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DNStog
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Posted: Wed Jun 8th, 2005 04:31 |
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Barb,
Happy you have some relief from herx although still rough on you. I know how the brain fog messes up dosing. 
Hugs,
Donna
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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: Thu Jun 9th, 2005 01:30 |
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Thank you Donna.
Thursday June 9th 1.30pm off abx day
I am *out of it* today.. sleeping resting. emotionally fragile. .
herx: sinus drainage, need to drink a lot of water, and nausea stomach. wet L ear. burning eyes esp L. Left pinky finger and down that side of my hand has pins and needles (constant). at times when lying down> hands arms go numb/ to sleep, and L hip cramp, legs ache.
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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 Jun 9th, 2005 21:52 |
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Friday June 10th 10am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #5
Yesterday was full on.. I am *sick* most, if not all of the time. I take Benicar Q4H prn. Today I started off more sludgey now less sludgey. must be killing milliongs.. (sic)
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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 Jun 11th, 2005 02:03 |
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Saturday June 11th 2pm: off abx day..
The day brightened yesterday.
Today: no particular physical herx. emotional herx difficult.
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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 Jun 11th, 2005 19:00 |
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Sunday June 12th 7 am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #6
I settled the emotional herx by telling myself it was only herx.. (ie not any real issue) and with Q4H Benicar and rest.. I became dead tired and dead slow.. slept 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: Sun Jun 12th, 2005 18:19 |
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Question by private message: re from my progress report " have the lack of taste also distorted taste .. along with esophageal herxing.. is a feeling of reflux, and also, when swallowing it hurts all the way down, and a bubble of air is swallowed at the same time as drinking water."
Barb....."do you still have esophageal herxing? Is it gone? better? worse? How do you know it's a herx? It must be uncomfortable."
Yes I do still have it sometimes although not as badly as I did have for some time. I havent had the air bubble recently. I can also tell that I have it now when my cup of tea burns going down.. and yes it is uncomfortable. but it is all healing..
I know it is a herx because it is irregular and is controlled by the MP meds or lack of.. and when I had a break at some point, my taste returned.. taste is not right now. it is just so so..
I hope this helps.. 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: Sun Jun 12th, 2005 18:54 |
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Monday June 13th 6.30am: off abx day
I had a lighter day yesterday so it may be coming to increasing time.. I will have to assess how today is first though..
hands and feet were aching thru the night.
just for interest.. For quite a while now I have noticed that when I have a shower my fingers and toes burn under the hot water as if they are cold and they aren't. I am thinking this will heal with time..
I had a dream last night which I saw as symbolic of my MP Journey .. I was in the middle of nowhere, and even the 1 local resident/s couldnt tell me / were sort of mute about where we were / which way to go to get 'home'. Some of the time I had a travelling companion. and I went and went, around fully paved and wriggly curves and up and down slopes, and all thru this huge, miles long empty house, which had a picture denoting foreign soldiers habitation. sometimes see people I knew, which was a comfort to me, but still not knowing if I was 'getting there'..and then I came to a small town and was looking for signs to see the name of it and couldnt find, and the *important man* turned away and wouldnt say the name. I met these men there whose name was all Ungst.. (!) They said I had a strong handshake, and 1 of them in particular befriended me.. but I had to get on my way.. he gave me a gift. symbolic again. As I left there, there was a huge jampacked herd of cattle.. and 1 dead that I could see between these 2 towering walls of rock... these I took to be the bacteria that would not be able to continue surviving in those conditions..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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patrickburke
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Posted: Sun Jun 12th, 2005 21:16 |
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keep going Barb! It's got to be hurting the CWDB more than it is you. If thats any consolation 
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Sarcoidosis/lungs; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; still covered since 6/04; Noirs ended 6/07; Minimal light avoidance.
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ShrnHml
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Posted: Mon Jun 13th, 2005 01:38 |
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Barb......what an incredible dream!
I'm amazed that you remember so much of it. Is the name "Ungst" a stand-in for "angst"?
You seem to be suffering more than most. I am especially aware of that because I know you have had CFS for 25+ years.........as I have had. It makes me wonder if having the disease for so long makes the herx worse. What do you think?
Sending empathetic thoughts your way......................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: Mon Jun 13th, 2005 02:36 |
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Dear Sharon,
Thank you... that is what I believe the Ungst means... it is quite incredible really..
I am not sure that my herx is worse.. but the inflammatory load seems to be high that is for sure.. as Dr Marshall says " these are deadly diseases". We have been the walking dead.. negotiating a bit here and a bit there by doing all we could to hang in.. until the MP has come along..
since I have recommenced after the break, there is a difference..
The herx has been tough recently, but it is tolerable within my circumstances of being at home close to a bed and being cared for and with no expectations of having to be physically or emotionally present to others...
Now, I have noticed a pattern thru the number of doses... of the herx hitting hard, then the physical herx dropping off, and the heavy emotional herx being left, needing Benicar Q4H, and then another 48H of deep general malaise.... and then ready for an increase.. and then back around again..
I could stay in the holding pattern at the deep general malaise, which isnt so crash hot anyway, if I wanted to have a rest.... but like everyone else I am keen to be in an active phase, keen to knock'emdown...
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 Jun 13th, 2005 19:04 |
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Tuesday June 14th 7 am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #7
I had been thinking I was close to increasing but yesterday was tough enough mentally without adding to it ( I even ignored the phone and the front door x 1 each) and I have been awake thru the night with aching legs and gut/nausea/esophageal herx (reflux feeling and air bubble(!), took Benicar @ 4H.. and then this morning as I took my abx the thought of increasing never occurred to me.. so that was that...
skin herxing continues with itchy scalp and oily skin.
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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 Jun 14th, 2005 02:21 |
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| in 26 days, on July 10th MP.com site will be 1 year. http://www.timeanddate.com/
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DNStog
Member Advocate
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Posted: Tue Jun 14th, 2005 06:57 |
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Barb,
I had itchy scalp for a while and found Nizoral shampoo to be an instant relief. Also found itchy skin sarc lesions tamed with 2%K cream.
Hope to see you cruise for a while without the bumpy waves.
Hug, Hug
Donna
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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: Tue Jun 14th, 2005 18:42 |
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Wednesday June 15th 6.45am. off abx day
Thank you Donna for your support and suggestions..
Dizzyness on standing as the abx begins to rev up it's effect towards nighttime.. Herxing thru the night is more pronounced recently. aching arms shoulders, hips legs and lung and gut inflammation / aura feeling of herx. Full body is involved, mental emotional physically, so am resting and taking care..
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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 Jun 15th, 2005 19:47 |
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Thursday June 16th 8 am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #8
still enough herxing to stay on this dose.. Quercetin helps, and I take the Benicar Q6H with Q4H prn for extra mental emotional or coughing.... .. and keeping to QOD abx.
my eyes continue to be blurred from herx.. can see the computer but not smaller things.. not even with my glasses on and NoIRs off..
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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 Jun 17th, 2005 04:02 |
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Friday June 17th 4pm. off abx day
Herxing thru the night again... wakeful till it settled.. sensations thru head and body..
sludgey tired day. the herx at this level is settling.. I could taste a little bit better today.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Delray
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Posted: Fri Jun 17th, 2005 13:02 |
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The withdrawal from society happens because one's brain, hearing, eyes, nervous system and body cannot take the stimulation of noise, and others' movement and energy let alone the response needed from oneself.
One feels on a knife edge, knowing that any extra expenditure of energy will result in even more unbearable physical and mental torture. Of course depression is a natural result of the pain and isolation
I found this statement to be true to how I feel, but have never been able to say it so simply and to the point. It was a copy and paste, and one I will keep to express to those who don't understand.
With hugs to you,
Delray
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CFS/25 YEARS, FMS/4 YEARS, LYME DX 6/04 BOWEN TEST, POSITIVE FOR Q-RIBB 1:32,ISAC, HHV6,EBV,TMJ,OSTEOPENIA,LOW BP,CO-INFECTIONS,HEADACHES, VERY LOW HORMONE TESTS RESULTS.
SONORA QUEST LABS 9/3/04 VITD1,25-59 VITD,25-30
STARTED MARSHALL PROTOCOL ON 10-0
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Aussie Barb
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Posted: Fri Jun 17th, 2005 19:16 |
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Saturday June 18th 7 am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #9
Thank you Delray.. you may be interested in other Members experiences in this Topic.
............
My herxing is less but still requiring Q4H Benicar not often but prn, and still waking me thru the night last night. so, taking same dose today.
All is well. I am ok with one moment, one day, at a time... thank you all..
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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 Jun 18th, 2005 21:15 |
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Sunday June 19th 9am. off abx day
Herx disturbed sleep early in the night. gut. I will list symptoms not because they are bad but as they may be helpful for others..
ears are usually wet but are now dry and feel plugged and R ear was sore to lie on at one point last night..
L eye burns a lot. the feeling goes down into left nostril. I cant see as well with the 10% NoIRs on (inside of course) so I may try the 40% for a while for other than computer...
esophageal herxing with reflux feeling and airphagea..
stuffy nose.
L upper teeth troubling.
legs and arms in particular are sensitive just under the skin.. can feel it in my legs when walking.. I am sensitive to touch all the time, but this is more sensitive now..
toes ache.
antbite cramps and muscle 'grabs / 'shifts / catches' come and go.. I can be jumping around in bed trying to get them back in place..
there has been more Memory herxing too.. sudden flashbacks to things.
the emotional herx usually comes on later in the day as I need to go to bed..
all is tolerable with meds and management.
Some Family / friends say, "you must be bored." (! I have to smile ! ) "how long will this take.." "surely you MUST want to get out" .... etcc..."
re the question of exercise etc.. Doing MP is all I can possibly manage at this time.. I will let you know when I get to the point of being able to do more..
I am so happy to be doing MP... especially when I see the desperation on the other Boards.. we have spent thousands of $$ and all of our lives and so much effort chasing for help.. and here it is... Thank you to all for wonderful support..
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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 Jun 19th, 2005 16:58 |
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Monday June 20th 5 am. today abx combo 75mg mino + 1/2 2nd abx @ 48H #10!
another dose at same level... no need to push me too hard..
herxy wakeful night. recently both feet are aching a lot, feel to be 'drawing... and, separately, there is inflammation on old op sites on both big toes.. no pain involved.. must be herx also... strange things happen.. fingers ache a little too..
esophageal still..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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