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RobertTownsend
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| Joined: | Wed Oct 19th, 2005 |
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Posted: Mon Feb 13th, 2006 22:37 |
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Hi Ann
I've just sold my wheelchair this last weekend. The rest of the family think I have done this too soon and that I should keep it.
But I just got so much satisfaction out of seeing it go. Also I've not needed to use crutches for several months so I think I am on safe ground.
So do hang in there - your turn will come
Best regards
Robert T
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Mon Feb 13th, 2006 23:59 |
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 Thank you All... Happy Valentines Day! 
Tuesday February 14th 10am / mino 50mg Q12H. / 7th dose of 2 abx today 9am / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / PBX TID/
Taking mino 50mg Q12H + the Benicar and Q and Pbx as required.
Visitors yesterday.
Mother and Sister and Bro-iL
meds all taken before hand. herx stayed quiet while they were here. except for the body aura, the need to sit.
Mother doesnt understand.
Sister and BiL supportive and interested.
I am strong enough in myself now that it has just 'happened' that it doesnt matter what anyone thinks or says, and it seems when some folks sense that strength they are less likely to speak against.
I managed well with husbands support of course.
gut and diaphragm herx rose again after they left.
antbite cramps. may indicate getting close to increase of 2nd abx, therefore needing it before 48H, but I increased the Benicar to Q4H to get thru.
and took same dose level of abx today to assess.
today there is a little pulsing ache in the L front tooth.
some catching up for me after the visit. fragility. I am keeping meds tight to take care of me.
Slept ok.
ADD 3pm: the herx is in full flight today. R upper abdo quadrant in particular. using all meds to manage.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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ShrnHml
Member in Phase 2/3
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Posted: Tue Feb 14th, 2006 06:51 |
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| Barb........first I read that you are out and about in a wheelchair. Then I read you have had company. Sounds good to me. ..................Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Tue Feb 14th, 2006 22:36 |
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Thank you All... Happy Valentines Day!
Wednesday February 15th 8.45am / mino 50mg Q12H. / 7th dose of 2 abx yesterday 9am / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / PBX TID/
Taking mino 50mg Q12H + the Benicar and Q and Pbx as required.
Diapragm and liver area herx high yest.
meds tight to hold.
Body herx/aura.
the little pulsing ache in the L front tooth continued. not here today so far.
couldnt sleep till 2am then slept till Beni alarm 6am.
usual 2nd day fatigue lay flat.
ADD: from 3pm on. fighting off mucus cough and fragility with meds.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Wed Feb 15th, 2006 23:11 |
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Thursday February 16th 9am / mino 50mg Q12H. / 8th dose of 2 abx today 9am / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / PBX TID/
Taking mino 50mg Q12H + the Benicar and Q and Pbx as required.
Tired
Body herx, mental emotional herx, chest herx, mucus cough, chokey, wheeze,sob.
meds tight to hold.
Slept well.
woke feeling weak. body aura, best to sit.
took abx combo. hope to pick up.
other symptoms same:
swollen feet ankles etc
subcutaneous ouch
eyes blurry sticky.
transient mild bone pain arms shoulders.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Thu Feb 16th, 2006 20:36 |
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Friday February 17th 7am / mino 50mg Q12H. / 8th dose of 2 abx yesterday 9am / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/
Taking mino 50mg Q12H + the Benicar and Q and Pbx as required.
Tired continuous. this combo.
Body herx, mental emotional herx, chest herx.
meds tight to hold.
Slept 4H.
body aura, best to sit.
other symptoms same:
face itching oily continues
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Fri Feb 17th, 2006 22:51 |
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Saturday February 18th 9am / mino 50mg Q12H. / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/
35H after 8th dose of 2 abx combo
Took 9th dose of 2 abx combo + 1st dose of 3rd abx
Last couple of days had been awful. mental emotional herxing, fatigue.
I watched and wanted the knowledge of time to increase to be clear cut, to make sure I wasnt jumping the gun. but it was like going downhill slowly and getting lost.
Although I was able to get some temp relief using the Beni and Q, body function was declining, till I finally knew I had to increase or add something.
so I have added the very small dose of 3rd abx. good.
almost straight away, it was penetrating the muscles at the base of my skull.
could feel it deep in muscle tissue all night.
transient cramping muscle pull feelings in back of neck.
woke aching all over.
took meds this morning and am ok. some nausea.
Add 2pm: the increased abx has helped. no mental and emotional now.. for me, mental & emotional is the toughest.
5pm: body herx.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aunt Diana
Advocate
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Posted: Sat Feb 18th, 2006 08:27 |
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I empathise with you Aussie Barb. It must mean your getting at some "bugs" that have been evading this for a long time. As hard as it is to go through and as miserable as one gets....at least you can tell yourself you're killing bugs. And they've survived this long, they don't want to go.
Just go slowly....maybe you should spread it out a bit, or tamp it down....who am I? to be recommending things to you.
Maybe you just have to lie there and allow the herx to take you over until it subsides. and take a break from these duties ....to give yourself the time and room to recuperate.
I don't know of course. you know far more than I do...but we need you to keep on "keepin on" so make it as painless as you can....what about pain killers? Do you think they might help, I find 4 Advil can really take the edge off the pain and there must be more potent paint relievers you could take. They may make it a bit easier.
I've come off of my bad herx, thanks to your advice, and am actually feeling good and productive today...not great but good. I think I'll stick with the 3 dosing for awhile.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
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Posted: Sat Feb 18th, 2006 10:02 |
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Thanks Diana,
Increasing the antibiotics did the trick very well.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Sat Feb 18th, 2006 20:47 |
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Sunday February 19th 7am / mino 50mg Q12H. / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/
Took 9th dose of 2 abx combo + 1st dose of 3rd abx 8pm Friday
when the Q12H mino is due, bad antbite cramps under arm and in rib muscles, which then settle after mino.
tired, went to bed early. wakeful with sore throat herx.
took Benicar early. na.
took Panadol (tylenol) x 1
slept a little, woke.
realised it was the gut herx keeping me awake. took probiotics, and slept well.
woke with bad bone pain in my upper arms for Benicar time. slept.
42H. 2pm: 2nd dose 3 abx combo.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Sun Feb 19th, 2006 21:08 |
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Monday February 20th 7am / mino 50mg Q12H. / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/
Took 2nd dose of 3 abx combo at 42H yesterday 2pm.
I realised I was in a downturn again, had taken all MP support meds so the combo was next.
the combo lifted me in 2 to 3 hours.
Body and gut herx.
feet less swollen recently.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Mon Feb 20th, 2006 21:03 |
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Tuesday February 21st 7am / mino 50mg Q12H. / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/
Took 3rd dose of 3 abx combo today 7am.
mentally and emotionally: Have picked up to what I was.
gut and body herx continue.
using MP meds as listed above to hold herx to tolerable.
when close to the Benicar or antibiotics due time, the antbite cramps in R arm and rib muscles begin and are hard and intolerable. dose relieves.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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supersarcboy
Member in Phase 2/3
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Posted: Mon Feb 20th, 2006 21:44 |
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| HANG IN THERE BARB....We all love you! It's hard to think about you hurting. Sorry to hear you are having such a hard time. Don't forget to take good care of yourself like you do for so many others. You are #1. May you feel relief ASAP. Best, Dawn
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DianeC
Member in Phase 3
| Joined: | Sat Aug 20th, 2005 |
| Location: | New York, USA |
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Posted: Tue Feb 21st, 2006 00:31 |
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Hi Barb,
Having just a taste of what a herx is like makes me realize all the more what an amazing person you are
You are always there for others in spite of what you may be going through yourself with some pretty bad herxing
Hoping that your meds will kick in soon to allow your intolerable herxes to ease up You are so important to all of us and we feel bad when you are going through such a bad time
May you start to feel much better soon!
Best wishes!
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Aussie Barb
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Posted: Tue Feb 21st, 2006 01:15 |
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Thank you All ...  you are very kind..
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I have been asked what is a gut herx:
gut herx will vary from person to person.
for me.
I have had gut herx since the beginning of MP.
It is like having a hive of bees buzzing in (not biting), or pressure pushing on, the diaphragm / guts / abdominal cavity.
It is there most of the time with some discomfort, even while sitting, and can rise to quite near intolerable sometimes, which of course affects me all over. >> feeling like a punch in the guts. winded.
I manage it with the meds. I take herx manage meds within the guidelines all day.
Body herx/aura: as defined by me, may be an extension of the effect of the gut herx. is felt while standing, specifically.
An all over inability to stay standing. best to sit.
Is a type of heavy gravity feeling. floaty in the head sometimes.
difficult to define. hence the name/ feeling of > aura.
Is almost always present to some degree. Sometimes worse than others depending on herx, and I am unaware of it till I do stand.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Wed Feb 22nd, 2006 00:53 |
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Wednesday February 22nd 11am / mino 50mg Q12H. / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/
3rd dose of 3 abx combo 28H.
mentally and emotionally mostly ok.
gut and body herx. waxes and wanes.
and using MP meds as listed above to hold herx to tolerable.
feet swollen.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Wed Feb 22nd, 2006 12:37 |
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Wednesday February 22nd 10.30pm / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/ mino 50mg Q12H 5pm /
4th dose of 3 abx combo req at 10.30pm 39H .
When it is time to take the Q12H mino, intolerable antbite cramps.
and
as much as I try to go 48H between doses of this combo, bone pain, head ache, and decreasing body function make it impossible to continue without taking the next dose -which relieves the symptoms.
sleep has been interrupted recently by
me feeling too hot. (not the weather)
esophageal herxing (like reflux)
overproduction of saliva. (other members also have had this)
just plain herx.
usually have to get up for a while till it settles, and then can go back to bed and get some sleep.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Thu Feb 23rd, 2006 01:18 |
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Thursday February 23rd 11.30am / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/ mino 50mg Q12H /
4th dose of 3 abx combo req at 10.30pm last night.
all meds used as above to hold herx to tolerable.
slept well after the new combo.
eyes continue blurred sticky etc.
feet continue swollen.
Dr Marshall wrote re saliva production:
The overproduction of saliva might well be 'normal' production of saliva, something you have probably not experienced for many years, maybe your whole life. Th1 disease very quickly messes up the salivary glands, and shuts down the saliva being secreted. <<
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Thu Feb 23rd, 2006 20:28 |
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Friday February 24th 6.30am / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/ mino 50mg Q12H /
5th dose of 3 abx combo 7.30am today.
some high herxes, all managed with meds as above.
I/we went out to the shops briefly again last night to get a couple of things ....me in the wheelchair.
it is nice to see the world some, but it will be nicer when I feel better mentally physically emotionally and can be independent.
I have had a little better spot between herxes this morning.. - than I have done for a while.
mucus coughy chokey.
swallowing can be sensitive at times (I always forget to report).
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
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Posted: Sat Feb 25th, 2006 09:43 |
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Saturday February 25th 7.30pm / Benicar 40mg Q4 - 6H, day and night / Quercetin TID / Probiotics TID/ mino 50mg Q12H /
5th dose of 3 abx combo yesterday.
some high herxes, all managed with meds as above.
gut diaphragm herx
cough some.
eyes same, black rings
feet swollen
R foot on the edge of crampy.
R hand painful in some positions.
nausea at times.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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