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Aussie Barb
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Posted: Wed Dec 22nd, 2004 21:31 |
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Thursday December 23rd 8.30am 4th dose of mino 25mg + 2nd ABx} Q48H abx combo QOD last night: none today.>  <overview here
Benicar 20mg Q3H & 40mg night.
Milder gut inflammation herx last night. will see if anymore herx shows between now and next dose.
Even though I'm not *well*, - since having the continuous herx finally relieved, I am feeling better than I have for months. I am excited about the noticable change / lift.
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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 Dec 23rd, 2004 00:43 |
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tired sleeping a lot today.
interesting symptom: the place where the hotspot sometimes is... left rib *muscle* has developed a tic.... it will involuntarily go *tic tic tic tic*... it actually moves, there's a break, .... and more... etc..
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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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Tobi
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Posted: Thu Dec 23rd, 2004 20:45 |
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Barb,
You have such a gift for describing these weird symptoms. Your descriptions help others not to feel so peculiar with our assortment of strange tics (no pun intended), lumps and bumps and strange sensations. I would never have thought to mention the "sweet B.O." if you had not, but, after first thinking the fabric of my two new T shirts smelled odd, I realized it was ME. Sweet is the word - almost like cheap talcum powder. This has started only after the first two to three months on the MP. I'm taking it to be a Good Thing. Is this a common experience?
Hope you get some rest over the long weekend - my guess though is you'll be taking care of everyone, just as you do here.
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Aussie Barb
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Posted: Thu Dec 23rd, 2004 21:31 |
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Dear Tobi
thank you 
odor : cheap talcum powder is right on!! thumbs up
I find the odor is more when doing the harder herxing. so it must be the pretty dead'n's ....
That tic tic tic symptom: is like a baby kicking or a butterfly flapping !!!! in the rib *muscle* .... it is amazing!!!! I am sooo intrigued by this..
taking care: Tobi... the first person I take care of now is me but thanks for your kind thoughts..
I think we who have lived with this disease are all Heroes.
as this is my thread it wont be off topic to share what I wrote last night as I pondered the past: .... and contemplate what a brighter future may actually mean to me, to us ...??????
Christmas / Heroes / Life: Thoughts of *coming out*- of telling the Truth:
I have been thinking about Christmas.. and what it means to most people and what it doesnt mean to us.
it usually means shopping and preparing and celebrating.. all far too much for me to manage ever. without giving a thought to any other aspect. grocery shopping has always been my limit.
we say in our Family that we have Christmas every day. because we eat well and love each other and take care of each other every day.. and that is what is so important and is such a Blessing.
I was wondering just how many years it is since we have really *done* Christmas..
I was thinking about how I have been sick unwell, and that most people / family had no idea, as I couldnt *come out* as I struggled to make sense of it for MySelf.
thinking of how it has been so terribly exhausting to send cards, and how I have done so because it was the one time of the year to make the effort to *give* this small token to those I / we cared for.
so while we were flat out to get off the bed to have the obligatory ham sandwich for Christmas lunch .... my family and friends were not aware of my dilemma.
I couldnt invite family or friends because I was too ill to cope... and yet I agonised over not being able to carry it out. over not being able to invite my family... over not being able to *be* who / where I wanted to be, because I was so ill.
so when did this sickness really begin?
I have been terribly sick and fairly well bedridden thru all of my pregnancies right from the start. and didnt recover between one pregnancy and the next. and then never ever recovered at the end.
In amongst all this I have raised a family and worked in our Community .... and I have put up with people who did know I was ill, telling me that it was due to my *wrong thinking*, and another one is / was that I need *their religion in my life to heal me...
we have travelled thousands of kilometres and shed many tears, spent thousands and thousands of $$$$ trying to help me find Health. the financial mental and physical and emotional anguish and cost is incalculable.
when I really think about how unwell I have been and when did it start?? it has been all my life... but I sure have put on a brave front... so nobody would know... not even me ....
~~~~~~~~~~~~~~~~~~~~~~~~~
Here's to Our hoped for Brighter Future!!! To All of Us!
Thanks for being such good travelling Companions..
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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 Dec 23rd, 2004 22:05 |
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Friday December 24th 9 am have had 4th dose of mino 25mg + 2nd ABx} Q48H abx combo QOD : 5th dose due tonight.> <overview here
Benicar 20mg Q3H & 40mg night. + extra for hard herx.
well! ahem... the milder symptoms and feeling improved did not last long...
I am still getting plenty of kick at this dose yet by the feel of it..
symptoms: tired.. butterfly flapping in rib muscle. some Heart pressure transient. gut inflammation flared. so much that I had to take extra Benicar to cope..
I notice that as I need more Benicar (the 1,25D will be rising from herx) the anxiety swings in.. but the Benicar relieves that too then..
this morning as I write: no herx.. what's a herx?
there is plenty of killing happening.. it is exciting to me to think that after a Lifetime of sickness and no known help.... that I am ON MY WAY!!!!!!
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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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Tobi
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Posted: Thu Dec 23rd, 2004 22:19 |
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Barb,
The strain of pretending to be a normal, coping person is huge. As you say, enduring the "advice" of people who really mean well, but haven't a clue, is an exercise in patience. Not being able to do with joy and enthusiasm lovely things for family and friends is a shocking loss - it is sad when one feels only relief that you don't have to attend that wedding, that dinner, because you can't, and you'll be able to be alone and rest. Let alone the fear that you are suffering from some terrible undiagnosed disease and you may just deteriorate on and on. And how you rob your husband and children of a well and energetic wife/mother. And how you feel guilty that they worry about you so much.And how you can't go places together. How it feel like being in jail, although the door is not locked.
I've read somewhere a post by Trevor where he describes how it feels to be getting more and more well and how joyful that experience is.
Hopefully we'll all be there soon.
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Aussie Barb
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Posted: Fri Dec 24th, 2004 19:52 |
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Saturday is Christmas Day 7 am have had 5th dose of mino 25mg + 2nd ABx} Q48H abx combo QOD last night: none tonight.> <overview here
Benicar 20mg Q3H & 40mg night.
I seem to have turned a corner... onto a different set of symptoms.... I couldn't lie down & rest yesterday.
Yesterday afternoon pre ABx dose > I went into (no reason) emotional fragility and *frog in throat* / moist cough, feeling *sick.. <with me that is from the gut inflammation.
slept well. woke very emotionally fragile + the above symptoms + Heart aura & various transient bone pains.
distraction by computer (or sleep?) seems to be the best treatment for the fragility at the moment.
it will be a quiet day. I am alone and am fine with that.
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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 Dec 24th, 2004 20:00 |
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Aussie Barb says, "it will be a quiet day. I am alone and am fine with that."
You are never alone Barb. We are all here with you, on the MP, in cyberland. 
MERRY CHRISTMAS! 
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Aussie Barb
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Posted: Fri Dec 24th, 2004 20:09 |
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awwww... yess indeedy.. I am never alone!!
thank you (((Reenie and All)))) ..
HavaHappyHolidays!! xoxox
~~~~
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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 Dec 25th, 2004 04:58 |
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<< from this topic Intruding bad thoughts here..
this probably belongs here in my progress report as much as anywhere...
I wrote: I have just remembered:
that at times I have experienced intrusive self deprecating, incriminatory of (supposed) guilt / wrongdoing, anxious agonising depressive thoughts..... from toxicity? both pre MP and MP.
pre MP I used charcoal tabs to absorb the toxins and that worked well.. but now it is too difficult to fit the charcoal inbetween the MP meds so that it is not absorbing them.
One thing I find most Important is to recognise it for what it is when it comes along ...... that the thinking is not *real. to KNOW that it is *sick. that these thoughts are simply Not True..
it took me some time to get into the practice of recognising that I was being conned, & to remember what to do when it does present. faster recognition of both comes with practice..
for me I feel that it comes from my gut and not from my head.. if anyone can work that out..
and then to either remember to eat, helps. & I need to and do take my Benicar 20mg x Q3h all the time. and have adequate rest. overdoing may exacerbate symptoms.
Trying to *combat* the thoughts has always been too exhausting for me, more than I could manage.. but I have found it interesting that they could be immediately resolved by taking Charcoal tablets which absorb toxins.
It is difficult for me to remember anymore at the moment .. it may actually happen from the high 1,25D from either light exposure or herxing, so by keeping on top of all that must help..
I do know of others who have this experience; and I share this in the hope that You may find some help in it, and comfort that you are not alone.
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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 Dec 25th, 2004 05:06 |
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continuing ... Saturday Christmas Day 4pm have had 5th dose of mino 25mg + 2nd ABx} Q48H abx combo QOD last night: none tonight
The Bat Cave or Bear Cave was the exact right place for me today. << the emotional fragility is ok as long as I don't talk to anyone.
I have herxed most of the day: slept / rested on bed in the dark with cooling air con on all day. cramping around Heart and down left arm. sick from gut inflammation.
starting to feel a bit clearer now.
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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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OzJen
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Posted: Sat Dec 25th, 2004 18:07 |
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Hi Barb! I am not sure if I am happier about finding the MP or about finding that there are so many people with my exact same problems out there - and my exact same reactions. I can't tell you what a relief it has been to me the last 2 years to be alone on Christmas Day. No having to pretend I don't feel like throwing up or some such antisocial thing. No more having to act normal, when absolutely nothing about my life is normal any more. No more having to take along my own water, food and supps and feeling like Linus with his blanket lol!
I keep going when the going gets tough by reminding myself that we never really know what great thing might just be around the corner. That is no small feat for someone who has found so many foul things around those corners. Still, the attitude of mind is so important. Ignore those ridiculous thoughts. I found out a long time ago that depression and so forth are part of the illness, so when my mind is acting up, I treat it the same as if my leg or stomach or whatever are acting up. Another symptom that will be ancient history one day, and usually eases in a day or 2 to where it is bearable. I can tell that you are doing something similar. Better than antidepressants and all those side effects I reckon. I just dont' listen to myself. If you get my meaning.
Come on (Aussie) Barb, come on, come on!!! YOU ARE DOING IT, YOU CLEVER, BRAVE PERSON YOU.
PS I am in favour of telling everyone about my illness and letting them do with it what they will.
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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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Aussie Barb
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Posted: Sat Dec 25th, 2004 21:37 |
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Thanks Jen.
News Flash: MP brings me / us *out*.....
3 years ago, My Children having now grown, I made the move away from the Community where we had always lived. I needed to be in a type of cave away from all obligation & not wanting the phonecalls or visits, I had passed my contact details to few.
Recently through doing MP I MySelf have been coming to terms with what the Truth is,
I am finally being able to give the heave ho to those taunts of *wrong thinking* etc that we have endured for soo long... finally being able to acknowledge still yet slowly for MySelf, that I AM in reality > sick, that we have indeed been / are very very very ill, and that only our great strength and endurance has kept us surviving.
The understanding of MP has shown me that I have no need to be embarrassed that I am unwell. Thru MP I am taking care of me in a very positive active way, and I will be doing it as long as I need to, thank you very much.
This Month I wrote my *coming out* letter & sent it out.
>>>>
"Dear Family & Friends
As You all know I have been very unwell for a very long time.
This has meant that we have not been able to visit or to go to weddings, parties, reunions, get togethers, etc, or to even email or write to you or call you as we would like to.
We haven't *done* Christmas for many years.
I am undertaking a treatment which will take some time to complete, and in the meantime, I feel worse. It involves my avoiding light, and taking medications. I am hoping to find good health.
I am conscious of Time and Lives slipping away.
We have lived here for over 3 years.
We invite You to visit us at our home
@ ............... etc etc... " <<<<<<
On a similar note, I received this letter from a CFSer friend also on MP >>
"In part I feel sweet sorrow that I might make it out of this illness alive and well while others, I've met too many, including one who I loved so much, have taken their life because of the incessant pain of whats only shallowly been thought of as a terminal mental illness which is now looking like essentially an infectious problem that has always been waiting there to solve. We've been sick for so long and know things that folks that have always had their basic health can barely comprehend.
But I think its time for this miracle to happen and we show ourselves as
well as the those already healthy folk the celebration life is meant to be. " <<
I have been unwell so long that I have no comprehension of what good health may even mean for me. I have learned to live my Life one moment at a time, doing what I need to do in this moment.
Thank You Dr Marshall that we are finding Our dignity along with our Health.
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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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Tobi
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Posted: Sun Dec 26th, 2004 05:58 |
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Barb,
These types of message are every bit as important as the practical info given on this board. Bless you for being so open and generous with yourself and saying it like it is. It's a lonely road, that's for sure. It's a sad day when one moves away from "friends" because their presence and expectations are unbearable. This may sound horrible, but I have wished for all those who have offered unsolicited advice, made hurtful comments, etc., to be able to feel these symptoms for just a half hour. Just so I could hear them say, NOW I know how you feel.
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Aussie Barb
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Posted: Sun Dec 26th, 2004 07:40 |
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Sunday: is Boxing Day 6.30pm have had 6th dose of abx combo QOD tonight mino 25mg + increase to 1/2 of 2nd ABx} Q48H : <overview here
Benicar 20mg Q3H & 40mg night.
It has been a day of *hanging on*> mild anxiety, resting, small *butterfly flap* symptom in rib muscle. some mild Heart & bone cramping. all mild so increased the abx.
____________________
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: Sun Dec 26th, 2004 18:47 |
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Monday December 27th 5.30am had 6th dose of abx combo QOD last night mino 25mg + 2nd ABx} Q48H : <overview here
Benicar 20mg Q3H & 40mg night. 4h
Slept well. took Benicar thru the night to make sure I was ok with the increased abx dose.
Woke with mild anxiety in the chest area, which moved to the gut area. resting (as usual). seems to be settling now. so far no other herx symptoms.
Body is working hard. I can't eat much when like this. all very interesting.
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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 Dec 27th, 2004 03:37 |
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Mino overview:
Sept 10th to Oct 3rd: from initial dose of 1.5mg up to 12.5 mg (3 weeks)
the mino stint being @ Aussie Barb Page: 1 2 3
& stop due to broken / no NoIRs: and continuing on Benicar only with continuous intolerable herxing.
Recommence Mino
Nov 7th from 3mg to 4mg Q48H, to 4mg Q12H...
to 12.5mg Q12H to delay intolerable herx (2 weeks)
Nov 24th - 15th Dec. to 25mg Daily to delay intolerable herx (3 weeks)
Dec 16th : New ABx (@ 1/8) commenced + 25mg Mino QOD > herx controlled!
Dec 17th : incr New Abx to 1/4 + mino 25mg QOD cont....
Dec 26th : incr New Abx to 1/2 + mino 25mg QOD
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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 Dec 27th, 2004 04:14 |
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Monday continuing ....
I am surprised. No real herx yet today.. butterfly is flapping gently in rib muscle and knee ! I am resting.
anxiety is gone..
I seem to get a *hunger / *need for more abx when the dose is due and when I need to increase it.. the hunger shows itself in my *going downhill* / to unbearable... and needing the / more meds to uphold me physically emotionally mentally .. it is not the same as the herxing... it resolves with the dosing .. interesting .... >>
re Dosing:
when I am on *enough / adequate dose abx, I can keep the anxiety/ body dysfunction etc at bay by taking the Benicar on time or sooner.
when I *need to increase the abx dose, no amount or frequency of the Benicar will uphold me.
____________________
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 Dec 27th, 2004 17:38 |
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Tuesday December 28th 5.30am had 6th dose of abx combo QOD last. 7th due tonight mino 25mg + 2nd ABx} Q48H : <overview here
Benicar 20mg Q3H & 40mg night. 4h
rib muscles almost constantly jumping rattling VISIBLY moving. 
22hrs after abx: achey sore diaphragm area ...???? >> sore muscles from constant movement (above)!!!!!
24hrs and on> Right side abdo and around to back all herx. and then gut inflammation in a different way. all keeps me steady and slow. feet esp right one have been a little puffy the last few days.. I rest and take care and drink water. Body is working hard. I am happy about this.
the gut inflammation is a constant and flares up in herxing. wakeful & then slept well. and all is well..
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Tue Dec 28th, 2004 17:12 |
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Wednesday December 29th 4.30am had 2nd dose of mino 25mg + 1/2 2nd ABx} Q48H combo QOD last night <overview here
Benicar 20mg Q3H & 40mg night. 4h
visitors yesterday.
as all symptoms are still bearable after 1 dose of the 2nd abx being increased, I wanted to increase the mino to 50mg last night, , but thought I had better give it a chance to see first. better not be rushing in.....
rib muscles almost constantly jumping rattling VISIBLY moving.
some herxing in gut inflammation last night. 1 bout of right rib cramping again.
slept well. woke 3am with terrible cramp / knot in right calf leaving leg very sore at the moment. otherwise fine.
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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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