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Aussie Barb
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Posted: Sat Sep 3rd, 2005 02:59 |
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Thank you to All for private messages..
Saturday September 3rd 4pm PHASE 2 / level .5 / cycle 4 / Day 7 / mino QOD > 50mg not today / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
Feeling discouraged today.. tired. heavy going.
Daughter is with us and ill..
herxing may be hotting up again?..
I havent been having the same active state of physical herxing to which I am accustomed..
that may be why I feel discouraged as well.. and being down is probably herx as well..
round and round..
I am still dependant on taking Beni and Q etc for relief but not as acutely.
I just keep myself to my usual one moment, one day at a time..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dogster
Member in Phase 3
| Joined: | Mon Jan 24th, 2005 |
| Location: | Kansas USA |
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Posted: Sat Sep 3rd, 2005 11:08 |
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Hi there Barb,
several things in your postings have been very helpful to me. Your concept and articulation of emotional herx. Mental herx creeping up and not recognizing until in your face. Your description of fine tuning use of mino or beni for herx relief (I'm not into stage of quercetin yet). Now, the other day when you stated cognitive things you used to do but no longer can (emails, certain people, certain aspects of household functions etc); I have gone into this stage (stage 3) in the last several years and realize fighting it doesnt help. You made a conscious choice to physically move (I think); I have didnt make a conscious choice but just creeped up into my life; glad I "see" it was a semi-conscious choice, now that is. Was worse when I was fighting it.
Also, just the fact you have severe CFS and are a year ahead of me--and keeping track of you!!!!
BTW, on Aug 24 post you said "relief" pills werent enough and went to the mino, 25 mg. What relief pills are you talking about. (I sure am not into suffering any more). Best, Dog
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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Aussie Barb
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Posted: Sat Sep 3rd, 2005 19:12 |
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Thank you Dogster ...
Sunday September 4th 8am PHASE 2 / level .5 / cycle 4 / Day 8 / mino QOD > 50mg today / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
when I speak about the relief pills not being enough
that means I have taken
Benicar at a 4H dose
Quercetin capsule x 3 daily
half a milk thistle twice daily
probiotic twice daily
natural progesterone spray prn for emotional state
and that I am still looking around for something
and I remember that something is mino 25mg....
In this last couple of days with the added stress of our daughter being so ill,
I have realised also more about the perception of herx..
I thought that I had stopped herxing because I couldnt feel it the same way..
and I also became discouraged at how awful I felt physically...
while holding it all together mentally and emotionally.. I am able to stay calm in the face of this dreadful situation.
but.... when I go to move around I can tell that I am herxing still because of how physically debilitated I am..
The extra stress has taken away my perception of the finer feeling / listening to my body / herx as I concentrate on how to help our Daughter..
so I can see how it would be so easy to lose the perception of herx in a busier or different Life..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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BARNEY
Member in Phase 3
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Posted: Sat Sep 3rd, 2005 21:34 |
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Barb,
I understand how you feel. My parents seem to go in a vicious cycle and I know they need MP but at their age, am not even suggesting it.
When you say you finally remember 25mg Mino.....how many times a day do we take 25mg? Can we take 25mg early in the day and then when I take my C qod can I take another 25mg mino?
I want to clarify this as I don't want to get into a herx I cannot get out of.
In a way, it would be nice to do MP with someone in the same house, but in the meantime, I am so sorry your daughter is so ill.
Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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Aussie Barb
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Posted: Sat Sep 3rd, 2005 21:59 |
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Thank You Barney...
Our Daughter and seriously ill Son normally live together (3 Hrs away from us) 25 miles from town, and they support one another.. so her doing the MP there and unsupported....... or here... away from him, doesnt look to be a possible consideration at this point..
re 25mg Mino: After I have taken the other steps to keep herx controlled as above post, and I still have a need to slow the herx.. I take the mino 25mg.. and most times that is enough, I dont usually need to take it another time till my QOD dose is due.. since Phase 2 that has been within 8 - 12 H of taking the 25mg.. those 2 doses usually pull it up.
as per the Intolerable herxing FAQ, frequent mino can be taken Daily, Q12H, or Q6H to a total of 100mg per day with the Benicar to slow the herx.
(A more frequent dosing schedule although seeming counter-intuitive may dampen the Herxheimer reaction because the dose of mino is maintained at the less effective (ie. higher) level. Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero.)
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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kathleen
inactive member
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Posted: Sun Sep 4th, 2005 00:58 |
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| Dear Barb, I hope that your daughter will be doing better asap. XXOOO Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Aussie Barb
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Posted: Sun Sep 4th, 2005 21:47 |
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Thank you All....
Monday September 5th 10.45am PHASE 2 / level .5 / cycle 4 / Day 9 / mino QOD > 50mg not today / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
When the herx is in a lull I say to my husband that I will increase next cycle.
and he says that I told him to remind me not to increase next time..
Next thing, the herx is back and I know what I meant..
.
.
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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 Sep 4th, 2005 23:59 |
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Me again ... Monday September 5th 1pm PHASE 2 / level .5 / cycle 5 / Day 1 / mino QOD > 50mg today / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
ant bite cramps hit..
left neck earlier, then all down Right arm and ribs...
need to take abx combo / begin next cycle... taken..
and hot pack.. relief..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DNStog
Advocate
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Posted: Mon Sep 5th, 2005 04:40 |
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Barb, Glad hubby was there to remind you!
Hugs, Donna still cruising ~~~~~ on Phase II
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Aussie Barb
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Posted: Mon Sep 5th, 2005 17:25 |
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Thank You Donna, Kathleen, All ...
Tuesday September 6th 6.25am PHASE 2 / level .5 / cycle 5 / Day 2 / mino QOD > 50mg not today / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
Symptoms that I have identified that let me know that it is time to begin the new cycle with the abx combo.
Hip and leg pain / unable to sleep.
hard antbite cramps in neck or ribs and down arm..
other symptoms may increase.. emotional, sludgey, coughing etc..
The new herx hit me good.. ugh!
another reminder.. still don't increase it next time..
this is my 5th cycle at this level and I am at 50mg mino so far..
The Phase 2 doc says that it may be necessary to stay at a dose level for weeks or even months until you feel that you can comfortably tolerate more herx..
I'm impressed.
.
all is tolerable..
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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 Sep 6th, 2005 12:30 |
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Wednesday September 7th 1.25am PHASE 2 / level .5 / cycle 5 / Day 3 / mino QOD > 50mg @ 44H today / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
Daughter still ill. stress.
when I see my daughter ill, I know that even with the herx, I have improved from that level of sickness.. we have had to be in touch with the 'world' thru this.. and it is so frustrating that people do not understand the degree of illness.
antbite cramp. woke chokey and mucus in throat.
took mino 50mg 4H early. took Benicar, will go to bed again.
I think my taste ability has improved.I am beginning to feel some stirrings / only thoughts so far, that I may be able to do some very little time of very tiny type of exercise or weights soon.
I am still very limited in do-ability but it may be a start.
my other symptoms that maybe of interest to others are:
numb hands when sleeping.
feet and toes changing degrees of swelling according to herx. I was surprised to see spaces between my toes, and went around comparing my feet and toes to check which was 'normal'.
body odor rises and falls..
numbness in palate.
pain in thigh bones when sitting.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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kathleen
inactive member
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Posted: Tue Sep 6th, 2005 19:12 |
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Dear Barb,
The image of you comparing your toes made me giggle. It really does get hard to remember what was normal pre-CFS.
I hope that your daughter will get medical help as needed and start to improve soon. All of the rest of us also.
XXOOO Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Aussie Barb
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Posted: Wed Sep 7th, 2005 23:59 |
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Thank You Kathleen, All ....
Thursday September 8th 1pm PHASE 2 / level .5 / cycle 5 / Day 4 / mino QOD > 50mg not today / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
info FAQ: what an ant bite cramp feels like:
Where I live, we have garden ants called green ants.. their sting really hurts.
an ant bite cramp feels like the green ant sting does, in the neck or muscles.
I also have an itchy toe with area of inflammation on top of foot. has felt bruised and itching. I notice that the MP meds even help this..
worn down
clearing throat continuous
full body herx is like heavy gravity but tolerable
gut herx.
.
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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 Sep 8th, 2005 17:19 |
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Friday September 9th 6.20am PHASE 2 / level .5 / cycle 5 / Day 5 / mino QOD > 50mg taken @ 44H / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
Strong chest herxing. all tolerable when taking care..
Was almost tempted to take mino 25mg at some times thru night, but settled each time with Benicar dose.
Chest pressure also flares when I lie down too quickly. so I have to sit up to let it settle before I lie down again..
Foot started off like a bite? now has itchy rash between 2 toes and on top of foot.. would be almost impossible to believe it is herx except that the MP meds settle it every time..
Toes are all fat again. must have been skinnier at the end of the cycle, causing the gaps between my toes.
I had had thoughts re some tiny exercise.. in practice that is impossible yet.
maybe a good idea to wait till I can at least do the washing up etc..
I am mildly short of breath all the 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: Fri Sep 9th, 2005 01:19 |
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Day 5
Stress. downish.
have been taking Benicar Q4H
mino 25mg @ 17H. took everything and began to pick up..
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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 Sep 9th, 2005 18:47 |
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Saturday September 10th 7.50am PHASE 2 / level .5 / cycle 5 / Day 6 / mino QOD > 25mg taken 17H ago / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
Chest pressure has been more.. waking thru the night.. Benicar helps.. I am wondering if my Thyroxine levels may now be changing, my thyroid function may be improving... so will have to get a test..
gut herx, rash on foot same.
I think I am experiencing the words of Belinda's FAQ What degree of healing is possible using the Marshall Protocol? which says in part: "Recovery of health will be as insidious as the original decline into disease and disability. Initially there will be instances of temporarily lessening pain and/or improved functioning, which may seem somewhat insignificant, given past experiences of waxing and waning disease. Over time, these pain-free episodes and improved functioning become more enduring. The eventual, cumulative effect of treatment is that the patient regains ability and health." << very insidious.. just an inkling...
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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 Sep 10th, 2005 17:02 |
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Sunday September 11th 6am PHASE 2 / level .5 / cycle 5 / Day 7 / mino QOD > try 50mg again today / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID
Less emotional herx.
a couple of sore spots on abdomen at times.
gut herx. rash on foot.
all tolerable..
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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 Sep 11th, 2005 19:25 |
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Monday September 12th 8.30am PHASE 2 / level .5 / cycle 5 / Day 8 / mino QOD > 50mg yesterday / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID.
the herx hit up soon after the mino for a few hours. then settled..
some mild face aching / glands in neck
gut herx. rash on foot less itch.
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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 Sep 13th, 2005 13:27 |
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News: Daughter is back on her feet.. will go home again soon. Thank You for all thoughts and messages... your support has been very much appreciated..
Wednesday September 14th 2.35am PHASE 2 / level .5 / cycle 5 / Day 10 / mino QOD > 50mg yesterday day 9 / Benicar 20mg Q3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID.
When I take QOD mino as 25mg I feel like a fraud.. for lack of herx..
yesterday, I took QOD mino as 50mg..
felt down in the mouth in the morning...
dressing simply etc is a huge effort.
We went out to Dinner..
very strong gut herx.. extra Benicar just scraped me thru
for day 9 that was big herxing..
.
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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 Sep 14th, 2005 17:55 |
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Thursday September 15th 7am PHASE 2 / level .5 / cycle 5 / Day 11 / mino > 25mg Q12H x 2 / Benicar 20mg Q2H & 40mg Q4H night (need wakes me) / Quercetin TID.
I recently became aware of a buildup of some symptoms (pounding heart / chest pressure type + etc symptoms) that seemed to be telling me that my need for thyroid med is diminishing as I am healing from MP.
I was aware that decreasing this med may also cause some hormonal adjustment symptoms and that Benicar may be my best ally.
As I am decreasing my thyroxine, the Heart symptoms have gone.. a relief.
The herx on the other hand became more continuous and debilitating, and I have used the Benicar Q4H and the frequent mino 25mg to keep the symptoms tolerable..
Because of the almost continuous herxing on day 10 yesterday I will for the first time, extend this cycle as required.
this morning so far, only my face and palate are aching .. gut may be just beginning..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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