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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Tue Feb 22nd, 2005 05:23 |
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Tuesday 22nd Feb 6.15pm no antibiotics tonight:
Benicar 20mg Q2 or 3H day & 40mg night <6h... Q BID
Some of us on the 2nd abx are finding that the it seems to be a very quiet & very good bacteria killer; that although we do not feel other *real* dramatic herxing as much, we are feeling very tired
No dramatic herxing seems a silly thing to say when I am reporting an almost constant wheezy cough etc.. and Benicar 20mg Q2H ..... but still, it is a quiet herxer somehow.
You may have noticed in my reports that I often have to go to Q72H and sometimes more (Q96H) to get a *clear day*, before I take my next antibiotics dose because of the herx / malaise etc.. and I have also had to decrease my dose x 2 because it crept up on me..
The thing about herxing / being tired, depressed etc on MP, that I dont mind at all, as miserable as it can be, and that I am not fit to do anything extra, is that I know that it is because my body is working hard for me, doing what it is meant to do... killing the bacteria, working thru MP.
At the moment it looks like an endless road. Health and Future are only words.. they don't mean a thing to me yet.. I live in this moment and do it as well as I can... which is not always pretty.. it isnt easy all the time, nor difficult all the time.. all I can say is I am doing it, and I am committed to doing it.
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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 Feb 22nd, 2005 20:00 |
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Wednesday 23rd Feb
Benicar 20mg Q2 or 3H day & 40mg night <6h... Q BID
The Herxing in MP makes us feel worse and we are happy to feel worse, knowing that it means we are getting better..
How can we be sure of this?
I had tried so many things over 24 years. and I had come to a point where I said I would not do another thing until I saw people who gained their Health from the treatment.
There are enough people ahead of me who are walking around able to live their lives, for me to be inspired and encouraged. and while ever I am killing bacteria / herxing, I know that I am on the right track.
I knew as soon as I read about MP that it meant that I would feel worse before I got better. and I knew that I had lots of inflammation to deal with. I could feel it, and knew how it was affecting my health.
How long would it take?
I think that I thought I would have experienced more improvement by now... But, I know now that it is not possible to go any faster because of the length of time I have been really sick. .. as I have done this, I have become aware just how much denial I was in, how I was struggling to *think* myself better, and to do it with supplements, that were never going to get me there..
Compared to the life I had pre MP this is not any worse quality, I am no longer struggling to push myself by *trying* to keep myself going. I just *go with the flow* now. I am happy. and I know it is *doing something*.. whereas, what was I able really to do for my Health before? wearing the glasses etc, being in the dark; I am more than happy to do and am not embarrassed to say or do whatever it takes.
what improvements have I experienced?
To the outsider improvements can sound small, but being able to live without the burden of even 1 less symptom is wonderful.
while I am still herxing well it is more difficult to get the feel of improvements properly.
Pelvic nerve and muscle function continues to improve. I am off my max dose prozac that I was flat out getting from 1 dose to the next without distress.
friends tell me I sound more peaceful and stronger. The peacefulness is worth a lot. I can notice brain improvements occurring in various ways. mentally emotionally physically. I have a Strength in my Spirit never before in my memory.
I can choose to do MP with the hope of good health, or I can choose not to... I figure that I might as well be spending my life doing something productive for MySelf.... I am committed to doing this for me.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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jsandman001
Member in Phase 2
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Posted: Tue Feb 22nd, 2005 20:43 |
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WOW........excellent report. I hope everyone reads this and hope you continue to have the grit to carry on and see your way to health. You deserve it.
Thanks,
James Sanders
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CFS, Lyme, Colitis,25D=12,6/30/2008, MP1/07, MPh2 10/07, restart Ph1 01/08, klonipin, Zyrtec, Asacol, NoIRs, cover up, low lux home
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Tue Feb 22nd, 2005 20:51 |
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Yes, Barb, ditto, excellent description. 
I can honestly say I can relate to feeling that way too. I don't mind feeling worse again, while herxing, since it's not any worse than pre-MP.
I was one of those that felt much improvement on Benicar alone, so going on the abx has brought me back to where I was before that, most of the time.
There are glimpses of improvement in between herxing, but I KNOW this time, even if it takes me longer to feel well, than I had planned, I'm not suffering in vain as in before the MP.
Thanks for sharing, as you so graciously do.
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OzJen
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| Joined: | Mon Nov 1st, 2004 |
| Location: | Perth, Australia |
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Posted: Tue Feb 22nd, 2005 23:39 |
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 Yes Barb, true Aussie pioneering spirit, inspirational!!! What we wouldn't give to have some objective measurement of progress, seeing as the symptoms give us so few clues.
I have family constantly asking me how I feel and obviously needing to hear me say I am feeling better.
How many less CWD do you have since you started - now that would probably be a mighty help, eh? As it is, even before the MP, we have to develop grit, determination, perseverance, dogged persistence and at times summon bravery we don't know we have.
All these things will serve us well into the future, even after the MP. Won't life be a breeze when we are well?
Jenny
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CFS 24+yrs;
R.conori, Q fever antibodies
1,25D 8/10 64.6
25D 4/3 19.6
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BARNEY
Member in Phase 3
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Posted: Wed Feb 23rd, 2005 01:20 |
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Barb,
You sound like I was feeling. You are a 'treat' to me. I look so forward to what MP will mean to me in the end. It already means a lot.
Hang in there, we will make it. Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Wed Feb 23rd, 2005 08:16 |
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To be trying to deal with these previously unrecognised illnesses in the face of Society and relatives, and Drs who have not been able to offer us any *real help....
and now for us to find and be able to support each other and be supported here with unprecedented Hope is amazing.
I thank you all.. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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CelticLadee
inactive member
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Posted: Wed Feb 23rd, 2005 20:24 |
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WOW Barb! RIGHT ON! 
That is truly a beautiful and inspirational post! You have such a terrific outlook. Everyone else added their good thoughts too and I thoroughly enjoyed reading this positive thread. Thank you all for such an uplift!
I totally agree.... we have all been frusterated and treated poorly because of our "untraditional" disease. Our friends and family would have treated us with so much more compassion if we had told them we have "cancer" or "heart disease". My various doctors before MP weren't a whole lot of help because they aren't trained properly to do so. So I tried different supplements, transfer factors, etc. out of desperation and some did make me feel a little bit better. But we had really NO HOPE of remission. Very sad picture eh? 
Then along came Dr. Trevor with his protocol and answers to so many of our questions PLUS hope that one day we too can join the Sarcies in remission. Something inside of me bloomed and it hasn't died.... HOPE! WE all have hope that one day we will conquer the CWD bacteria and control the D dysregulation and live a freer life! It is worth every single moment of herxing to know that we have this chance. The beauty of it... is it is safe ... it can be done according to your personal management to a large degree. I'm celebrating with you Aussie Barb!
Why wouldn't we do the MP? What's the choice? I don't see any do you? I too am SO glad we have the opportunity to do the MP. I appreciate the doctors that have compassion on us and are willing to help us do it. I am thankful for this group of wonderful people at this board that give so much time, so much love and support.
Bless you Barb for your loving generous spirit! I love your vision .... I see it too!
We do have HOPE!
Love ya much,
xoxoxo CelticLadee 
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FM Dx 9/2002| Pericarditis Dx 7/2002| CF migraines MCS IBS food sens <Shingles 2001| NoIRs/ZO 25% cream| MP8/04| PH2 1/05| PH3 7/06| 25D/1,25D: 27.9/63.9 (07/04) 25D: <4 (02/08)
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Thu Feb 24th, 2005 07:25 |
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Thank You All
report for Wednesday 23rd Feb
no herxing so took ABx 50mg mino + 3/4 new antibiotic @ Q48H
Benicar 20mg Q2-3H day & 40mg night <6h... Q BID
too tired to write Report. herx anxiety. ie not true anxiety.
Thursday 24th Feb 8.15pm
very tired day, *in a bubble* resting sleeping, herxing: cough, sick and all gut sick to touch. anxiety a/a.
when I write *in a bubble* strikes me that that is what I reached when I had to decrease the abx last time.. will have to watch that..
What is my abx *schedule*? for the poor people who are trying to follow this crazy road..
I am a girl who goes by *feel*
so I am not on a specific schedule. Well, the schedule is Q48H with a flex ...
I feel what the herxing is up to
and how much Beni I am having to take ?Q2H a lot of the time for managing this coughing. the herx is quiet but fairly constant some of the time..
and I choose each and every time.. so sometimes it is Q48H or Q72H or Q96H.. and sometimes it just gives me a day's break.
When the herx is minimal for a good amt of time ? maybe for 1 or 2 doses I would be considering increase.
I have had to decrease x 2 so am watchful.
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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 Feb 25th, 2005 04:27 |
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Friday 25th Feb 5.25pm no abx @ Q48H tonight
Benicar 20mg Q2-3H day & 40mg night <6h... Q BID
herxing: struggling, very tired day, managing by resting sleeping & meds, depressive anxiety, cough controlled by Benicar & Q, skin is herxing sticky oily, body odor has been strong herxy, puffiness still.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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FeatherRiver
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Posted: Fri Feb 25th, 2005 11:14 |
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| Gosh I know that "bubble" feeling - I have to work and I feel so isolated - even tho I'm "in the world" I feel so apart from it cause I'm so sick - I'm going thru the motions but it takes me three hours to do a 30 min. job - and as sick as I am - I do not "look" sick - and I am not sick enough to stay home in bed, like with the flu. You are an inspiration for us and we appreciate your diaries - I am going thru a special little herxing eposode - Steve and I were laughing about it finally, after we figured it out and it stopped scaring me so bad, that everytime I seem to exp. some illness, he has patients walk in with the same issue soon after and he said he already had a patient that after noon and was able to get her immedate help, that he might have missed - so who knows what plans God uses us for. As I said, I think you have a great book when this is all over that will help millions! Then you will be able to travel the world and have tons of fun with your family! Love to you
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DianaF:CFS,Fibro,RA since childhood, Dysautonomia
VitD 22/33, 7-04,Started Ben.MP 5-04 Ben 40mg q6h + Mino 100mg q48h + Quer as needed, Phase II Started Jan 15, 05 Ben 40mg q4h stopped mino and Z temp 2/22/05
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Aussie Barb
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Posted: Fri Feb 25th, 2005 19:05 |
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Saturday 26th Feb 8am
Benicar 20mg Q2-3H day & 40mg night <6h... Q BID
Slept well. and woke to a better me today.. aahhh... relief..
so it is all herx.. though when in that *state* of being, I worry what else can it be? but of course it is always herx. I am still tired but no misery.
I notice that I am more light sensitive recently.. I am better with the over head light on.. the light behind me even gets in my eyes!!
plan: take abx combo tonight.
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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 Feb 26th, 2005 16:39 |
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Sunday 27th Feb 5.40am
Benicar 20mg Q3H day & 40mg night <6h... Q BID
I was too tired last night to take the abx. slept till 2am and then up at pc.
took ABx 50mg mino + 3/4 new antibiotic @ Q84H this morning.
I do feel brighter this morning. the herxy cough is still with me. skin on palms of hands feel *funny. gut inflammation is ever present one way or another.
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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 Feb 26th, 2005 21:29 |
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continuing ... Sunday 27th Feb 10.30am Benicar 20mg Q2-3H day
Usually I take my abx at night.. this time I had waited till I felt better and clearer, Q84H, this morning.
within an hour of taking them, it was like *whack*.. dizziness, and allover herx feel.. sick, cough exacerbated etc.. It was so much more obvious than when I take the meds and go to bed.. and wake up day after day feeling hung over..
It is a help to have seen the dramatic difference..
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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: Sun Feb 27th, 2005 22:51 |
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Monday 28th Feb 12MD Benicar 20mg Q2H day
Sunday: too much herx: sick, tired, but slept rested to escape it.. oker last night.
Monday: this dose has snuck up to too much again so I will have to decrease next time.. In the meantime: this morning: this is intolerable. too sick. too miserable: Benicar 20mg @ Q2H and took Q. took mino 25mg to delay bacteria killing..
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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 Feb 28th, 2005 16:59 |
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Tuesday March 1st 6am
Benicar 20mg Q2-3H day & 40mg night <6h... Q BID
Monday: the mino 25mg relieved the intolerable herx but still sick weak tired. rested and took care.. at bedtime, took a dose of milk thistle to help my gut inflammation / herx.. slept WELL.
Tuesday: woke feeling better.. I wont take another mino 25mg unless I need to today.. and will plan to take a reduced dose of my combo abx tonight.. and will decide on a different way of increasing next time..
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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 Mar 1st, 2005 08:07 |
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Tuesday March 1st 9pm
Benicar 20mg Q2-3H day & 40mg night <6h... Q BID
a better day: still tired, resting sleeping, herx cough relieved by Benicar. no anxiety / misery.
Decided tonight to Not take scheduled abx: to have a rest.
Took mino 25mg @ Q36H from last same dose.
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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: Wed Mar 2nd, 2005 04:17 |
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Wednesday March 2nd 5.20pm :on abx holiday: Day 3 on mino 25mg daily for now..
Benicar 20mg Q2-3H day & 40mg night <4h... Q BID
very tired: sleeping resting today: thinking I need a while off the abx schedule yet.. so will continue on mino 25mg daily for now..
I had a few days on 25mg daily 4 weeks ago when we had visitors for the weekend; but it wasnt really a true holiday.. so will do this again and for longer, to have a better rest...
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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: Wed Mar 2nd, 2005 16:20 |
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Thursday March 3rd 5.20am on abx holiday: still strictly avoiding D & Light:
Benicar 20mg Q2-3H day & 40mg night <5h... Q BID
The herx weight is lifting from me some: it is a learning experience in itself. I still have some residual yet, but it is lifting. my appetite has returned and I am not constantly *sick*. and.... there is a sense of some brighter shinier under there..
I have chosen to stop to smell the roses for awhile for a few reasons.
A couple of *good MP people who care* have suggested it to me for a long time.. and I haven't felt ready till now. I was wanting to forge ahead.
Now I am ready: I wanted to experience what happens: for myself and for others ..
I am aware that some of us just insist on pushing that herx flat out.. and I needed a break..
I can see that I have improved mentally.. I will tell more if more comes to light..
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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 Mar 3rd, 2005 11:31 |
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Thursday March 3rd 11.55pm Was on abx holiday 25mg mino daily x 4 days: strictly avoiding D & Light:
Benicar 20mg Q2-3H day & 40mg night <5h... Q BID
Herxing has continued but differently: I have found that my Immune System is turned on and wont stop, the same as before I comm the 2nd abx..
skin herxing: very tired, cough cough cough. very lot of sweet herxy body odor.
improvements I have found: are Mental: a feeling of *I am the Queen of my Castle* ie not to say that I am all the way there nor even a good way there, but better than in Living Memory.. it is wonderful.
Took the mino 25mg 6pm (short of the Q24H) cos coughing. and the Benicar 40mg @ 9pm.. went to bed..
2 hours later: SOB, tight cough, herxing gullet, antbite cramps under arm. I had learnt Something! I knew what would stop it.. I took 1/4 capsule of the 2nd abx.. to go with the 25mg mino I had taken earlier.. so I am back at the starting dose again.. of mino 25mg + 1/4 caps 2nd abx....and the cough has settled since the 2nd abx dose..
so the holiday I am going on now, is going to be restart and go slower on the herx holiday..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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