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Aussie Barb
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Posted: Mon Nov 29th, 2004 17:35 |
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Tuesday November 30th 7.30am ish is Day 6 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
At first I was impatient to be *normal*, to be doing MP normally ... but I am happy now to *go with the flow* and to trust that my body is doing what it needs to do, and is taking me where I need to go..
Benicar: 40mg Q4h day & night:
mino 25mg daily: continuing.
awake thru the night every night now. last night had a strong decaf coffee to try to help the detoxing, (in lieu of the coffee enemas I have heard about  and I did go to sleep.
I have been constantly feeling soo *sick*. any action, even small, makes me feel sick. I can only stand to eat light foods.
The diaphragmic across front ribs inflammation has been like a hotplate.. & bars of aching at neck, hips, knees, ankles thru the night.
By keeping the Benicar at Q4H and resting resting I manage and have no depression. go over the 4hrs and I am miserable in every way.
I think my bacteria killing and my body's ability to efficiently detox are not yet in sync. this too takes time.. eeep  it is all happening, and I am managing, so all is well...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Nov 30th, 2004 11:26 |
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continuing ...Tuesday November 30th Day 6 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
so many variables: we have darkened the full house even further. by placing a dark colored bed sheet over each lot of drapes. shrug. so that I can barely see, without NoIRs, without a light even during the day.
a *different* day. didn't feel like other days of herx, but very weak in every way. flat out having strength to get around. still not eating *normally*... when I'm not able to *eat* it is a change. there has never been any time I have been like this. it doesn't worry me.. I'm able to eat *enough.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Nov 30th, 2004 11:42 |
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Wednesday December 1st 1.45am ish is Day 7 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
change to Benicar: 40mg Q4h day: back to 20mg doses Q3H.
I have been taking the Benicar @ 40mg dose x almost 3 weeks since the change of mino schedule. if I keep taking 40mg x Q4H I am going to need a sponsor. so I have gone back to 20mg doses to see how many hours I will get from that, to see if that strings it out any further.
I am awake for my usual recent midnightish wakefullness. how am I? I feel somewhat rejuvenated (even) from where I have been, but not fully. I start thinking maybe I can extend the mino dosing? but I had better not be in a rush to add any more changes.
My stomach is a bit so so.. and the gut inflammation is *quieter than it is normally but still well present. have had the aching hips when in bed. itchy bumps still on right shin. still sweet body odor of nitrous oxide.
time to go back to bed.. =)
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Nov 30th, 2004 21:29 |
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Wednesday December 1st continued ..
sick day again or still. so accordingly I must be doing Ok. I'm telling MySelf that all is well, that I am killing bugs .. I am managing....
greetings & best to all, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Big John
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Posted: Tue Nov 30th, 2004 23:12 |
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Hope you are feeling better soon! 
Last edited on Tue Nov 30th, 2004 23:12 by Big John
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Aussie Barb
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Posted: Wed Dec 1st, 2004 16:20 |
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Wednesday December 1st continued ..
I went to the Dr.. which is less than 2 minutes from home. Hadn't been for approx 6 weeks. I wore my Black Cape up over my head and looking thru the neckhole. long dress and NoIRs.
The receptionist asked my husband... does she have a migraine? and when he told her I was avoiding the light she gave me a darkened room and a bed(!) for the hour wait to see the Dr. so that went well.
Thursday December 2nd 6.20am ish is Day 8 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 20mg Q3H.
Changing the Benicar back to 20mg doses has helped to take the pressure off. and I can easily go the 3 hrs.
I am still sick. not able to eat much.. but that is ok.. I will not suffer there.
sweet body odor still.. I am wanting to be able to extend the mino dosing but with symptoms as they are will wait yet.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Dec 2nd, 2004 20:31 |
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Friday December 3rd 10.30am ish is Day 9 of mino @ 25mg daily & extending as able schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 20mg Q3H. Quercetin BD
The new old Benicar dosing is the way for me to go. the itchy bumps on my shin are disappearing. The pressure is lifted off me. I am still weak, sick, but relieved.
I have inadvertantly extended the mino dosing by 2 hrs yesterday ie to 26hrs, so will see how I go extending it by 2 hrs at a time.
I am at the same time now as yesterday ie. 26 hrs, and am beginning to itch a little full body. so I will take the mino now.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sat Dec 4th, 2004 05:41 |
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Saturday December 4th 7.30pm ish is Day 10 of mino @ 25mg daily & extending as able (today to 31 hrs) schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 20mg Q3H & as wakes thru night. Quercetin BD
I am sleeping better again. I automatically wake for Beni (no alarm) and straight back to sleep.
Still sick this morning.. was it the quercetin? but fragility faded today. a phonecall is enough exertion to put me back again. so I take care of me. I was able to wash dishes tonight!
I feel to have turned a corner this afternoon as far as not hanging onto the mino by a thread. I am extending the mino dosing a couple of hours each day and I have been able to extend it to 31 hrs today before I started to feel a difference.. this is a relief to have picked up a little.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Reenie
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Posted: Sat Dec 4th, 2004 20:04 |
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DaveW
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Posted: Sun Dec 5th, 2004 02:05 |
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Hi Barb,
Congrats! Sounds like you've finally got your foot in the door, and making progress!
For my first few weeks on the MP, I could take mino no more than once every five days. Now, I am beginning to be able to reduce the time between doses.
Try to remember that once you start taking the mino regularly - progress is inevitable. And try to remember, that we are all in the gallery cheering for you.
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
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Posted: Sun Dec 5th, 2004 02:18 |
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Sunday December 5th 4.30pm ish is Day 11 of mino @ 25mg daily & extending as able (so far to 31 hrs) schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 20mg Q3H & as wakes thru night. Quercetin BD
thanks Guys.. I have had another rough day today... but yesterday afternoon's window was a good experience at least.. and as we know, feeling bad is good, and to be expected!! The good news of others before us keeps me going..
I have had chest heaviness and anxiety and general unwellness. but I rest / sleep and take care.
thanks to all & best to us all, Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Dec 6th, 2004 21:15 |
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Tuesday December 7th 11.15 am ish is Day 13 of mino @ 25mg daily changed back to daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 20mg Q3H & as wakes thru night. Quercetin BD
CHANGE: I have finally snapped out of the perpetual herx that I have been in all this time. caused by taking the small mino doses to start.
The relief from living in that intensity is wonderful.
BUT: now I can assess MySelf on another level and I am physically & emotionally weakened, fragile. this has been so for a couple of weeks, but I wasn't able to differentiate with the herx present.. thinking it had to do with the herx.
I have tried all the meds combos and cannot be upheld. I spoke to Meg & Dr M. I have been holding off the NPS and the B12 while doing MP: history> which were both Rx for me along with thyroxine, and which all enabled me to come off 3 years max dose prozac in 2 months only 1 year ago.
The NPS can now haul me back temporarily only and not fully.. I am settled to what I was, but of course am terribly sick and weak.. but at least not depressed / crying as I have been .. I rest sleep as much as I need to.. it helps to keep me from feeling the fragility..
PLAN: Having achieved the status of non herx! I am going to rest here in this for awhile before moving to extending the dosing.. that means Q24H mino dosing till I decide I can move on again..
I have asked for a home Dr visit to have my IM Methyl Cobalamin B12, which I had withheld for 3 months re the MP...
and I have asked for a home visit to do my labs, as I am too weak to go out.
all pending.. Thanks to all support received. xox
warning: best not to start MP at small mino doses.
At the time I was beginning MP I / we had seen the bad 'herxing' of some on 12.5mg and less, and because I knew MySelf to be med sensitive, chose to begin on a really small dose. What none of us realised at the time that those *herxes* were not herxes, they were from sun / light exposure.
and we have found that beginning on small dose mino is not a good thing to do.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Dec 7th, 2004 04:09 |
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continuing ... Tuesday December 7th 6.15 pm ish
My dear Dr has been to visit and gave me my IM Vit B12.
He asks, "what has happened?" that I do not look happy like I used to... that this treatment is "not doing you any good."
I said I would not be swayed and that it will take time and we have agreed that I must continue to have the B12 and NPS.
and he will come anytime I need him to.. I am hoping / feeling fairly sure that I am on the way up now... 
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Dec 7th, 2004 13:01 |
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Wednesday December 8th begun 2 am ish is Day 14 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
change to Benicar: 20mg Q2H & as wakes thru night. Quercetin BD
Well, I have woken @ 2 am and I think I have had a lightbulb moment.
The IM B12 did take that edge off my suffering and gave me welcome relief. having had the Benicar at 1 am, I woke @ 2am feeling the *edge..... hmmmmm ...... alert! thinking that this is a new type of herx is a possibility. >> took another 20mg Benicar. relief.
How will I know? I will take the Benicar 20 mg Q2h to hold me together, and keep the mino 25mg daily, no extending mino for now. and see how I go. This has been really tough. I could not have hung together without the wonderful support I have.
Some Thoughts: I am so isolated by the consequence of staying in the dark and of my being so weak that I can hardly communicate with anyone except to the minimum with closest Family. this is valuable time out of my older Parents lives; where I am not able to visit or be present to them in the way I would like (mind you they have been fitter than I for many years now). My daughter has just had her 30th Birthday and I am too incapacitated to throw her a party or even go to her, or to go to any of my 5 adult Children. and there are so many things that are *out there* and even in here ....... (I couldn't do any of those things pre MP anyway... I can't read or watch much television.... I haven't been capable of *doing* Christmas for many years... but yes I am going thru worse as warned)
BUT: this is a choice for me, that if I wait for all those things..... when will it ever be time for me? It is my choice to choose to do something about My Life.... to take this time with the at the moment, to me, incomprehensible goal; ........ or to be sentenced to a full Life of sickness.
so yes I am thinking of Dr Marshall & Meg & Belinda & Betty & their friends who now have a surreal Life they can live... I cannot comprehend that I may ever truly have this too.... but I am compelled to keep trying for it..
My Dr thinks this is not working..... naturally they want to see someone *getting better* asap ..... I think it is working very well by the look of things..... ahhh sighh on we go with all my MP friends..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Dec 7th, 2004 21:02 |
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Wednesday December 8th continued.. some extra things to list. as I said, not a pretty sight...
Sweet body odor is still much with me: well, Dr M said it could be NO from the BUN.
Others describe their odor as burning plastic / rubber. @ Nitric Oxide?
Once I'd have thought of it as ketosis. I don't know what it is. it could be like any of the above... how confused am I that I don't know I am to have a blood test for Rickettsia when the Lab gets it sorted.. maybe the critters are in ketosis???
I have said before that Pre MP I used to sleep myself into a *state*.
I am doing that again... waking up from a nap in a fragile state... Pre MP I took charcoal to hold me... now I am taking Benicar.
My face and mouth are itchy > tending toward sneezy...
At the base, basically I am far better today from the B12, but I can find myself to be only an inch away from no good... am hanging on thru the Benicar and mino ... which must mean it is still herx, just tuned to a new Channel.. sighhhhh ....
I think I will be able to actually do something today, and I have my active sense of humor back.. that is always a help..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Tami
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Posted: Tue Dec 7th, 2004 22:07 |
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Dear Barb, You're so good to share what's going on when you're feeling like you do. Thanks for reminding me "feeling bad is good." And for your example of walking through it. Great knowing we're walking toward health, even when we're climbing the mountain. Take it Easy, Tami
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FMS CMP CFS MCS Dementia TBI OA RSD MI MVPS C.Pneum thyroidectomy Pos ANA ParvoVirus| Avoid D/light NoIRs| Lexapro Trazadone Synthroid Aspirin other meds on file| Ben Q8H Minocin 25mg every other day
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Aussie Barb
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Posted: Tue Dec 7th, 2004 22:36 |
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Thanks Tami, it feels a bit embarrassing to be having such a rough time... & to be working it all out in the public eye so to speak... but heyyy... this is real... this is Life ... it is messy sometimes ... and we all feel a bit better if we see someone else 'fess up...
My thought process has further evolved after saying: so I have decided too to let my Parents and extended Family officially know that I will not be leaving the cave any time soon, so that they are (left unsaid: but as able bodied Citizens) they are officially invited to visit me / us anytime they wish. ...... all is out in the open and understood then..
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Dec 9th, 2004 05:36 |
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Thursday December 9th 7.35pm ish is Day 15 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 20mg Q2H to 2 ½ & as wakes thru night. Quercetin BD
The IM B12 seems to have given me a little more strength and my sense of humor back, but the herx is pushing me to the limits esp in the mornings with fragility and anxiety, very sick. I keep the Benicar @ 20mg x Q2h and cling to my bed to survive it and take the Quercetin BD < helps keep plumbing ok as well.
I can just stretch the Benicar to 2 ½ hrs in the afternoons.
other things of influence: this time last year I had salivary hormone tests done.
Interestingly to me, my hormone levels when tested then, showed high levels of the agressive *hold me up / survival hormones*..... cortisol, estrogen, testosterone, & insulin, ..... and almost nil of progesterone.....
I have noticed that since MP that these hormones have lowered. the lowering process would surely be having it's effect too, just as surely as if I was weaning them, & could be influencing this rough time. and I can manage without NPS, particularly with the B12 & while I can control everything with Benicar and Mino dosings.
My body has a history of strength, Self Preservation....... ie. I had my tonsils out as a child... and they grew again.... are fully there.
My body is working hard and I'm taking the best care I can.. it is tough going yet. I keep thinking that I'll be pleased to be looking back in the distance at this time one day. is that a glimmer of Hope I perceive?
The support and encouragement from Others keeps me going. thank you xox
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Dec 9th, 2004 20:42 |
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Friday December 10th 10.35am ish is Day 16 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
change > Benicar: 20mg Q3H & as wakes thru night.
Today I feel to have come to a clearing in the Jungle!! this is a better place to be. I may be able to see what is happening a little more clearly..Today I have been able to manage and to feel human again with the Benicar @ 20mg Q3H by having the NPS for the anxiety attack.
One day at a time. as I rewrite HerStory... Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Fri Dec 10th, 2004 03:18 |
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continuing .... Friday December 10th 5.15pm ish Day 16
Since beginning MP I have really tried to do without my Rx B12 and for the last month or so, my NPS... thinking that it may be best if I did so. Mystory> which were both Rx for me along with thyroxine, and which all enabled me to come off 3 years max dose prozac in 2 months only 1 year ago.
With the perpetual herxing I have been terribly sick and have recently become very weak & fragile.. I spoke to Meg & Dr M.
Meg says >>
" I think there is a difference between what you were taking and routine massive vitamin supplementation that we caution people about. The other thing that just occurred to me was that, in the beginning, when so many people were having trouble and we were trying to figure out why, we zeroed in on all those supplements and ignored the fact that these folks were out and about in the sun.
I believe that replacing hormones that your body needs but no longer can
produce is a good idea. . This is a very personal decision for women these days. If we encourage testing first and use of bio-identical products, I think that HRT
is not contraindicated with the MP. "
Thru last night when the fragility struck, I have restarted taking my NPS, and followed on today when I have experienced the weakness approaching.
This has enabled me to be more stable on the Benicar 20mg Q3h. and the daily 25mg mino.
It was too tough for me the other way, so I will see how I go now..
Today I was actually able to participate on the Board and make myself a pot of chicken & vegetable soup - which I have been unable to do for ages.
Thanks & Best to All...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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