Monday September 6th
Day 7 NoIR < symptoms settled again.
using Q for herx only. gas belly + Probiotics = 
Dizzy 8pm went to bed on 20mg dose B. (usually have 40mg at 9pm)
wakeful thru the night, should have taken another 20mg Benicar dose but too lazy till 3.30am then slept.
Day 27 Tuesday September 7th
the Benicar plan is >> Benicar 20mg Q3h Day; 40mg Q8h Night. = 3 ½ tabs per day: using Q for herx only. gas belly + Probiotics = 
woke with the feeling... YAY I have a brain!! mental clarity. a lightness. (like the pun?) 
have to go the lab to get Ds done again. missed today due to circs
if all stays stable, I feel ready to comm Mino after I've done with that outing. I'm unwell enough to be going anywhere without dealing with a herx at the same time unnecessarily.
then.... this afternoon my Insulin did a number on me.. ..weeeeak ( I have Hyperinsulinemia, Insulin Resistance) 
my nose runs a bit the last few days. in me, .......a sign of *needing something* . hmmm? ponder.. 
slight itchy pinky blotchy rash on inner forearms for half an hour this afternoon
am tired end of day.
no gas belly for days now. taking regular BD probiotics. 
Day 28 Wednessday September 8th
the Benicar plan is changing >> Benicar 20mg Q3h Day; 40mg @ 9pm then 20mg prn ie Q3 - 4 h Night. = 4 tabs per day: using Q for herx only. gas belly + Probiotics = 
sleeping nicely. woke 1.40am. took 20mg Benicar. slept. (methinks wonders if it is the more Benicar my nose is weeping for? I'll watch to see. 
I'm doing Ok. all is well. I'm weaker than before MP as the Benicar does it's work. 
Every time I think that I'm stabilised, that it is coming to time to add the mino, the Benicar finds another corner, digs up some more symptoms for me to stabilise.. That is Ok I'm patient rather than rushing in beyond my body's ability. this has given me plenty of preparation time. plenty of time to listen and learn as well. I'm happy 
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Lilly Guests visiting Phase 1/2/3

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Posted: Tue Sep 7th, 2004 22:34 |
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Re: 6mg mino: I could say I plucked it out of the air, but, really, it is 1/4 of the recommended max. of 25mg, more or less. It seemed conservative but not too cautious. And previous herxing on antibiotics has been mild for me and I haven't had a strong reaction on Benicar...yet . If it goes badly the first time, I'll wait a week and try again with 3mg. I've arranged things so that I can almost totally crash out for a week, if necessary. That's the plan for now....
Barb said: 'Thanks Lilly Out of interest? how did you decide on 6mg mino?'
____________________ ME/CFIDS Prozac Wellbutrin Trazadone NADH.Noirs avoiding D,sun from07/04;25D=36;Ph2 restart Sep06. Ph3 03/07
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Aussie Barb Member in Phase 3

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Posted: Tue Sep 7th, 2004 23:51 |
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Lily 
I'm all for anyone following what they feel. absolutely.
on the other hand I want to make sure that you are making an informed decision... and not taking any unnecessary risks...... especially in view of the fact that you do not have your D levels which can make for a very different story if they are high.
here is a link to check.... if you have not already seen it.. http://www.marshallprotocol.com/forum11/523.html
All Best Wishes Lily, Barb 
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Lilly Guests visiting Phase 1/2/3

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Posted: Wed Sep 8th, 2004 04:22 |
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Hi Barb,
Thank you for your support and concern. That link was very informative. FWIW, I have been staying out of the sun for about 5 weeks, eliminated D-containing foods for about 5 weeks, never took any D-supplements, now have quercetin at hand, I'm taking it easy and have 2 people checking up on me daily re: the MP/my reaction to it and I'm having a very mild response to the Benicar. I'll be the first to admit it if I've been foolhardy, but the only way I know to find out how I'll do on the MP is to do it. I have no known heart, lung, kidney, liver, eye or skin problems. I think my CFIDS affects my brain and endocrine system most severely.
I have been reading, sometimes for 4-5 hours at a time, this site and the other one, for over 5 weeks. At this point, I am ready to act. I believe in Divine Timing and feel it's time. This is not to challenge anyone else's timeline or choices. I'm aware of the risks and willing to take them. I can't say I didn't know - I've read of Jelly's experience and the fellow who captioned his post "BenicaD" (sorry forgot name). I've read every progress report on the site, some more than once. So, I'm proceeding with 'cautious optimism'.
Again, thanks for your concern and information, and best wishes to you, too.
Lilly
____________________ ME/CFIDS Prozac Wellbutrin Trazadone NADH.Noirs avoiding D,sun from07/04;25D=36;Ph2 restart Sep06. Ph3 03/07
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Aussie Barb Member in Phase 3

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Posted: Wed Sep 8th, 2004 04:34 |
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I think I just worked something out!!! 
I asked MySelf, "why am I so Weak now?" 
I had been thinking that this has happened since I'm on the Benicar.. ??? ponder?? 
I can't do *anything extra at home..... and to go out anywhere I am getting to the point of either I can barely manage going to 1 place. or I'm going to have to start going in my wheelchair again. (as I write that another lightbulb goes off !)
I realised that what is happening to me is:
I am so weak..... and I had the Insulin *bash yest...........
because of the readjustment of the hormones as the 1,25D drops (from all ny good work ..................... so is that the good news? or the good news?? lol
and the 2nd lightbulb that then went off was to remind me that it is since I've been on thyroid and progesterone supplementation that I had been able to go without my wheelchair... till now of course as the readjustments are made... sigh....
another instance of more patience required 
it just helps to understand why.. 
____________________ 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: Wed Sep 8th, 2004 04:38 |
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Dear Lilly, I apologise for misspelling your name so many times!!!! 
Thanks for your reply and I am happy that you are happy. I'm all for Divine Right Timing !! 
so Go Girl!!! with very best wishes, Barb 
____________________ 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: Fri Sep 10th, 2004 05:01 |
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Day 29 Sep 9th
I am so very tired. and bored. watching to see what / if anything happening.
Day 30 Friday September 10th
Benicar 20mg Q3 - 4h Day; 40mg @ 9pm then 20mg prn ie Q3 - 4 h Night. = 4 tabs per day:
Q for herx only.
sleeping nicely. woke 2.40am. took 20mg Benicar. slept.
very tired. so extending Benicar out to q4h to see how it feels.
I check Journal. stable except for time adjusting to NoIR glasses.
am on the edge of Depression all the time. tried the NPS.
so sticking to my bed, being quiet to keep it suppressed. 
MINO Comm: 50mg tablet > divide in 4 = 12.5mg > crush & divide in 4 = 3+mg > divide in 2 = 1.5mg Friday 10am. (squashed onto the end of a banana)
next mino due to look at Sunday morning.... depending on how going?? maybe 3mg? 
feel *good heavy aura* in sinus & upper teeth, slight itching face, scalp.
moving to Benicar + ABx Board 
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie inactive member
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Posted: Fri Sep 10th, 2004 06:33 |
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Hi Barb,
What is your plan for mino? Are you going to move your dose up if no herx at 1.5mg? Are you going to start posting in the Full MP? I was shocked when I read you started since I thought this was still Benicar only string. 
Glad you started!!! I'll be hoping "we" do fine! 
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Lilly Guests visiting Phase 1/2/3

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Posted: Fri Sep 10th, 2004 16:35 |
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Barb, congratulations! on moving on.....to Mino and the other board. I hope you are feeling OK right now, just a little herxing .
I hope to be the same next Monday. Best of luck!
Lilly
____________________ ME/CFIDS Prozac Wellbutrin Trazadone NADH.Noirs avoiding D,sun from07/04;25D=36;Ph2 restart Sep06. Ph3 03/07
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Aussie Barb Member in Phase 3

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Posted: Mon Sep 27th, 2004 10:51 |
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Aussie Barb @ new site Benicar + ABx >>
http://www.marshallprotocol.com/forum20/682.html
____________________ 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: Mon Oct 11th, 2004 05:55 |
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I'm Back!!!! from here !! I've been away at the Benicar & Antibiotics Board for 32 days!! Monday October 11th 2.55pm ish
Benicar: see below .... Probiotics BD
It is 8 days since I last took my 3rd dose of 12.5mg mino. and since I had NoIRs to wear..they broke... am waiting for them in the mail 
This is a most Interesting & Intriguing Journey I am continuing to herx on Benicar Only.... and I'm waiting for my replacement NoIRs to come...
and as I have no idea how long this will continue... well, as always..... everything is 1 day at a time.......... I am returning here to the Benicar Only Reports
I am taking my Benicar 20mg q2h to q3h prn / day & 40mg @ bedtime and woke last night for another 40mg in 5 hrs.
Symptoms are a twitch in leg muscle; antbite feeling on neck; and on ribs up to underarm. wet ears. throat fullness heat. + diaphragmic inflammation... less today .. less (but still) fatigued today. NPOS relieves IBS paralysis.. 
AUSSIE BARB EDIT: These Mino doses are no longer used as starting mino doses.. as they were found to be detrimental to MP progress.. which you will plainly see if you continue to read this thread..
Please see PHASE ONE MARSHALL PROTOCOL How to start the Marshall Protocol for up to date mino dosing.. beginning on Mino 25mg.. thank you...Last edited on Tue Apr 19th, 2005 21:25 by Aussie Barb
____________________ 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: Mon Oct 11th, 2004 20:43 |
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Tuesday October 12th 5.45am ish
Benicar: Q2 to 3h day & q5h night is prn. .... Probiotics BD
Slept well. the need for B wakes me. I take it & back to sleep.
I woke & feel like my Benicar blockade is in place. I have been putting it in brick by brick for a long time.
Symptoms: itchy face nose palate scalp. still some inflammatory @ right side abdo. some mild burning in upper back shoulder area. and ribs.
____________________ 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: Mon Oct 11th, 2004 20:59 |
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Tuesday October 12th
Have been cutting D exposure: 3 months
Taking Benicar: 2 months
Days mino: begin 1.5mg ^ 12.5mg : 24 days (12 doses) see @ Aussie Barb Page: 1 2 3
Days since last mino dose: 9 days
and days since broken NoIRs: 9 days
AUSSIE BARB EDIT: These Mino doses are no longer used as starting mino doses.. as they were found to be detrimental to MP progress.. which you will plainly see if you continue to read this thread..
Please see PHASE ONE MARSHALL PROTOCOL How to start the Marshall Protocol for up to date mino dosing.. beginning on Mino 25mg.. thank you...
Last edited on Tue Apr 19th, 2005 21:24 by Aussie Barb
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie inactive member
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Posted: Mon Oct 11th, 2004 21:08 |
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Aussie Barb says, "I am taking my Benicar 20mg q2h to q3h prn / day & 40mg @ bedtime and woke last night for another 40mg in 5 hrs."
I'm not exactly sure why you've upped your Benicar so much, but you appear to possibly be "taking more than you need," as Dr M says, at this point, if you're herxing now on Benicar alone.
I'm sure you read the posts where I increased daytime B to q4h, kept nightime dose at q6h and herxed on B. Meg has raised her dosing to this formula, to increase bug killing, but this is after her long time on the MP, with limited sx.
Why not try going back to the equivalent of q6h or q8h and see if the herxing wanes, so you can add mino again? You can always go back to this dosing later on, like Meg. 
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