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Reenie
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Posted: Sun Aug 29th, 2004 01:59 |
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Barb,
Thanks for posting all of the mino reminders! It's a good idea to have a "request for clearance" in place, from DH before advancing to the next dose, especially since your reaction will affect him too! 
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Aussie Barb
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Posted: Sun Aug 29th, 2004 07:48 |
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thanks  Reenie  x
Thoughts Today:
As I am going thru this; it takes me back in stages to how I was 5 years ago etcc; and I am managing it ok.
I just have to remember to remind myself  that any anguish is herx; that it is not in fact *real*..... that it never was in fact.
I realise from all this that what I've been going thru all this time past has definitely been a very *sick* me. 
I am beginning to see how it goes worse and not so;
and it's good for me to have this contact with like minded people who are warm and kind x thank you
it is however, scary to think what I have to go thru yet.. .... but the Important Bit IS: I know I can do it cos look at all the s... I've come thru so far without this knowledge and without this much hope on the horizon.
with thanks, Barb x
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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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kemsoup
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Posted: Mon Aug 30th, 2004 09:54 |
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Later Edit: Please Note small doses of antibiotics were not helpful and are no longer used.
Aussie Barb says, "Because I'm getting close to beginning the minomycin. and I have 50mg tablets, so tiny......
and I plan to start by taking 3mg!!"
Barb,
This is a suggestion and I don't know if it will work or not as it depends on whether your Minocyline is water soluble or not. If it dissolves in water Ok, then a good way to get a 3 mg dose would be to dissolve a 50 mg tablet in 50 ml of water and then ingest 3 ml of that solution. One can increase or adjust dose easily by just swallowing the correct number of milliliters of solution. I've done this in past and it works well--as long as material dissolves in water. The only difficult part may be obtaining a milliliter graduated cylinder or container. They can be ordered I'm sure, but will have to check source.
I'm glad you are keepin' on. We will be tracking how you are doing.
Best Wishes,
Steve 
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Aussie Barb
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Posted: Mon Aug 30th, 2004 21:17 |
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Thanks Steve I automatically imagined the tablet would not be fully soluble. but I can look into that thank you. I was thinking more of the apple sauce for that reason. and I also contacted a Compounding Chemist, - but labor costs are prohibitive. so I will be the chemist
Day 20 Tuesday
I'm having small bits of feeling so good !! (NB all is relative.. good for me is not good for anyone wanting a life.. it is just 'feeling' 'good'... ie mental clarity.. for a nice change)
and then>>>
I'm suffering bits of payback
I'm quite surprised about it.... but there it is. it will be from my giving more of myself than I should, than I actually can..
... & with my daughter being so ill and distressed. I handle it well and calmly, but it obviously takes it's toll.
other symptoms are less noticable. muscle soreness stiffness. and I'm mindful of looking out for any thyroid symptoms. so far they seem a long way off.. but ? 
I am learning a lot all round, so I'm doing well.
My body is working at max capacity, - just me & the Benicar
without doing one other thing.
One other thing is enough to throw the balance.
It is highly interesting for me to be observing this well oiled balancing act.
I'm being taken back in understandings > lights going on! and so forward to the brighter future at the same time.
I do have bowel function restored (big headline here!!)  The MP mix> Probiotics + cutting D + Benicar are the key.
so in between the bits of herx or payback > mental anguish I'm a very happy girl
& MP's bringing these Good ppl into my life is another wonderful bonus.
Last edited on Mon Aug 30th, 2004 21:38 by Aussie 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: Mon Aug 30th, 2004 22:07 |
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The MP Blessing
To us Each & All:
May your herxes be big enough;
for you to be making good progress;
and not too big;
that you may still be able to rise to the challenge!!!
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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Reenie
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Posted: Mon Aug 30th, 2004 22:25 |
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Awww, thanks Barb, and right back atcha!
Hey, I've just asked Dr M about the Q and herxing on the Quercetin string. Dr M and Scott are "thinking" that we can still progress and kill bugs with Q, so... I'm thinking, THAT would be the way to go, don't you agree?
http://www.marshallprotocol.com/forum27/407-3.html
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Aussie Barb
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Posted: Tue Aug 31st, 2004 01:21 |
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Thanks Reenie
============
News Flash: My NoIR glasses have arrived in the mail!
I ordered them on the 11th and they were invoiced 18th and arrived to me Australia 31st.... sigh.....
I put the indoors #901 on and I felt immediately a quick physical stab of *sick* in my stomach... ugh... and gone..
and the Bat Cave is DARK!!!
so no doubt they are going to make a difference...
and also, now, I will feel I have permission to leave the Cave; suitably attired of course wearing my Cape
I will now see what, if anything, changes in the next couple of days......
and then I may take the Minocycline charge. da ta daaa.....
I experienced a change when I cut the light. ie when I turned the unit into the Bat Cave (yes BatMan is here
first I was worse ; and then improved.
They certainly cut the light differently altogether to any sunglasses.
I want to see if there are any more changes with the change to NoIR now.
and I don't want to be mixing that up with a change to taking the Minomycin at the same time in case it exacerbates the herx.
I want to do everything that I can, that I know to, to optomise my experience of this.Last edited on Tue Aug 31st, 2004 09:20 by Aussie 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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Bundy Dale
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Posted: Tue Aug 31st, 2004 03:50 |
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Barb
Your reports are an example to others,the way you have tried to strictly follow all aspects of the MP really helps people like me learn about the process.
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Aussie Barb
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Posted: Tue Aug 31st, 2004 21:35 |
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Day 21 Wednesday
Cont:> Benicar 20mg Q3h Day; 40mg Q8h Night. = 3 ½ tabs per day: using Q for herx only. + NB. Probiotics
Thanks Bundy Dale
I'm wanting to do MP to the best of my ability; for Self Preservation..... yes!
and to be able to present a viable alternative to my 23 year old daughter with CFS.
All of her Life, she has seen me suffer; and she has seen me try and be hopeful too often.
NoIR glasses: >> day 1. At times, I'm a bit woozy dizzy with moving around. no doubt I'll adjust. ( # 901 + # 907 Fit-Over w/Side Shields http://www.noir-medical.com/noir_amber.htm > cost delivered Australia $ A 116.
I went out to the shop this afternoon with MDH. The effort makes me slightly nauseous, as it did the other day too. but I'm managing fine living quietly at home doing nothing.
muscle soreness, stiffness, & head, gland, throat involvement are still present but minimal. mental anguish nil today.
Usual Brainfogginess means I still cannot apply myself to finer things, such as reading, sewing. but I can now clean my teeth with less effort Last edited on Tue Aug 31st, 2004 22:45 by Aussie 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: Thu Sep 2nd, 2004 09:12 |
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Day 22 Thursday 6pm
Cont:> Benicar 20mg Q3h Day; 40mg Q8h Night. = 3 ½ tabs per day: using Q for herx only. + Probiotics absolutely essential for me.
3 days wearing the NoIRs symptoms that are different>>> some dizziness. very slight. tiny spots of anxiety / fragility too. my symptoms have increased subtly. I feel cardiacal / chest pressure (is entirely bearable) if I was to do anything active, even walking around the Unit. I have to take care. no missed beats. not worth taking the Q. I just go quietly
~ makes me wonder if my D tests were frozen??? and could have been a lot higher in reality.
I wasn't convinced by the Lab's response to me I will ask the Dr to write it on the request form this time.
my Dr appoint Friday(24 hrs) re next blood tests Monday. then begin Mino.
I rather be cautious than suffering too much herx unnecessarily. I want to be safe. and for my daughter too. she is very very ill.
~ muscle soreness, stiffness, & head, gland, throat involvement are still present but minimal.
otherwise I'm doing fine and I'm a very happy Member of My New Community Last edited on Thu Sep 2nd, 2004 10:48 by Aussie 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: Fri Sep 3rd, 2004 10:47 |
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Day 23 Friday 7.50 pm
Cont:> Benicar 20mg Q3h Day; 40mg Q8h Night. = 3 ½ tabs per day: using Q for herx only. gas belly + Probiotics =
4 days wearing the NoIR glasses: they have taken the herx back up some. is still managable.
*Body loaded* feeling. body is working hard yet. It feels inflammatory. I cannot be active. walking around I experience body pressure. so going slowly
emotional fragility if *pushed* to do anything
Postponed the Dr appointment till next week (couldn't manage it)
My legs are itching tonight !! will it last?
aching upper back all day.
gut pressure tonight
Had lemon *drink* tonight.
no dizziness or anxiety today.
I need to be stable on the Benicar first before moving on to Mino.
I sleep soundly at night with 1 or 2 momentary wakes.
1 nap during the day. can do computer.
Best Wishes to All, & Thank You All 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: Fri Sep 3rd, 2004 17:06 |
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Day 24 Saturday 2 am.
I took Benicar 40mg 9pm. +quercetin going to bed 10pm for chest pressure getting over the top. slept.
I'm up at this hour...I'm up with  herx . 1.30am took 20mg Benicar. it is 4+ hours after 40mg dose. I want to explore the B action rather than take Q. my abdomen feels ready to explode. not pain. but pressure. and still managable, but quite feeling like I've had the wind punched out of me.
the NoIR glasses have made a big difference: upping the anti. lucky they weren't here earlier. I have needed to do this increments. I can feel there's a lot of potential trouble in there. this is obviously why I was having a la la ride on the Benicar up till now. even though I have been seriously living in the dark!!!!!!!! omggg I'm surer than ever that my 1,25D is higher than said.
I'm happy to be doing this, and so happy that I can trust myself to go steady so far. Phew!!!
after half an hour, I think I can say there is relief, and I can go back to bed and should settle. The extra Benicar has helped.
How exciting is this!!!!!
PS 5am usual wakeup time. chest pressure, going to abdo pressure, is back again.
took 20mg Benicar (3 ½ hrs since last dose) aahhhhh relief ...... this is good.
Thanks Reenie I'm no scientist and so all I think I know is that by lowering the D levels it allows my Immune System to do some work.
I do know that my body is feeling *loaded*. ie working. more again since wearing the NoIR glasses 4 days.
I confess that I do not know or care if it is technically herx or lowering D.............
I know that whatever is happening means something is happening and that I don't plan to proceed further till this sorts out.
Best wishes, Barb happy cos more Benicar is better.
Last edited on Fri Sep 3rd, 2004 21:41 by Aussie 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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Reenie
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Posted: Fri Sep 3rd, 2004 21:06 |
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"I'm up at this hour...I'm up with herx."
Barb,
Would you please describe what you're thinking is herx sx? I'm wondering if you're just having a reaction to lowering your D levels more, like I did when I took Q... just a thought here and a chance to compare notes. TIA!
Thanks for answering via, edit above.
"I confess that I do not know or care if it is technically herx or lowering D............. "
Barb,
IMO, we NEED to "know and/or care" since how to handle it will vary a little, anyway. I know that Dr M says that Phase 1 of the MP is mainly "training" for US. We need to learn how the meds cause our bodies to react and what to do about it.
I don't mean to sound like I'm nitpicking here, but... I think it's important. If you're reacting poorly to the Q, then you would not be ready to take it, like me, but as Dr M says, it's good to know it does something.
And... if you are feeling badly from lowering D, as opposed to herx, I would want to know that, so when I do start herxing, I know how I want to handle it. So, with that said, I'll apologize for picking nits... Last edited on Fri Sep 3rd, 2004 22:15 by Reenie
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Aussie Barb
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Posted: Fri Sep 3rd, 2004 22:43 |
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Dear Reenie,
Thank you so much for taking an interest, and yes it is the way we all learn. However it is NOT my nature to be into these technicalities in the same way that you are proposing. it is not me.
My PM answer to you about how I Know it was not the Q that caused the pressure.
is that that is the One Dose of Q I have taken in over a week, and I took it because the pressure had already come to being unbearable.... and I had taken 40mg B....... and I experienced relief. and slept.
I woke with the pressure back 1.30am and I needed relief so I took the Benicar not the Q because it was time that I could take the Benicar 4+ hrs and I experienced relief and was able to go to sleep.
I now have my timer set for 20mg x 3hr Benicar as usual But I will be monitoring how I feel and will adjust accordingly to more if I need to.
Reenie, I confess to doing things from an intuit perspective so I may not be able to explain it logically. keep asking if I'm not yet making myself clear. xx 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: Sat Sep 4th, 2004 21:53 |
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Day 25 Sunday September 5th 7am
7 weeks cutting D exposure
Day 6 NoIR
INCR: Benicar 20mg Q3h Day; 40mg Q6h Night. = 4 tabs per day: using Q for herx only. gas belly + Probiotics =
Yesterday: we went out for fuel. I felt able to drive my car in the quiet Saturday afternoon for fuel. so while we were out I decided we could go and meet Bundy Dale. very nice to meet BD in Person.
very small outing, whew.... felt sick. I actually cannot do anything much, even at home, and to go out to 1 shop is more than enough to make me sick. cos *body loaded* since the benicar is working on me.
upper back ache most of the time.
then the buildup abdo wise.. liver area mostly down *R* side (always been where Sx are) >>> relieved by Benicar dose.
sore muscles stiffness
legs, drawing sensation to hips / knees when lying down.
hands go to sleep when I do .
lower leg itch ok unless touched
back to less energy
but all is managable. I am quite Ok as long as I go steadily, and take my meds, & etcccc
hair is softer and scalp not itchy dry & flaky
sleep soundly. wakeful 1.30 am ish now so having another 20mg Benicar
5 am Bad *R* leg cramp  now leg very sore to walk on. do Not want Any more of these (((kemsoup))) (note: I may have forgotten to take my Thyroid med yest
(later note: muscle knot >good relief after Benicar)
lemon drink taken Friday night doesn't seem to have any immediate effect on me at all that I know of. it hasn't helped any herx or pressure symptoms so far.
since wearing the NoIR glasses (5 days now) the Sx have stepped up more so I'm not moving on , cos I can feel the pressure in my chest and abdo and I do not need it any higher velocity I can tell you.
Having done the practice run preparation re Abx 1 week ago I'm so pleased I did...
to see that tiny amount that can have such punch & to read the experiences of others has given me time to learn respect for / comprehension of, it's power; esp while I feel this high level of inflammation within me. I am being cautious.
not starting the minocycline yet till all settles down, till I'm well stabilised.( will comm @ less than 3 mg)
Re Dress: thanks Trevor ! a tracksuit is too hot for sunny Australia & me, but yes I am well covered, & mostly am not well enough to drive yet, or to go out much; and I prefer to stay home at this point, for all these reasons..
for those interested, I always wear long dresses (I always have liked them) and I have my lovely Black Cape that I made, and I have a *scarf* of the same material, and NoIRs & gloves.
and I am really happy with that...... & I'm not worried what anyone *else thinks. & to add to that My Dr is very encouraging too. I'm a Happy MP girl.
Thanks
Last edited on Sun Sep 5th, 2004 04:39 by Aussie 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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Dr Trevor Marshall
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Posted: Sat Sep 4th, 2004 22:44 |
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Barb,
When driving during daylight wear gloves, and a dark track suit. A balaklava is also useful, but tends to create panic in passing motorists -LOL
..Trevor..
ps: an alternative strategy is to shield the side of your face by raising the hood of your tracksuit
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Bundy Dale
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Posted: Sun Sep 5th, 2004 04:04 |
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Barb thanks for dropping by,it was nice to meet you and your hubby.
* Barb was very well covered,the black cape,Noir glasses and long dress left very little skin exposed,add to that it was an overcast day.
Very interesting that with all the protection Barb had she still had a reaction to the outing,it just goes to show how it may only take a little exposure to have an affect while on the protocol,i hope everyone is aware of this.
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Reenie
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Posted: Sun Sep 5th, 2004 04:17 |
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"...i hope everyone is aware of this."
Ah, yes, Dale,
We are ALL learning about this rather quickly!
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Aussie Barb
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Posted: Sun Sep 5th, 2004 21:31 |
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Day 25 Sunday September 5th
7 weeks cutting D exposure
tooth *L* upper, sl on edge again
liver area pressure> probiotics gave relief
sore muscles stiffness all the same, only really noticable on movement.
some backache
low energy, tired
brainfog since Benicar.
leg ok after cramp.
couple of bouts of being chilly; hot to touch.
evening.... things may be settling again now?
Day 26 Monday September 6th 6.30am
Day 7 NoIR < after initial working up to exacerbation, symptoms settling again
Decreased again> Benicar 20mg Q3h Day; 40mg Q8h Night. = 3 ½ tabs per day: using Q for herx only. gas belly + Probiotics =
slept soundly. one period of tossing.
I woke feeling a sense of relief / improvement. & more mental clarity. I'm thru the worst of the exacerbation of wearing the NoIR glasses. YAY!!
now to move to the settling on the benicar and then it'll be *fasten the seatbelts* to mino....
Dr appointment due this afternoon. planning to request check the thyroid & the D levels redone before moving to mino.
and asking Dr to write 1,25D freezing request on the Blood Test request Form.
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Aussie Barb
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Posted: Mon Sep 6th, 2004 10:30 |
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Day 26 Monday September 6th 7.30 pm ish
Day 7 NoIR < symptoms settled again. back to chilly feet today. back to being able / interested to *do* a bit*.
Benicar 20mg Q3h Day; 40mg Q8h Night. = 4 tabs today: using Q for herx only. gas belly + Probiotics =
IM Methyl Cobalamin B12 I had planned to not have any more of my monthly IM B12 because of doing the MP. it was 2 months since I'd had it last.
and I'm early into the MP yet. Due to some of my old symptoms that I ID as my B12 sx presenting subtly: fragility, sluggishness, wanting needing to lie down waiting at the Drs eg., and then feeling sick from any very small outing (all covered), & more particularly pressure in bottom and unable to go (despite probiotics) + more personal symptoms., I decided that I would have the B12 while I was at the Dr anyway..... and observe my symptoms to see re effect / improvement. Dr agreed. I'm aware that the sx could be seen as herxing or light effects ..... but that was my need / choice / decision / experiment... today.
BP Monitor: I took the unused BP Monitor back and received a full refund this afternoon. My BP at Dr was 129/62 !!
Dr visit: got me covered: I wore my long dress, Black Cape, and NoIR glasses, and we had to wait for 50 minutes to see the Dr.
I'm always so amazed how much light there is everywhere we go!!! inside or outside: so I thought, well, it matters less what ppl think of me than what is going to happen to me....... 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.
Benicar: extra: I took my usual 3 hourly 20mg dose just before I went out to the Dr.
and I took another 20mg when I came home 1+ hour later. and I set my timer for the usual 3 hours for the next dose. thanks TM for the hint Last edited on Mon Sep 6th, 2004 11:02 by Aussie 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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