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Marysue
Moderator
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Posted: Sat Apr 11th, 2009 21:05 |
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Getting ready to start!!!! I'm moving my posts here to post updates and ask questions.
Finally, after 7 months of struggling and getting no help locally, we made an 8-hour (round trip) trek to see an MP doc. What a relief to have a doctor look at my vitamin D tests and say, "Wow, you've got TH1 inflammation bad. Let's start getting you well again." He pulled out his prescription pad and started writing...Benicar, Mino, plus a few others to palliate symptoms.
The only doctor I found who was willing to do both D tests (D=30, 1,25-D=70) wrote me a script for 1000 units of Vit. D/day..... Not!!! All my other blood tests were normal. As for all my symptoms and severe sun/light sensitivity he said he was "just baffled" (even after I told me about the MP! Oh well, if it takes dealing with the 8 hour trip every 2-3 months, that's what we'll do. I'm tired of trying to educate other docs and not get the help I need.
So, here's my plan:
--get my prescriptions filled Monday to start building my Benicar "stockpile"
--see my cardiologist (he's also a DO) and pulmonary doc this week to get reestablished with them in case I have any IP emergencies while on the MP
--finish covering windows and skylights (yesterday my husband put UV block film over the high windows that had no curtains--what a relief--I must have been getting a lot of exposure from those)
--wait for NoIR glasses to arrive this week (I've been wearing double sunglasses, one is fitover, and they work fine even though my sensitivity has been severe, but I want to have the 1% when I start the Benicar)
I plan to start on Benicar within 7-10 days. I've had a lot of IP symptoms while restricting light and Vit. D. So, I'm concerned about having immediate IP with the Benicar. But, I know it's also Benicar that will help alleviate IP. I sure hope the balance between those two is in my favor!!
Of course, I'm excited....a little scared....resigned. I'm sure everyone on the MP has been through this. I've been sick long enough and want to get well. I've made my peace with the glasses and covering up. Frankly, I've gotten more done inside the house in the last 7 months than I have in years.
All the great info on the MP sites has been a life saver already. I feel very well prepared and grateful to have your support in the months/years ahead.
Cheers to all, lots more updates to come....
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Sallie Q
Member
| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
| Posts: | 267 |
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Posted: Sun Apr 12th, 2009 03:39 |
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Marysue
Not to worry you
But keep working to find that close by prescribing doctor
Once the meds start bringing your microbial problems out into the bloodstream any trips are best kept to under an hour, probably for 12 months or more after treatment begins.
Otherwise you would need to travel in a closely woven chador/burqa type garment as you see the most heavily garbed Islamic women wear. [my girlfriend seriously wants to help me get one, I’m not sure what DH will think]
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b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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alycia2
Member
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Posted: Sun Apr 12th, 2009 04:24 |
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hi marysue,
just wanted to tell you about a window covering i discovered..i got it int he auto department at walmart...it is a reusable static cling window covering..it comes in long roll and can be cut to fit...we took a trip to new mexico this winter and i used it to darken the car..it was wonderful...as we would change direction, i would just move the covering from window to window..it's inexpensive and really does help...good luck with getting started...you are going to start feeling better soon.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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Marysue
Moderator
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Posted: Sun Apr 12th, 2009 05:14 |
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Thanks for the tips, Sallie & Alicia!
I'm already concerned about the future trips to the MP doc. He wants to see me at 4-6 weeks after starting the MP and again about 6-8 weeks after that. I hope to eventually do some phone appointments for follow up so that I can cut out the car travel. In the meantime, I've built a "tent" in the back seat to keep covered--and we'll add that window film too! (I'll look at Walmart, it's probably cheaper than the stuff we ordered on the internet). All of that is in addition to wearing the clothes, hat, scarf, gloves, etc. Even if I weren't already a little OCD, trying to stop the 1,25-D production makes us all a little obsessive!! Really, I'm thinking it would be easier to trade the car in for a van with no windows in the back.
As for other local docs, I'm hoping that my cardiologist might eventually be willing to help since he's also an osteopath. We'll see...
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Barney
Moderator
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Posted: Sun Apr 12th, 2009 06:15 |
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Marysue,
Trevor says that sunlight is not near as bad a problem as our diet is...so be very careful what you eat. Have you read the FOODS TO AVOID list?
You will still need to coverup and have your Noirs to keep the sunlight at bay.
HAPPY EASTER!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Marysue
Moderator
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Posted: Sun Apr 12th, 2009 21:01 |
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Hi Barney--thanks for the input.
I think I'm OK on the foods to avoid. I still can't handle any of those foods even if I was tempted. When my symptoms got so severe last October, I couldn't even think of eating anything on the avoid list. Most of those foods I thought I was allergic to for years. Now I realize it was probably the vitamin D. My levels have probably been high for a looooong time. Anything with vitamin D or even small amounts of fat make me real sick.
Last Fall, I struggled to eat and had chronic weight loss for 3 months before I got it under control. I'm stable (for now) at 110 (I'm 5'5") but am real concerned about nausea after I start the MP. One bad bout of nausea or diarrhea for a couple of days could really set me back on the weight. All the foods I need to help put weight on are the very foods I struggle with. I eat a lot of rice (no folic acid), steamed veggies, and small amounts of lean meat. I can handle steamed fruits and oatmeal, but no nuts, oils, olives, or avocadoes. I hope eventually I can tolerate some of the healthy foods on the OK list. I could live the rest of my life without the foods on the avoid list! Last month I tried one spoon of plain yogurt and felt sick enough to avoid another bite. So for now, no dairy of any kind. I eat broccoli for my calcium, but doc wants me take a supplement. So, I'll be researching that.
As for nausea--I'd like to be prepared to get it under control quick so I don't get into trouble. I've read the info on nausea in the ABC pages, but I'm wondering what others have found works quickest (extra Benicar, antacids, phenergen?) I'm prepared to try extra Benicar first for any symptoms, including nausea.
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Aunt Diana
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| Joined: | Fri Oct 26th, 2007 |
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Posted: Mon Apr 13th, 2009 01:09 |
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| Pepcid AC or Xantac have both helped me during bouts with nausea.
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ABC of MP| MP Stories| Bacteriality| MP Search|
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cathwood
Member
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Posted: Tue Apr 14th, 2009 04:26 |
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Hello, Can you tell me what city you must drive to for a doctor to use the MP. I am also having problems finding someone. Thanks, Carol
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Sarc of lungs, fibrosing mediastinitis, fibromyalgia, CF, acute vertigo, migraines,hypothyroid
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Marysue
Moderator
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Posted: Tue Apr 14th, 2009 04:31 |
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The doc I went to is in south Florida (south of Fort Pierce) which is a long way from Charleston. If it was 4 hours north of me instead, that would have been a lot closer to you. Sorry. Hopefully they'll be able to get you one closer. If you haven't already, post a request for doc list on that forum. Good luck--I know how challenging it can be.
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Marysue
Moderator
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Posted: Tue Apr 14th, 2009 04:40 |
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Aunt Diana, thanks for the tips on dealing with nausea. I added those to my list so I can have some things on hand before I start the Benicar.
Update: I saw my cardiologist today and it went well. He was at least receptive and asked for copies of the MP research info. They did an EKG, Echo, and ordered a stress test for Friday morning. He wants that done before I start the Benicar so we have a baseline of tests pre-MP.
The echocardiogram showed "mild leakage" but was otherwise normal. He said that leakage is common and of no concern. He was far more concerned about my history of hypotension and taking Benicar. I plan to stay hydrated and check my BP often.
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Sallie Q
Member
| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
| Posts: | 267 |
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Posted: Tue Apr 14th, 2009 05:30 |
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hi Marysue
If you can, eat lots of nuts
Add to meals, snack on them,
I eat a lot of rice too but it will not put onr weight, a little olive oil added to veggies keeps my weight up.
Base lines are great, will provide extra information to the research side
Sound like you are getting off to a good start
Go girls 
____________________
b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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Marysue
Moderator
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Posted: Sat Apr 25th, 2009 07:30 |
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OK....my checklist is finally dwindling down to "Start Benicar"....Yikes!!! It's really time to start on the MP.
My NoIRs came today (I had double sunglasses and also a pair of Bolle wrap arounds). They do seem to make a difference but my eyes are still adjusting to them. I get a little "headachey" with them but hope I'll adjust.
More window film came in the mail yesterday along with getting some from Walmart. That auto film from Walmart is the darkest--great stuff! So, we've covered the last of the doors and windows--and blacked out the skylights!
I finished up with the cardiologist. My nuclear stress test was "normal" along with the Echo and EKG. My cardiologist is also an osteopath and was supportive, but cautious. I can only hope I don't need him but I wanted to have the tests done and get established as a patient in case I run into cardiac IPs.
I've been eating good and finally gaining a little weight. I'm up to 116 from my low of 109. I hope that continues.
It's been 12 days since I filled the prescriptions so I have 48 extra Benicar (40mg) tablets for my stockpile.
I have a calendar with stickers to track my progress, herx charts printed out, pill crusher, splitter, alarm--blah, blah....I practically have converted my office into an MP tracking, planning, herxing, job site!
OK, I admit I'm nervous. Isn't everyone? I think I've done everything possible to prepare...and then some, thanks to all the info and help here. I'd love to think of more things that have to happen before just starting the Benicar....but my thoroughly prepared list really has shrunk. I didn't realize that big "start Benicar" sticker on my calendar was going to feel like such a big deal.
OK, I'm over it already. So, I'll start the Benicar and keep forging ahead. I'll let you all know how it goes, if I have enough strength to type! Ha! Ha!
Marysue
P.S. Can I change the title of my post to "Marysue's updates" or questions or something? Or should I start new posts or what?
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Marysue
Moderator
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Posted: Wed Apr 29th, 2009 06:39 |
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Day 3 of Benicar only:
I feel much better on Benicar.....whew! What a relief for now. I have more energy during the day and am sleeping better at night. I feel like some switches are getting turned on that have been off for a long time! Mostly, though, I just feel better to have finally started the Benicar and get going on the MP.
The photosensitivity increased from the first dose, but nothing I haven't already experienced and it is not intolerable. Glad I have my glasses and the windows covered. I also had an immediate increase in my sense of smell and hearing. Doesn't sensitivity to light, sound, and chemicals/smells all go together?
During the fifth hour I notice I'm tired and start to sort of "zone out". Then I perk right up when it's time to take the next dose. It seems there is a clear difference between the 4-hour and 6-hour point in the Benicar cycle. When I need it, I won't have any problem taking a 4-hour dose--I think I'll look forward to it.
Also, no significant change in BP. So far, it's staying consistent at 85/60.
That's it for now...
Marysue
"posting from my new cave in too-sunny-Florida"
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Toni D
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| Joined: | Mon Oct 15th, 2007 |
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Posted: Thu Apr 30th, 2009 07:44 |
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Hello MarySue,
Welcome! One question: In your doc search could you not find one suitable in the Orlando area?
Fort Pierce is a long drive from Gainesville, but if planned right you can do it. Before I found a doc in my area I would travel to Boca. I would leave three or four-ish in the morning and arrive just in time for my 8:00 am appointment. That particular doc had an arrangement with an 'allergy-free/friendly' hotel over on A1A and we would book a room for the day and then leave for home shortly after sunset, thus, not travelling during daylight/sunlight hours. Just a suggestion to consider re the hotel, especially if you find yourself extremely/moderately light sensitive as you progress on the MP.
Also, you might want to check with your cardiologist re Benicar samples. Mine has been quite generous with samples and hopefully yours will be also.
Feel good and be blessed.
Last edited on Thu Apr 30th, 2009 07:46 by Toni D
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Barney
Moderator
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Posted: Thu Apr 30th, 2009 08:39 |
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Marysue,
Here is some homework for you..please watch the 2 videos and print out the new Phase 1 document since it has lots of new MP info and you can read and reread at your leisure.
The new, updated Phase 1, has links to all phases and stages of MP, there is lots of info that can still help you, here is a link:
[size=http://AutoimmunityResearch.org/phase1.pdf]
I will also, give you a link to the the Prague presentation that Trevor just got back from, lots of information to move on saying that the Benicar is more important than the abx.
During the recent Workshop on Clamydial Infection in Prague, Czech Republic, I gave an overview of the therapy which has become known as "The Marshall Protocol." An HD video of that presentation is available at:
[size=http://vimeo.com/4293599]
In Prague I also summarized the Science underlying that therapy. The HD video is at [size=http://vimeo.com/4307469]
This is a lot of wonderful information. Hope you enjoy it.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Marysue
Moderator
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Posted: Fri May 1st, 2009 06:05 |
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Thanks Toni and Barney!
The doc search was challenging--two docs within a 2-hour drive did not take insurance (including one in Orlando). One local doc was new to MP and did not want to take on any new MPers. Another local doc was willing to write the scripts but was not supportive. Anyway, I'm willing to manage the trips just to have a doc who is experienced with the MP and takes my insurance. Our car is now covered in dark window film and I travel "covered, smothered", etc....you know the drill. If needed, we'll try the hotel option.
I watched both Prague presentations this week--AWESOME!! And, my printed copy of the new Phase 1 document is literally dripping in yellow highlights. If I had left more parts UNmarked, it might be more relevant, but I thought everything was important so now it looks like I printed it on yellow neon paper!
All the info on Benicar has been really helpful. I just printed the "6-stages" chart on Benicar and the VDR that was mentioned in the Prague presentation. That's a great graphic!
Thanks again,
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Marysue
Moderator
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Posted: Fri May 1st, 2009 06:30 |
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OK--Day 5 on Benicar
Is it too early for me to try taking an extra Benicar? Probably not, but thought I'd ask.
By too early to try, I mean will it increase or affect this initial period of hormonal adjustment in any way?
During the first 3 days, I just felt real tired during the fifth hour of the Benicar cycle. But yesterday and today I started getting more symptoms during that 5th hour--hard to describe, but mostly I just feel real awful all over and I get some sharp pains that come and go. None of this is intolerable especially since I know I'm close to the next (6-hour) dose anyway.
Marysue
"feeling pretty good 5 out of every 6 hours..."
BTW, my Benicar alarm on my phone is the sound of crickets chirping--Nice! My husband thinks it should be the tune "You Are My Sunshine, my only sunshine!" How true is that?!
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Barney
Moderator
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Posted: Fri May 1st, 2009 13:09 |
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Marysue,
Yes, you can take extra Benicar. Benicar often initiates IPs right away.
Your DH has a great since of humor.
I am so glad that you printed out/highlighted your Phase 1 doc. I wish all MPers would follow your example. I printed out each phase as I continued thru MP and I cannot begin to tell you how many times I had to reread them, so you are very wise. I can see you going thru MP much easier than those who do not take the time to inform themselves.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Marysue
Moderator
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Posted: Fri May 1st, 2009 19:05 |
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Thanks Barney--this morning that "fifth hour" woke me up and I was pacing (restless) waiting for that next Benicar. So I will try extra. Even though the change has been gradual, it's persistent and increasing. I'll let you know how it goes.
I'd love to take credit for being so well-prepared for starting the MP. But, my thoroughness (bordering on obsessive) was born out of sheer panic. I somehow lived through all those nights with panic attacks, rapid heart rates, chest pain, slow breathing, etc.--but I don't want to do that again. Fear is a good thing--it tells us something needs to change and to pay attention. Perhaps those of us who have lived through the more severe symptoms of hypervitamin-D already know how bad it can get.
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Marysue
Moderator
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Posted: Tue May 5th, 2009 06:01 |
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Starting Day 10!! Time flies....
I'm feeling better and the IPs I was getting are not as strong today. In hindsight, my worse symptoms last Thurs/Fri were probably due to PMS. I was so distracted with getting started on the Benicar that I wasn't paying attention to where I was in my cycle. My symptoms have always been much worse during the week before my period and actually with the Benicar even those symptoms last week were not as bad as pre-MP. I only took an extra 20mg Benicar once and it did help. For now, I'm back to my 6hr schedule and doing fine.
My increased sensitivity to the light is manageable since I am inside all day. But the heat is harder on me than I expected. I normally make just one short trip outside (completely covered including face and hands) to feed the horses and have not had any major problems but the heat gets to me quicker now and we haven't even had our usual high humidity yet. So, I'm guessing that the next 4 months of summer will be the toughest. I do the rest of the outside chores after dark 8-10pm when I can wear a t-shirt and avoid the heat.
Tonight we watched a sitcom and I laughed the whole way through. I don't remember the last time in my life I really just laughed like that. Everyday I have more energy and more focus--maybe that's because I'm finally getting some good sleep. Thanks to Benicar, I think I'm getting back parts of myself I didn't know existed.
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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