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Aunt Diana
Support Team
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Posted: Mon Jun 15th, 2009 20:39 |
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Jan,
I have done that exact thing numbers of times. On my little electronic clock it is easy to hold the wrong button down and change the time instead of the next alarm. It is difficult enough trying to wake up, down the pills, reset the alarm and fall back asleep,,,but when you wake up and you know something's wrong and it says it's 1pm and it is obviously in the middle of the night...and you have to go out into the kitchen to find out what time it is, stumble back, try to figure it out again, all this half asleep and brain fogged to boot.....
It usually gives me a little chuckle by the time I'm over with it all.
There are times the urge to nap just takes over for me....no matter what time it is. I can't resist it...it will happen even if I'm sitting in a chair.
Have you tried taking 25mg mino, Jan? When I took my break I found that helped to modulate things...frequently took it once or even twice a day. It does take a while for the zith to clear, but the palliative mino helped me.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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JanEE
Member
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Posted: Mon Jun 15th, 2009 22:44 |
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Diana, you're right---it is funny once you've recovered from the shock. I've hit the wrong button on the clock before, but it's usually during the daytime, so it's easier to cope with, being wide awake. It's sort of the same feeling you would have of waking up and not knowing what day it is, and not seeming to be able to figure it out right away.
I've never had to palliate with an antibiotic before so didn't think of it. My first two phases were pretty straightforward, and I thought I was coming down the homestretch, so suddenly being hit with all this pain and discomfort is kind of a shock. I switched to taking demeclocycline almost since the beginning, instead of mino. Would that work the same way as mino?
I've been reading Aussie Barbs posts and wonder if Benicar isn't not working that way for me too. Taking more doesn't seem to help, but sometimes SL does. I think I'll wait until I'm fairly sure the zith is out of my system first and then if I'm still feeling too much IP I'll try the mino/deme---and then if that doesn't work I'll try cutting back on the frequency of Benicar. Of course I'll discuss it all with my doc this week at my appointment, but it's good to know other's opinions on how it worked for them. It definitely helps to make up one's mind.
When I stopped my antibiotics I decided that on my own, because I'd just had enough IP for a while and thought stopping (I reduced the dosages first) would help. I thought it was helping at first, but it just keeps going back and forth, and I need to find a way to control it better. Otherwise I can't make any plans at all.
About napping---with me there is a difference between being tired and that very strong need to sleep. I always refer to those as nap attacks, and there's no way I can put those off. There is no question at all in my mind that I need to quit what I'm doing and take to my bed---shades down (in the beginning they were blacked out, of course), lights out. I always kind of liked those naps. They felt so extra-rejuvenating somehow. Even if I'm watching a movie when the urge hits, I have to stop the movie and go to bed.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Jun 16th, 2009 00:18 |
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Jan,
Cut back the antibiotics to zero before you but back the Benicar. See the new Phase 1 guidance...
I find that electronic kitchen timers are the best way for a Th1 brain to deal with alarms. Just set the number of hours and wait for the beeping...
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JanEE
Member
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Posted: Tue Jun 16th, 2009 01:42 |
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Trevor,
My last dose of antibiotics was on May 29. I've read that it takes 40+ days for zith to leave one's system, so am trying to wait that out before taking a next step. I've read the new Phase 1 doc a couple times, but will read it again, as I know one can overlook some very obvious things.
I usually do well with my alarm clock, which sounds like a school alarm when it goes off and can be heard all over the house (guests cover their ears). It's just that sometimes I get so I don't hear it anymore, even though it's almost enough to wake the dead, because I'm so used to it. Either that or, in my sleepy condition, I hit the wrong button and change the time instead of advancing the hour, as I did last night, which seems to have discombobulated my entire day.
Thanks,
Jan
____________________
CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Pipistrelle
Member
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Posted: Tue Jun 16th, 2009 18:08 |
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I too got very confused with re-setting an alarm at night, , so now I have two travel vibrating alarms (Shake-Awake old and new models) which go under my pillow - different designs so I know which is which. One is set for during the night and the other for getting-up time. This gets round my high tone hearing loss, there is also no noise to disturb my lodger sleeping elsewhere in the house, and I've never slept through them  .
Major grump when I forget to switch off the getting-up one the night before non-work days  !
Morag
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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eClaire
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Posted: Tue Jun 16th, 2009 18:32 |
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I use a fabulous pill timer during the day that also holds the pills. All I have to do is flip the switches. It doesn't cover midnight to 6am however. But that ends up being a good thing cause all I have to do is flip the switch on my alarm before bed. With the alarm being a different ring than the pill timer, it is less likely I'd sleep through it. As loud as the pilll timer is, and it is very loud, I have done that a couple of times...or switched it off in my sleep...but the regular alarm is too difficult to switch off without waking up enough to take my benicar.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Juanita
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Posted: Thu Jun 18th, 2009 21:30 |
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I have a wonderful pill timer also. I use an electric kitchen timer that runs two windows at the same time so I can set for two doses. But it's happened a few times that the beeper would alarm and I'd sleep through it, 12 inches away.
Thankfully, it's loud enough that it wakes up family members who then get up and shake me to watch me take my pill. I've been known to mumble, roll over without taking my benicar because I'm still sleeping. So now they stand to see me do it.
The shame of disturbing their sleep is very helpful in keeping my hyper-vigilant to the sound of the timer.
I also now set my mind before bed in my meditation time, telling myself what time I must wake up for my next pill. That works pretty well, though not well enough I can be trusted with it. 
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Deb Grabetz
Support Team
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Posted: Fri Jun 19th, 2009 13:11 |
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I HAVE THE NUMBERS 10-4-10-4 WRITTEN ON MY FRIDGE!!! LOL...MY BODY WAKES ME UP AT 4 TO TAKE THE A.M. DOSE, NO KIDDING.
MY NUMBERS HAVE NOW CHANGED TO 10-2-6-10-2-6!!! LET'S SEE WHAT MY BODY THINKS ABOUT THAT 2 AM DOSING!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Joyful
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Posted: Fri Jun 19th, 2009 18:12 |
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Deb, I tried moving my 4am dose and it just didn't work. 
I'm taking them 12-4-8-12-4-8 and so far it's working.
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Sarah Jane
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Posted: Fri Jun 19th, 2009 18:46 |
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Grump: I just started taking Benicar sublingually for the first time since beginning the MP (I'm in the middle of an incredibly intense pain IP that's not responding to all the usual methods, so I'm trying other methods, including quercetin, and starting today Benicar sublingually and orally q3h) and it tastes awful.
My mother and sister had given it a try early on in our journey and both just about wretched, so I've never bothered with it- haven't felt I needed to until now. It's not the worst thing I've ever put in my mouth (those who have ever tried C in yogurt or jam know what I mean  ), but it is nasty.
I am to the point where if it helps, I'll do it - no argument there. But it's been 2 hours since I took my first under the tongue 20mg and I can still taste it in my mouth. *gag*
Since I now need a timer for every 3 hours, my dad is out checking all the stores in town for one, and so far everyone is sold out! Oy vey. I have an alarm I can use, but it does require setting the actual time for the alarm to go off, rather than just setting 3 hours and hitting start. Jeez, I wonder if brain fog might ever mess that up. 
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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JanEE
Member
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Posted: Fri Jun 19th, 2009 19:15 |
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Hi Sarah Jane,
I guess I'm lucky that I don't mind the taste of Benicar. I posted that once in response to Barney, and she told me that a lot of people don't like the taste and some have resorted to sucking on a mint with, or after, the Benicar.
I've even fallen asleep with a half of a Benicar under my tongue and wakened later to find it still sitting there waiting to dissolve. I never dreamed it would make some people actually wretch from the taste. Amazing how different we all are, and yet so alike.
Good luck in finding your alarm.
Jan
____________________
CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Sarah Jane
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Posted: Fri Jun 19th, 2009 20:25 |
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Jan, you are indeed lucky to not mind the flavour of Benicar! I had heard about mints or a bit of chocolate, I just didn't want to ruin mints and chocolate forever, lol. I did that once when I was trying drinking food grade hydrogen peroxide years ago. I would suck it down, then follow it with a piece of fruity gum. To this day, even the smell of that gum makes me nauseated.
Maybe I just need to build up my tolerance and then I won't mind the Benicar flavour either. *crosses fingers* At the moment, I'm working a mantra, "It's just temporary, and it's worth it... just a few more minutes... if it helps the pain then it's all worth it..."
I was able to eat lunch right after my last sublingual Benicar dose, so at least the taste didn't persist like last time. I have less than an hour now until the next one, though, so...... yay. LOL
Thanks for the alarm well-wishes! Dad's going to try one last hardware store on his way home from work this afternoon.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Joyful
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Posted: Fri Jun 19th, 2009 21:40 |
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Idea #1: don't use the lavender to clear the taste of Benicar! (just trying for a tie-in for this post )
Idea #2: don't do this:
Fresh and fragrant laundry can be achieved chemical free with easy to make lavender dryer bags. Using lavender buds gives the benefit of a natural moth repellent, sleep aid and a natural antibacterial.
Our yard seems to be the perfect land for lavender. Bushes spring up on their own and sprawl up to 6 feet across without even checking in to see where we wanted them to grow.
My husband is horribly allergic and is very brave to go out and trim them. He was sneezing the other day and then realized he'd accidentally used the 'guest' lavender scented body wash in the shower. 
It's a potent agent:
It also contains ursolic acid, which is not only antibacterial, but also active against lipid oxidation and inhibits elastase – which results in inflammatory processes as well as tissue degradation such as psoriasis and eczemas. ~ therapeutic uses
On the other hand, I have used lavender oil (pre-MP) to soothe my frazzled self.
I wonder if the range of responses have to do with different sets of bugs or how our bodies have come to be in our coping with disease?
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Sarah Jane
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Posted: Sat Jun 20th, 2009 17:24 |
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LOL, Joyful! I definitely won't be reaching for any lavender oil to mask the bitter Benicar.
Lavender is beautiful to look at (I was just looking at some online art photos of lavender yesterday, though I can't remember why....), so it's too bad that your husband is so sensitive you need to remove it all from your yard. If only they could invent a species that looked the same but had no scent.
I found two boxes of candy canes left over from Christmas (well, one and a half) so I've been trying a small piece with my sublingual Benicar (about the same size as the half tablet, though it melts slower, so I could go smaller - candy canes, however, seem to break into whatever size they please...naughty things). It helps a bit, but it's more like eating a bitter mint than sucking on a candy cane.
Another thing I tried was keeping a small glass of orange juice on hand and drinking a sip every time the bitterness of the Benicar comes up from under my tongue to plague my taste buds. That works quite well, and so far I'm not ruined for either candy canes or orange juice, lol.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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eClaire
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Posted: Sat Jun 20th, 2009 17:34 |
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| Perhaps if you keep switching up what you pair with Benicar Sarah Jane, you will be able to avoid coming to dislike any one food or liquid. (Of course, coming to hate candy wouldn't be all that bad.) Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Sarah Jane
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Posted: Sat Jun 20th, 2009 17:51 |
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A very good suggestion to keep switching things up! I will definitely try that. Thank you, Claire.
I wonder if I could ever come to hate candy.... although, I already don't like Jelly Bellies (whoever thought that all those weird flavours would be appealing must be off their rocker - really not a good idea to combine two when you've no idea what flavours they are, lol), and I hate those gummy candies that get stuck in your teeth. Plus, lime and lemon candies have never had much appeal to me..... it could be a slippery slope....
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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thelymelight
Member
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Posted: Sat Jun 20th, 2009 19:16 |
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Hello Sarah Jane,
Since you are in Canada, you may want to buy some Olmesartan in 20mg capsules, compounded with Avicel filler, from Yetvart Paylan Pharmacy in Montreal..
I have been using the 20mg thru the day and 40mg thru the nite since Feb '08 and I periodically take a 20mg capsule, open it up and dump the contents under my tongue for a sub-lingual affect......It doesn't taste bad at all...as avicel is, I believed derived from corn...and b/c it is all powder I find it dissolves rather quickly.. I don't know for sure if it works as a proper sublingual medication would, but I think it seems to help.
Yetvart Pharmacy is no longer allowed to compound up Olmesartan with lactose filler, because that would essentially be the same thing, as the new Olmetec on the market..but they can still compound up anything that is just slightly a bit different than the Olmetec..ie different filler or if one needs it time-released...You just need a script stating what you need specifically.
Hope this helps! Good Luck
~ Lisa
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Lyme, Babesia, 20 yrs w/neuro-psych-cognitive |125D/72pg|25D25ng(Nov05)Weaned hydrocortisone, Feb08-Feb09|Ph1Feb09/25D5ng|ModPh2Oct10/25D8ng|
Ph2Nov10/125D18pg/125D3ng(Nov10)
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Sarah Jane
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Posted: Sun Jun 21st, 2009 18:41 |
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Hi, Lisa! Thank you for the info.
We've been getting 40mg time release Benicar from the Yetvart pharmacy for awhile now (and I don't find it works nearly as well as the Sankyo tablets- probably because time release is inferior, but to our knowledge all 40mg capsules from Yetvart are time release whether you want them to be or not- though that makes no sense to me). In our most recent order, we specified quite clearly that we would like half to be 20mg non-time release capsules, but when the box arrived everything was 40mg time release.
Perhaps we need our prescription to say 20mg non-time release, rather than just stating it on the fax? If so, our doc would definitely have no trouble writing a script saying so. And I would love to have on hand a different option for sublingual as the Sankyo tablets are bitter and do not dissolve very quickly at all.
The sublingual application (nasty as it tastes) definitely seems to help, though.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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thelymelight
Member
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Posted: Mon Jun 22nd, 2009 15:57 |
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Hi Sarah Jane,
No, you can easily get both 20 & 40mg in non-time release..Just get your Dr. to specify on the script 'No-time release'...but Yetvart can only compound up Olmesartan now if it uses a filler other than lactose, as that is what is in the brand name Olmetec..so essentially he would be making up the same thing that is already on the market and he cannot do that now....So if you are wanting some 20mg capsules to open up and use s/l , ask for "avicel filler" the pills cost about .85 each...
I periodically consult with a Dr. B, a well versed MP Dr. in Vancouver and I don't believe he uses the time release formula at all, unless it is required in some certain cases..
You say you are using the Sankyo brand of benicar...can you not use the new Olmetec from Schreing-Plough here in Canada?...they are 40mg tablets...you could try cutting it in half and crushing it to make a s/l tablet and see how that works and tastes....
I am in the process of switching over from the Olmesartan w/avicel filler, in both 20 & 40mg to trying the Olmetec...as it will work out cheaper in the end, by buying 40mg tablets and cutting them in half for my 20mg dosing thru out the day..
Lisa
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Lyme, Babesia, 20 yrs w/neuro-psych-cognitive |125D/72pg|25D25ng(Nov05)Weaned hydrocortisone, Feb08-Feb09|Ph1Feb09/25D5ng|ModPh2Oct10/25D8ng|
Ph2Nov10/125D18pg/125D3ng(Nov10)
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Sarah Jane
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Posted: Mon Jun 22nd, 2009 17:17 |
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Lisa, what a lovely wealth of knowledge you are! We will definitely have to get our doc to write out a new script. When we first started out with Yetvart it was made very clear to us that he would only do 40mg in time-release, but it sounds like that's changed recently with new regulations? Lovely. None of us is corn sensitive, so it doesn't matter to us at all if he uses a corn based filler.
We're getting our Sankyo tablets through (I believe) a Canadian company who orders them from Britain. We had customs troubles with one package a while ago, and now the company won't insure packages shipped to Canada. Thus, every time you pay them for X many pills, it's a gamble as to whether you get the package, and if you don't they aren't going to replace the pills or give you your money back. NOT an ideal solution!
We used to get our pills compounded by Glebe in Ontario, but they suddenly stopped selling them about a year ago. (They wouldn't explain why.)
If you don't mind sharing, where are you getting your Schreing-Plough Benicar from? We knew that Benicar now had a DIN number in Canada (which should make it easier to get one's hands on), we just didn't know what that meant for actually getting our hands on Benicar that wasn't from Yetvart or a foreign country.
I'll do some online researching for it...
And thank you again for all of your helpful info!
____________________
MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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