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Deedee
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Posted: Sat Jan 16th, 2010 17:34 |
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Rob, great news about your doctor being open. If she needs someone to talk to , PM and I will send you my doctors name. He is in Asheville. Our pulmonologists, cardiologists and family practice doctors expressed no concerns and the cardiologist gave both of us the green light on the benicar. The only person worried was the gynecologist because she thinks I should be taking Vitamin D. I don't believe she read the literature I sent to her. Ya' think?
My husband and I are both on the MP and have continued to work throughout. We were most light sensitive in the beginning. After 6-8 months there is little light sensitivity. Cover up and wear the NOIRs while driving. I also used the sunscreen with zinc for good measure. You can buy a generic brand at CVS that is right next to the neutrogena. I still wear the NOIRs in bright sunlight outside, but inside I do not. Some people find they have little light problems, so maybe your wife will be lucky.
I was really worried about my donkeys especially up here in the mountains as it got so cold it was below zero several nights. I gave them very warm water every night and made a midnight barn run with more warm water. Even gave them some oats on the coldest nights. They really seemed OK. No shivering or anything. In fact, sometimes they were standing outside the barn stall when the wind was howling and the temps were around zero!Last edited on Sat Jan 16th, 2010 17:36 by Deedee
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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cederstrand
Member
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Posted: Wed Jan 20th, 2010 22:50 |
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My wife began the Benicar portion of the MP 36 hours ago. So far, only a short lived headache she described as similar to that experiences after application of nitro. My questions on her behalf. (Think I know the answers):
1) What if she does not adequately protect all areas of skin while going outside?
2) Same question as above, but regarding eyes?
3) What is the time frame for her innate immune system to kick in?
4) She seems to think the description of typical immunopathology is the same as Benicars side effects???
I expect to be starting the Benicar mid-next week. Thanks for help answering my wife's questions. Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Deedee
Member
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Posted: Thu Jan 21st, 2010 03:03 |
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1) What if she does not adequately protect all areas of skin while going outside?
Covering up helps reduce the D levels (although diet seems to be the most contributory). Sun on the skin and in the eyes can cause some people "sun flares" which is different than IP in that there is no bacterial killing going on, just very unpleasant effects that are associated with rapidly adjusting hormones and sun exposure combined. Not everyone experiences this, but it is prudent to be prepared.
2) Same question as above, but regarding eyes? See #1.
3) What is the time frame for her innate immune system to kick in? The Vitamin D levels will have to come down. How quickly that comes down will depend on how careful she is with her diet and sun avoidance, how high her D levels are, and her own individual make-up. See the Vitamin D calculator which will help you understand the Vitamin D and therapeutic levels: http://mpkb.org/doku.php/home:tests:vitdinterpretation The avoidance of D in the diet, avoidance of sun exposure (especially sun-bathing) and Benicar will help pull the Vitamin D levels down. When D levels are too high, the innate immune system stops working.
4) She seems to think the description of typical immunopathology is the same as Benicars side effects??? What is typical IP? It is different for many people, so I am not sure which side effect you are referring to. Less than 3 percent of people taking Benciar experience side-effects with the most common being dizziness. Now, I ask you, is the "side effect" they are experiencing IP? Benicar, per manufacturer reports, is very well tolerated by most people. During Phase One I had dizziness but after tracking it for a while I found it was totally unrelated to my BP. It was IP.
I expect to be starting the Benicar mid-next week. Thanks for help answering my wife's questions. Rob
Good luck to both of you!
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Marysue
Moderator
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Posted: Thu Jan 21st, 2010 03:35 |
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Rob,
In order for us to best answer questions on your wife's behalf, please create a separate login for her as a member and add the required signature line. That way we'll have her posted symptoms, diagnosis, and Vit. D levels readily available (visible) where we can offer the best advice based on her unique information.
It's OK for you to login to hers and post her questions for her, but it will be much easier to follow her progress and yours if you each have your own "thread" and signature lines. 
Has she already had her 25-D level checked too?
This link has some information that may help her understand the stages of recovery and how the immune system is affected at each stage:
http://mpkb.org/doku.php/home:mp:stages
But, as Deedee mentioned, the most important thing that will affect immune system activation during the beginning of the MP is getting the 25-D levels down.
Also, here is a link about understanding the effects of Benicar:
http://mpkb.org/doku.php/home:protocol:olmesartan:safety#misunderstanding_side_effects
Marysue
P.S. We just had another hay delivery to restock after the two-week "deep freeze" and feeding double the usual amount of hay for our horses. The hay guy is pretty happy, since he's doubled his sales this month. 
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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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cederstrand
Member
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Posted: Thu Jan 21st, 2010 22:53 |
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NewsFlash, my wife talked me into started the Benicar this morning, so I just took pill #3. I was a bit surprised my BP dropped to 86/42. HR was 62, which was an increase from the 40's - 50's as of late. The wife assured me that as long as the mean is around 50, my kidneys and such are being transfused with blood and that I will be fine. I trust her, after all she has spent most of her life working in CCU, ICU, ER, and now LTAC. I feel lucky to have her these days. So far, so good.
Not much else to report on. A long day running errands and returned home just in time to set a hay bail out for the minis before dark. And yes, I continue to stay covered up outside (as I have been for some weeks now) and am back to wearing Noirs full time. Hope the bridge of my nose holds up.
Have a nice evening all. Rob
***Marysue, she will be having that blood test drawn next week. Hopefully my own results will have come back by then and I will be able to post that. And we can relate to the increased speed at which horses can consume hay when the weather turns cold. Horses are not for poor folks, but sure can keep you from ever becoming wealthy.LOL
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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cederstrand
Member
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Posted: Wed Jan 27th, 2010 04:31 |
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Update: So, closing in on my first week of Benicar, here are some interesting results:
ALL my swollen lymphnodes have shrunk. (glad I didn't get the MRI) I can take a full deep breath without coughing along with big yawns, which I couldn't do a week ago. With easier breathing has come a slight increase in energy. What really surprises me is the dark eye floaters, although entirely still there, have become much lighter in intensity, making them much less annoying. I'm still waiting for some negative side effects or some form of immunopathology to kick in. I know it's way to early, but thus far, I am most pleased.
Met the cardiologist today. He was not familiar with the MP. TurGet this, turns out he is a spokesman for Benicar. He took all the info from me to read and seemed interested. Next week brings wearing a 24 hour heart monitor, an ECG and stress test. Will be good to establish a starting point to compare back to a year or two from now. Feeling more optimistic about having a future than I did a week ago.
Still have a couple questions, but they are for another day. Tis' late here.
Cheers! Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Marysue
Moderator
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Posted: Wed Jan 27th, 2010 04:48 |
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Rob,
Congratulations! I'm glad to hear that you're enjoying being one of those who is feeling better initially on Benicar. This will give you some idea of what it will do for you throughout the MP. The immune activation will occur gradually over time, so this gives you some idea of the benefits without being overwhelmed by too much immune activation right away.
Just be aware that as the Benicar makes you feel better (and especially breathe easier), you'll be tempted to do more and sometimes that alone can trigger IPs. Just keep resting as needed and drink plenty of water.
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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cederstrand
Member
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Posted: Thu Jan 28th, 2010 20:27 |
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I read the following regarding diet on the MP:
[Grains (wheat, barley, rice, etc.) do not contain Vitamin D but may be supplemented with folic acid. Wholegrain products are preferable.]
Question: Do any of you eat Brown Rice or do you avoid this? I have been avoiding everything that isn't a fruit, veggie, nut or chicken/turkey. Wife brought home a bag of brown rice.  Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Deedee
Member
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Posted: Thu Jan 28th, 2010 20:48 |
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| Look at the ingredients. If it says "rice" and nothing else, that is good. Now look at the Vitamin list. If there is D on there, it is fortified. If not, good again. Look at the Vitamin A. Is it less than 6%? Probably no D then.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
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| Posts: | 601 |
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Posted: Fri Jan 29th, 2010 07:24 |
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Brown rice is fine. I enjoy it almost daily myself.
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cederstrand
Member
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Posted: Fri Jan 29th, 2010 23:32 |
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Very minor side effects the past couple of days:
Minor wrist aches. Some muscle fatigue, mostly through upper back, neck and shoulders. Minor headache, which I believe is from some light exposure on eyes. Light headed upon standing at times. Still, much preferable to how I felt before starting benicar, so no complaints what so ever.
Going to start some black beans & brown rice in the crock pot tonight. Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Marysue
Moderator
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Posted: Sat Jan 30th, 2010 04:43 |
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Rob,
Beans and rice are both hearty foods that can add variety and substance to your veggies and meats you mentioned. They are easy to find plain (or organic) without anything added including folic acid. We buy several varieties of rice and beans. When I started adding them in I was surprised how differently I reacted though to various types of beans, peas and rice. In the beginning I did better with Arboli (white) rice than brown rice but now I mostly eat brown.
I did fine with pinto and red beans but felt overwhelmed on adzuki beans, great northern beans, or split peas. Black beans fell somewhere in the middle. Anyway, experiment with different types and see. They're worth having in your diet.
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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B
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| Joined: | Fri Jan 29th, 2010 |
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| Posts: | 2 |
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Posted: Mon Feb 1st, 2010 00:26 |
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Do any of you take probiotics for your gut and if so, which?
Thanks! Rob
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eClaire
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| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 342 |
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Posted: Mon Feb 1st, 2010 13:38 |
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Rob,
Because you are open to moving slowly (being conservative in your approach to the MP), I thought I'd put in a word for staying on Benicar alone for a while. I suggest this because of your cardiac issues, lung issues, and light sensitivity. I think waking up the immune system slowly, to the extent that going slowly might do this, is what one wants to achieve. There's no guarantee that moving slowly will result in a slow wake up call and ensure manageable IP, but moving quickly has a track record of getting people into trouble with IP.
I started the MP back when the idea was to start the abx within 2 to 3 weeks. I had heart irregularity with my first abx and then experienced months and months of extremely uncomfortable heart IP. Also, I had light sensitivity for nearly 40 years prior to starting the MP, and though I developed some light sensitivity with the Benicar, it was not until I took the abx that light sensitivity hit me hard. Incredibly hard... to the point of total light blindness for three weeks after just a few days on the abx, and I was unable to go outside under any circumstances for the first three months on the abx. I wore 2% NoIRs indoors with a single 15 watt light and 4 watt night lights after the three weeks of light blindness. The good news is that I was able to go without NoIRs indoors after 22 months (except for watching television), including using my laptop. I am still using 30 watt bulbs in the lamps that are closest to me, but all the other lights have 60 watt bulbs in them.
Note what is said here about probiotics: http://mpkb.org/doku.php/home:othertreatments
Best to you, Claire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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cederstrand
Member
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Posted: Fri Feb 5th, 2010 04:37 |
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I received a note from my new Doc. She said all the lab tests were within normal limits except for total bilirubin which was slightly elevated at 1.6. She suggested a recheck with direct and indirect levels to determine the source. I'm ok with that.
What I get a kick out of is the fact I quit taking both BP and cholesterol drugs and fixed that much with diet alone, before starting benicar.
One down side I can see from the lab results is this means (from the docs perspective) the D test must have been higher than MPers are after. But this is very early in the game for me, so I know bringing it down will take time. I will call her office to ask for the # result of that test to post here. Remember, this is the doc I have insurance through so these tests are cheaper for me than going through my old doc who prescribed the MP drugs. Of course I still hope to talk the new doc into doing this, as office visits are way cheaper with her. (hope all that made sense...LOL)
Turned in the holter monitor and had the echo done yesterday. Will meet the cardiologist in 2 weeks for the results. No prediciton on those tests, as healing a heart problem will take a very long time.
Only other thing to report on is more frequent light-headedness when standing but this is easily controlled. Also brought back that feeling of constrictive breathing immediately after trying to persuade Cowmilla (mini zebu heifer) to go through a gate. I knew better than to try getting physical. Won't make that mistake again.
Very cold rain with nasty wind gusts. This is a hard night for the critters, especially the elder ones.
***Claire, thanks for the advise. Don't worry, I have no intention of rushing into the mino phase.
Rob
Last edited on Fri Feb 5th, 2010 05:28 by cederstrand
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Marysue
Moderator
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Posted: Fri Feb 5th, 2010 05:28 |
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"Cowmilla"--that is too funny. 
Yeah, don't push your luck!
BTW, Rob, when you get a chance, please update your signature line with "Benicar" and the date you started it. We are all in the habit of checking that before we post so we know where you are at and how long.
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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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cederstrand
Member
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Posted: Sun Feb 7th, 2010 06:40 |
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Running out of benicar well before the date I can refill it. Time to see the old doc and hope I can convince him to write another asap.
Not having any obvious IP or herxing. Wondering if my immune system is that far gone or if I will eventually start experiencing it?
Also wondering if my D levels are still too high and perhaps preventing this process to take place yet? (I will call the new doc's office Monday to ask for the D test results so I can post it here)
One other question, if benicar turns on the immune system, then why do cuts and scrapes seem to be taking longer to heal now?
My eyes actually seem a little less light sensative now. Not wearing Noirs as much when indoors at night. Still need them outside.
Still feeling good about benicar, considering how bad I felt prior to taking it.
Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 601 |
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Posted: Sun Feb 7th, 2010 06:54 |
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You asked:
"One other question, if benicar turns on the immune system, then why do cuts and scrapes seem to be taking longer to heal now?"
That's an interesting situation.
I'll look forward to any ideas that are given for this.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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cederstrand
Member
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Posted: Tue Feb 9th, 2010 02:14 |
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OK, seems something is happening internally. An increase in overall fatigue, most notably muscle aches through shoulders/neck/and especially in the jaw (upper jaw most of all). Chewing food thoroughly is becoming a chore. Feels like I've been working these muscle groups out with weights. This has been growing in intensity over the past few days but is now pretty constant.
Breathing is back to feeling much like it did before starting benicar. Also increasing is light headedness, to the point it hits much more often than not, sometimes stopping me in my tracks to regroup. Finished chores but had to go strait to bed and rest.
Other things include eyes doing some funny things (light changes, hard to describe). Joints are creaking a good bit, too. Pustials have returned on bridge of nose. Somewhat swollen neck lymphnodes and others are still present.
Curious, is there a pure "off the shelf" pure type of guaifenesin available, or is this something to get through a doctor? When exactly would it be usefull to try?
Any of this sound familiar? Thoughts? Rob ps: still hope to have my previous posts questions answered, too. Thanks!
Last edited on Tue Feb 9th, 2010 02:19 by cederstrand
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Deedee
Member
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Posted: Tue Feb 9th, 2010 02:17 |
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| I get my guaifenisen at CVS. You can get it at any drug store. Just mark sure there is nothing added, like an antihistamine. It is with the cough syrup.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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