hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
heatherkiss et al, i'm back on flagyl after more than a year of avoiding it because of peripheral neuropathy problems. am pulsing three days a week and also taking plaquinol, malarone & doxy. so far (and it's only been a week, I am achy in the arms and hands plus tired and fuzzy. nothing extreme yet.
when i took it in the past I felt sharper in days of taking it. could file again at work. could organize stuff that was sitting in piles.
I think I am feeling a little bit like a brighter bulb on the bush, but it's really too soon to tell.
i think it's the best for cognitive stx.
good luck
hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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HEATHERKISS
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posted
Hopeful,
That is soo nice to hear. I'd really love to grow some of my brain back!
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
thanks Heather - i'll try lowering dose for a few days til sickness passes. most abx seem to make me sick!
Posts: 47 | From SP | Registered: Oct 2005
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5dana8
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posted
Alot of head pressure & really emotional After a while it stopped working for me & now am on tinimax.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I'm on it as of this week...random muscle pains, tin/metallic-like headaches.
-------------------- Bill
**Question everything...it may save your life!!!** Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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hopeful123
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posted
i really spoke too soon. Wow! Can't walk without limping because my ankle hurts so much (old symptom), can't get enough sleep and FOGGY, FOGGY STONED feeling which is really interesting to try to get anything done at work.
this was after one three day pulse last week.
i am due to do another pulse today.
thank god i'm not working at anything really important. i just talk to people a lot and push paper around. i think i can do that....but the sleepiness is amazing.
thanks for letting me vent...
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
This time around Flagyl:
Tastes terrible Tired Dont sleep deep Level sleep here ------------ sleeping at this level 1.Iam here 2. 3. 4. 5.Deepest
Stomach hurts this time around.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
I had a burst of energy and enjoyed a brief period of mental clarity after New Years, then WHAM!!
I have severe joint pain everywhere today and the foggiest brain!! Glassy eyes, pale, sharp pain in my head, stiff neck, burning in arms and legs and my standard herxing insomnia.
My knuckles and fingers are so inflamed today I look like I have "man hands".
Oh yeah, very b***chy too. Poor hubby should have slept in the barn tonight.
And to think I ASKED my LLMD if flagyl would be "enough" alone and he prescribed a combo I have yet to add!
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
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posted
Doing great today! Have my special monthly friend.
Now going to PA for a christening.
Bye,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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posted
Hi IMA,
So sorry you are herxing........ feel better soon.
Hi Tree,
Hope you get some good sleep. I either take ambien or zanex to sleep. I take turns.
Well everyone I think the herxing on the flagyl 500 and doryx 100 has started. I'm burning. Oh my skin is burning.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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posted
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi Heather and all, Started Flagyl yesterday - only have to take it for two days each week pulsed with Ceftin the other five days. I really noticed that I had problems sleeping last night, more than usual, woke up feeling like I'd been hit by a truck, again more than usual. And strange sort of metallic taste in my mouth.
I also woke in the middle of the night with a sudden jump- sort of palpitations, a sudden thump in my chest. Lets hope it doesn't happen again tonight- I need some sleep!
Posts: 229 | From United Kingdom | Registered: Jul 2005
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HEATHERKISS
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posted
Hi Milly,
Yes sleep is definately an issue and I do have to use help. either xanax or ambien.
I like ambien better but can only use it about three days in row without getting a horrible headache.
Hope you get your beauty rest,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi Heather, Thanks for that, I got a better night sleep last night, which was a relief!
I haven't really noticed anything much else with the Flagyl but as I only have to take it for two days a week I wasn't expecting anything dynamic. I just hope that it will be enough to get these pesky bugs out of hiding!
Hope you're improving! mi mo ma
Posts: 229 | From United Kingdom | Registered: Jul 2005
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posted
Anyone know how long Flagyl stays in you system for? I'm only on it for two days a week (Sun Mon)and wondered if I might be allowed to have a glass of wine with my meal say, on the Thursday or Fri.
Posts: 229 | From United Kingdom | Registered: Jul 2005
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Pocono Lyme
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Member # 5939
posted
Milly
I'm on tini, the other cyst buster. I was told the minimum amount of time to be on a cyst buster when pulsing is three days.
Flagyl and Tini have the same warning with regards to alcohol. It states to avoid for three days following discontinuation of the drug.
Hope this helps. TreePatrol, next year no cyst busters for Penn State games. We'll have a beer, ah heck a couple, and a pizza, and dessert, a beer to wash that down, doughnuts, chocolate, peanut M&Ms, and did I tell you peanut M&Ms go good with beer. OK time to stop. I'm getting hungry or maybe it's thirsty.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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HEATHERKISS
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posted
Tree and Pocono,
I sooooooooooo hear you about the beer. And Milly a glass of wine sounds good. 3 days is what I read on my medicine insert.
Next year for Christmas and New Years I want to be drunk!
Today I'm tired and stressing. Have an ear ache.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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treepatrol
Honored Contributor (10K+ posts)
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posted
ahhhhhhhhhhhhhhh beer
I just thought I would tell you guys wife started aching tuesday right on cue then cold sore wed then thursday herxing ached all over her recently healed foot is piching and shoulders hurt and left knee swelled up headache and to top it off she got what women call there buddy too.
Me the deep acheing stopped I only hurt here and there not even bad compared to what Iam use to haha had headaces over the weekend thats it was tired alot sleeping better sofar. we are both on Pennicillin vk and flagyl a month now.
ps those two abx's were my idea to try the cillin is 4000mgs a day the flagyl is 750mgs hard regiment taking pills P= 6am 11am 4pm 9pm F= 6am 1:30pm and 9pm
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Heather,
How 'bout Christmas in July?
I've had the same reaction as Tree's wife pretty much. The shoulder pain and aches etc. even the "Buddy". Much less intense this month as compared to last month. Tho I'm on Tini, not Flagyl.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
I've decided not to risk having any alcohol, I want to give myself a fair crack at this.
I've been feeling soooo tired again and like treepatrol's wife, I've got a cold sore, so hopefully the fagyl that I took four days ago might be doing something...
Posts: 229 | From United Kingdom | Registered: Jul 2005
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treepatrol
Honored Contributor (10K+ posts)
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posted
Cold sore seems to be a running theme here when on Nitroimidazoles: Flagyl, Tinidazole & Others
Hummmmmmmmmmmmmmmmmmmmmmmmmm?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Hi Again, Interesting about the cold sores... when I was a kid I would get them really badly. I only seem to get them about once a year now. I wonder if there is some relation with herpes simplex to lyme.. and, or, they are affected by the strange affects that lyme has on our immune system. Be great if anyone knows anything about this.
Posts: 229 | From United Kingdom | Registered: Jul 2005
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HEATHERKISS
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posted
Oh man! I started to get a cold sore. I took the valtrex 3 times yesterday to keep it down.
My "buddy" is a very normal one. Believe it or not this a relief.
Slept 11 hours last nite. Glad it's the weekend.
I love you all,
[ 06. February 2006, 10:20 AM: Message edited by: HEATHERKISS ]
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Looks like I'm following in your footsteps, Heather. 5 months of yellow paint and Zith didn't work so now it's 500 mg of Flagyl twice a day, 400 mg of Ketek twice a day and 2.4 mu IM Bicillin LA. I guess the Flagyl goes after the Lyme cysts and the Babs.
My left eye aches, my head aches and the pain moves around my head throughout the day. I have Lyme-neck. I must look so silly constantly trying to stretch the ache out! My ear was ringing a little bit last night but I could only hear it when the pillow muffled the ambient sounds so I guess I'm lucky.
MiMoMa, I had that same heart thump just last night! Freaked me out so I lost another hour or so of sleep. I was astounded when I read your post.
And mooody. Sheesh. My husband just keeps hanging in there with me. On another topic, my husband just turned down a job that offered a $20K salary increase because the health insurance was only Kaiser or Blue Shield. All because LD isn't recognized! Grrr!
I just keep hoping I'm going to get better, well, well, actually. As a friend said recently, "By having hope, what do you lose?"
Be well, D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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henson2
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posted
Smiles wrote:
"It's normal to have flu-like symptoms but if you can't function normally then you should really stop the medication. Unforchunetly, I thought I could just "push" through it and ended up compromising my immune system. I have to wait until my Immune sys is strong before I can go back on the meds."
I would LOVE people's input on this!! I am not on flagyl but a different oral abx, but had reached the same kind of point of feeling like I needed to "push through" or back off. In the end it was too much and even my LLMD said to back off.
Is this the rhythm of this disease, then? You get really sick and back off for a bit? Do you really try not to let it get that bad before backing off?
I ask because I really thought I had to keep enduring the awful stuff in order to get better.
I should add that I had a fairly smooth linear improvement for a good while, until the Herxes started in the hugest way ever this year.
I guess it's really an impossible question to answer bec. we are all different, and we are being treated for different things (some of us have co-infections and some not) .... but I was just SO interested to read that maybe one should back off faster than I have been backing off.
Thanks for this great thread. It's very helpful even for those of us on a drug besides flagyl that seems to be getting at the nasty bugs in a very big way.
Warmest good wishes to you all!!
Posts: 1067 | From East Coast | Registered: Dec 2000
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
PS
Just to add that I know that none of us is a doctor, and neither am I. Just interested in how long people tend to let it go before backing off, and whether folks hear from their doctors to back off.
I was so relieved when mine told me that it was too much now. But then I wondered, OK, so how do I get better?
You keep running up at it one more time?
Thank you to all and warmest wishes for feeling better!
Posts: 1067 | From East Coast | Registered: Dec 2000
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posted
Hello again all! This is such a great thread - really supportive for all of us on Fagyl at the mo...
I'm back on mine for the next couple of days - I only started pulsing last week. To start off with I didn't think that anything was happening but over the last couple of days I've had a lot of my old symptoms returning.
I've had major 'lyme brain'fogginess & sharp head pains. More floaters in my eyes than usual. Moodyness / dissatisfaction with everything. All the joint pains & tiredness and a nasty pain in the right side of my stomach that I haven't had for ages! I'm hoping that it's working!
Posts: 229 | From United Kingdom | Registered: Jul 2005
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HEATHERKISS
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posted
Ditto with old pain. Both my flippin' knees hurt. That hasn't happened in a while.
And....... I do have new pain in the top of my shoulders. I've had the shoulder pain typically in my back blade and neck before.
Very irratable. i think that just goes hand in hand with pain.
And sleeping a whole lot.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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posted
Air hunger? My chest is tight....... It feels kinda laborious to breath.
[ 06. February 2006, 10:21 AM: Message edited by: HEATHERKISS ]
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sorry abut air hunger
Off flagyl for now couldnt sleep very well.Thats the first time that happened in all the times I used it maybe it was the combo with penn vk??
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I saw my LLMD for the first time yesterday, and he ordered IV rocephin, and 1500mg a day of flagyl. After reading everyones posts, I'm not sure I'm looking forward to it! I do realize that everyones reaction is different, but this still scares me.
I am to take one pill the first 3 days, 2 the next 3, and 3 from there on out. Any suggestions?
TIA, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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posted
Been on tetracycline 500 3x/d for about 14 days then added flagyl 500 3x/day. Ouch. Came down with a cold (which I never get) then big brain pains, ear pain, teeth pain, neck pain along with enlarged posterior neck lymph nodes. It's the 4th day of flagyl and so far, perhaps the pains are less.
Hope this all means it's killing ketes.
Posts: 211 | From NC | Registered: Dec 2005
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HEATHERKISS
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posted
Home again! Slight pain but nothing compared to what I'm used too. Headache.
Hope everyone is improving also.
I'm still sooooo tired.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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posted
Hi everyone,
Been workin' the past 2 days. Doing ok.
Today I'm taking NO PILLS! Nothing. No rx. No vitamins. No probiotics.
Nothing nothing nothing.
I might do the same tommorrow.
bye,
[ 06. February 2006, 10:21 AM: Message edited by: HEATHERKISS ]
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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posted
Well I had my 2 glorious pill free days! Now I'm back on the saddle. Ramped up by taking half my pills yesterday.
I'm probably screwing up by stopping and ramping so quickly.
Home today. Overslept. I'll work tommorrow. Still very tired.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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posted
Well I'm doing fine! I guess I'm on the 2 week upswing.
I'll be working as much as I can stand. $$$$$$$$$$$$$$$$$$$$$$ $$$$$$$$$$$$$$$$$$
I need money.
Hope all the other flagyl buddies are feeling smart and not in pain.
Love,
[ 06. February 2006, 10:22 AM: Message edited by: HEATHERKISS ]
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
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posted
Anything new? Doing ok? Still in pain? Smarter?
I'm going to work tommorrow. I want to make 3 days in a row.
I'm ok. Pain is minimal. My head is clearer.
How about you?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi Heather! Good to see that you're still hanging in there!
I'm just over halfway through my course of flagyl & Ceftin and I think that I am improving. I'm still having problems sleeping on the days that I take flagyl. No other problems with it.
I have had an improvement in my tiredness though and I've been feeling quite positive and cheerful which I have been surprised to find, given all the evidence of others being depressed while taking flagyl. Perhaps I'm just not taking the high doses that can cause depression.
Posts: 229 | From United Kingdom | Registered: Jul 2005
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Well, I get off work in an hour and at home will be a Rx for flagyl for me. I have 4 grams of tini left so I will flagyl it until my fasygyn arrives.
I have been hitting the niacin with tini/doxy/diflucan/artemesinin/samento and JEEBUS the herx's are grand sometimes. Drooling, balance (gone), and flu-ey feeling. I sleep fine thank God. Next day I get citrus in me I am usually a small notch better.
Hoping flagyl is not too mean.
quai
-------------------- "In spite of the ever increasing cost of living, it remains quite popular" S. Shackel Posts: 87 | From walla walla wa | Registered: Dec 2005
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WildCondor
Unregistered
posted
I'm on Flagyl 500 mg 3x/day and its evil! Its stirring up my Lyme something fierce. It starts with twitching, then arthritis, joint flares, and brain fog, then the fevers! AHHH!
On it for c.diff, not Lyme and its a beast to take, esp. the taste, I dont want to eat ANYTHING because it makes me so nauseous. Waaa. I am sure its doing good though, just hard to take.
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Boomerang
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posted
Hi all.........husband is on his 5th day of Flagyl and having a good response so far!
First day or two, his knees and elbows ached....same way he was on the Doxy. The Zith never did much for him, but make him feel bad. I guess it did it's thing though. Part of the protocol.
Anyway, the Flagyl seems to be working. He says his head feels better.......and his "thinking" and speech is doing better.
He itched like crazy Saturday night....all over his body.
He's going to slow his dose down tomorrow, cause he may be going into a herx. His face was very red tonight. Can always tell when he's going to herx, cause his face turns so red.
He also had a period of blurry vision this morning.....said it lasted a couple of hours. That's always worrisome, but it does mean things are happening.
So far, he's liking the Flagyl. The response has been great, and his brain fog has been so much better.
Good luck all!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Boomerang
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posted
Oh.......sorry.......just wanted to add. My husband started trying to describe a thing with his chest tonight. I didn't have a clue what he was talking about. Said it wasn't pain, or anything. Then said it was a breathing thing....that was weird.
I didn't even THINK of the "air hunger" thing.... I realize now that is probably what he was feeling.
Gotta read about that now. Sheesh......I'm bummed cause I didn't realize what he was talking about.
posted
My 12yo son is on day 2 of flagyl and is having stomach distress. He is also cold, then hot. The girls (10) have mentioned being achy but not much else.
Everyone is pretty tired and sleeps later than they use to. Youngest is the only one not taking flagyl . . . . yet.
Hubby is doing okay.
We now have schedules for everything.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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HEATHERKISS
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posted
Yes flagyl made me very tired. But can you believe I can't go to sleep unless I take a xanax.
Now waking up is kinda a bother but once I get going there's no stoping me.
Today was a pretty darn good day.
Just a few shocks thru my body and the weird pain in the vein thing.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Boomerang
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posted
Hubby still seems to be doing good. I worry about his flushed face some days. He has had some herxes, so I'm paranoid.
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![[Eek!]](eek.gif)
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![[cussing]](graemlins/cussing.gif)
Poor hubby should have slept in the barn tonight.
![[tsk]](graemlins/tsk.gif)
We'll have a beer, ah heck a couple, and a pizza, and dessert, a beer to wash that down, doughnuts, chocolate, peanut M&Ms, and did I tell you peanut M&Ms go good with beer.![[confused]](graemlins/confused.gif)
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![[loco]](graemlins/loco.gif)
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Glad it's the weekend.![[kiss]](graemlins/kissing.gif)
I love you all,![[Roll Eyes]](rolleyes.gif)
My ear was ringing a little bit last night but I could only hear it when the pillow muffled the ambient sounds so I guess I'm lucky.
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