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EMarie
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Posted: Thu Nov 19th, 2009 07:05 |
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I have been slow on starting the MP. Why? I guess fear of the herxing stuff, etc. However, the thought of this disease killing me is far more scarier.
I have been taking Benicar 40mg every 6 hours for more than 6 months. About a week ago I got very ill with what the doc thought was the flu. Long story short, it is my Sarcoidosis and it is now gone secondary into my neck tissues. I have this swollen thing on the side of it.
SO, that was it for me. I started 25 mg of Mino yesterday. Not sleeping too well tonight. I keep waking up every 2 hours and I am dizzy. I also feel like I am about to have another lung bout iwth congestion. I am hoping this is a herx?
I have been on so much Levaquin as of late, I really do not want to take any more.
My husband is picking me up a good probiotic.
Funny taste in my mouth as well.
Is dizziness part of herxing? UGH I hate this feeling. I took another Benicar to help with the herxing. Think I am going to keep it going every 4 hours
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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EMarie
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Posted: Thu Nov 19th, 2009 07:32 |
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I guess I should also post all the things that have been going on, so I have something to look back at when I am progressing to see how much has changed for the better!
Sarcoidosis in lungs and now neck tissues
Numbing in hands on and off. Worse in the morning and especially right now while typing. I can't feel my fingers.
Strange sensation in head. Almost comparable to when you stand up too quickly.
Dry cough most of the time. Every once in a while I get something a bit productive
SHORT of breath. Claustrophobic to say the least. Needing air has woken me up out of a sound sleep.
Anxiety, but only when I am experiencing weird crap.
Psoriasis. Mainly on head and ears and no where else.
Sinus issues on and off for 3 years
Light sensitivity.
Problems with gums and HORRIBLE taste in mouth. (metallic?)
I have also for the past month had pain in my neck on left side (same side as the swelling) that radiates down my arm. I thought it was a pinched nerve, but now I do not think so.
Also, I get a strange sensation in my ears. A kind of ringing and plugging sensation.
This is all I can think of at the moment.
I am going to try and sleep again Had some anxiety due to waking up and being dizzy.
Last edited on Thu Nov 19th, 2009 07:41 by EMarie
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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EMarie
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Posted: Thu Nov 19th, 2009 15:47 |
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Dizziness is gone. Coughing a lot today, and at times it is productive.
Overall, not feeling too bad.
Seem to have more energy today than I have had for the past 6 months. Using this opportunity to get much needed cleaning done in the house, though I do not plan on overdoing it!
Have all 3 Noirs as well. I forgot to state that in my other posts. Light sensitivity is really not too bad. The only time it seems to bother me is when I am on the computer, so I turned down the contrast and brightness and that works like a charm.
So, tomorrow morning at 8 am, I will take my 2nd dose of Mino at 25 mg, doing the every 48 hour dosing.
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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Cynthia Schnitz
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Posted: Thu Nov 19th, 2009 17:31 |
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| I think it is proper for you to say you have been on the MP for 6 months if you have been taking Beni Q6h for all that time. Have you or your doctor considered that what is happening in your neck is not a progression of your Sarcoidosis, but IP? Certainly the host of other symptoms you relate sound like IP. It might be of value to determine which of those symptoms were pre-MP, and which started after you began the Beni Q6h. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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EMarie
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Posted: Fri Nov 20th, 2009 10:36 |
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Hi
No it is definitely my Sarcoidosis that has gone secondary. I had that lump before I started the Benicar but ignored it since it was a soft mass. The pain started not that long ago and I am guessing it is pressing on a nerve or something.
Took my 25 mg of Mino this morning. Pain in the butt trying to split it up and put it back in the capsule, so I just put the powder in my mouth and drink a lot of water. Yuck.
FOr over a year now I have also experienced weird twitching throughout my body in the muscles. Anyone know what that is caused from?
I have also had a low grade fever for some time now. Usually around 99.6. Yesterday I had a lot of wheezing and the feeling of a "thickness" in regards to my lungs.
When I woke up this morning it was pretty much gone, so I am guessing that was a herxing going on.
Die bugs, die!
Last edited on Fri Nov 20th, 2009 12:10 by EMarie
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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Cynthia Schnitz
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Posted: Fri Nov 20th, 2009 17:41 |
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| Here in the US (you might update your profile with location), Mino is available in 50 mg tablets which can be split easily into 25 mg. They are expensive if you don't have insurance to cover them. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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EMarie
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Posted: Fri Nov 20th, 2009 23:05 |
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Took the 25 mg of Mino this morning at around 6 am. Can and does herxing start this soon? It is now 7 pm.
I am feeling sooooo weird right now.
My eyesight is really bizarre at the moment and hard to describe. Almost like wavy lines?
Had a couple of irregular heartbeats. Back to wheezing and the feeling like something is in the center of my chest. Air feels thick to breathe.
I figured I would feel stuff tomorrow, but getting it now. God, I hope this is not a sign that this is going to be REALLY bad tomorrow.
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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EMarie
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Posted: Sat Nov 21st, 2009 11:26 |
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I ended up sleeping pretty sound last night, (yeah!)
I feel okay this morning. Took my temperature and it is normal! WOW..first time I haven't had a low grade fever in months.
I had a lot of irregular heartbeats last night, it was concerning me a bit. I am taking the 40 mg Benicar every 4 hours. Heartbeat is normal this morning, and I am feeling quite well.
If I am experiencing anything, it is a bit of fatigue.
I also forgot to state that I have avoided Vitamin D for a very long time now. (6 months) I have not had blood tests done as of yet, but I will.
I do not go out in the sun. I work out of my home, so that is a plus. I eat egg whites only, and I do not like milk. I make my own "milk" from almonds.
I do not use mayo, I use Vegenaise.
Okay, that is all I can think of at the moment.
Last edited on Sat Nov 21st, 2009 11:33 by EMarie
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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Cynthia Schnitz
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Posted: Sat Nov 21st, 2009 16:53 |
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| I would not bother with the 1,25D test now that you are already taking the Beni/olmesartan. Once you take Beni, the !,25D may go all over the place, and means nothing any more. So, since the 1,25D test is expensive, hard to do right, and serves no purpose, just get the standard 25D test. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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jcwat101
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Posted: Sat Nov 21st, 2009 22:16 |
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Although some people use probiotics if they find they can't do without them, they aren't really recommended on the MP.
If you tend to feel worse during the first 24 hours after mino and better toward the end of the 48 hours, then you are likely to feel even better if you take the mino every 3 days. If you tolerate every 48 hours that is fine, but it is good to know this in case you find the IP gets too strong at times and you need a break. Then, it is good to know whether taking it every 3 days is a good option for you to give you a bit of a break from very high IP.
For people who get anxious, brand name Valium is something quite a few people on the MP use when needed -- can be useful to avoid the breathing related anxiety.
You might want to search the KB on topics like anxiety, SOB, pain etc... to see the suggestions there: http://mpkb.org (search box on upper right)
I wonder if your neck pain might be related to a trigger point (you can check the KB on that if you want).
Joyce Waterhouse
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20 years with CFS/FM/Lyme/IBS, mostly recovered from MCS and food sensitivities after 4 years on MP, http://SynergyHN.com
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Deedee
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Posted: Sun Nov 22nd, 2009 01:45 |
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Hello, It would be informative to know exactly how the doctor determined the sarcoidosis is in your neck. Was a biopsy done? Is it a swollen lymph node? Can you feel it? Where is it located?
Your Phase I sounds a lot like mine, with the fatigue and the productive cough. As my Phase I progressed, I had muscle cramps and electrical twitches in my muscles, particularly in my leg muscles. I have realized much improvements in my muscles. I was never diagnosed with sarcoidosis in my muscles, but it had to have been there. My massage therapist could feel small lumps under my skin, which are gone now.
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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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jcwat101
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Posted: Sun Nov 22nd, 2009 18:00 |
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I just wanted to add that a pain can be due to something like sarcoidosis, but sometimes the inflammation from something like that can activate a trigger point, which can make the pain worse. Sometimes one component of the pain can be reduced even if the other part can't. One may need to pay attention to both parts of the pain.
Joyce Waterhouse
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20 years with CFS/FM/Lyme/IBS, mostly recovered from MCS and food sensitivities after 4 years on MP, http://SynergyHN.com
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EMarie
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Posted: Mon Nov 23rd, 2009 11:54 |
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Good morning all!
Overall, I had a pretty good weekend. Just took my 25 mg of Mino.
To answer the question about my Sarc going secondary. I had another CT scan done with contrast and it showed that the Sarc was now in my neck tissues.
I knew without having the CT scan done that I was getting worse. That was the final straw and the kick I needed to get going on the Mino, etc.
Still have a bit of a cough, but the wheezing has subsided a lot, and my lungs do not hurt like they have been.
I have a lot of that "electrical twitching" throughout my body. Mainly it is in my chest area.
What is that and the reason it is happening??? Anyone know?
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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paulalbert
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Posted: Mon Nov 23rd, 2009 13:31 |
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Hi Marie,
There is some reason to believe that pathogens are involved in unexplained electrical sensations.
Here's a paper that shows an association between epileptic seizures and increased serum bacterial antibody levels.
http://www.ncbi.nlm.nih.gov/pubmed/6617588
In case you haven't yet found it, here's the article on pain:
http://mpkb.org/doku.php/home:symptoms:pain
Best,
Paul
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Deedee
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Posted: Mon Nov 23rd, 2009 14:12 |
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I remember early on in my IP journey during Phase I, having very strong electrical shocks in my arms and especially my legs. They tended to be episodic and strangely, would often start in my feet and continue up on both sides, blinking like christmas tree lights with shocks. The shocks were symetrical on each side, moving up at the same rate and would end with a big shock in both hips at the same time. Then it would start all over again. This usually lasted between 1/2 hr and 1 hr. I would just lay there until it was over. It was not unbearable, but uncomfortable.
Interestingly, after each episode I would seem to have improvements in my muscles, with less fatigue and cramps. My massage therapist reports to me that the small lumps she could feel under my skin on my feet and legs are now all gone. I haven't had these shocks in probably 8 months now and I am 14 months into the IP.
For me, the electrical shocks preceded healing.
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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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Cynthia Schnitz
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Posted: Mon Nov 23rd, 2009 21:37 |
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| Marie, I would like to put a spark of doubt into your mind about your sarcoidosis getting worse over the last 6 months while on Benicar. Unless you have equivalent tests at the start of Benicar showing that by now there is actually a worsening of the sarcoidosis, it may well be that your sarcoidosis was there already in your neck at the start of taking Benicar, but you were not aware of it until its presence made itself known by the immune system, activated by the MP, working in that area and showing it up with ImmunoPathology. Many of us have had surprises all along the MP path where we get IP in areas where we had no idea we had so much bacteria and were going to be problems in the future if the MP were not used. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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EMarie
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Posted: Mon Nov 30th, 2009 11:22 |
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Hi all!
Hope all have had a wonderful Thanksgiving.
Thanks for your responses. Well, to explain better what I am feeling is more of a muscle twitching. Ever have your eyelid twitch? That is what is happening with my body. No pain, just twitches. I will read those articles, thank you!
As for the Sarc spreading. I was diagnosed 9, maybe 10 years ago. The last time I had a CT scan was about 18-24 months ago and at that time, it was not showing in my neck. Had it been starting that they didn't see it yet? Sure.
However, taking the Benicar has helped with some things, but I have gotten new granulomas in the past 6 months that I had not had before.
Benicar may help with some of this, but it is not a cure all. That is why I am doing everything else now with the antibiotics, Vit D, etc. I believe it is a "team effort" with all of these things. In everything I have read, no where did anything state that Benicar by itself would stop Sarcoidosis from spreading, etc. I am also proof that it doesn't by itself. Since I have been taking the Mino I have already noticed some slight improvements which is making me VERY happy.
Breathing is getting easier. The swelling in my neck is down a tad, and my low grade fever that has been pretty much constant at 100 is now fluctuating between normal and 99.1.
I am going to stay on the 25 mg of Mino for another 2 weeks, then go up to 50 mg.
Herxing has been very minimal the last couple of doses
____________________
Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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EMarie
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Posted: Wed Dec 2nd, 2009 12:02 |
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Okay, so I changed my mind on the 25 mg. I am taking 50 mg of Mino as of 10 minutes ago. (6:50 a.m)
I do not want to experience bad herxing or anything like that, but I want to experience SOMETHING. Seems like I am not getting anything to write home about at all. I want to get this crap killed. I am sure it has been attacking the Sarcoidosis, due to some improvements I am having, but I want a little more aggressive stuff going on then I am having.
Still having considerable pain in the neck/shoulder/back and arm only on my left side.
This has been a constant for 3 months now and is getting old.
It gets worse if I do anything with activity, but that starts wearing on me. Laying on my back for weeks starts grating on my nerves, you know?
I have a friend who is a massage therapist. Maybe I will get her over here and see if that would help
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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janiceh
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Posted: Wed Dec 2nd, 2009 19:30 |
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Dear Emarie...... I was quite interested in your list of symptoms..... I have all of them except the lung stuff.... I have the visual hallucinations, inner ear, funny feeling in the head, numbness in my fingers, all of it except the lung stuff..... I have 'Lyme', and have been on the MP for about 2 and 1/2 months.
I am noticing how other 'chronic' diseases are similar in so many of the symptoms.....knowing some MP theory of bacteriality helps me understand it better....we probably share some of the same microbial soup mix.
I am into 50 mgs of mino a day and holding... I can really relate to your impatience to go higher.... I did that a few weeks ago and got very very sick. I have an overriding herpes viral thing that cycles and doubles my Lyme symptoms. Today is quite horrible as I am so nauseated from dizzines I can hardly manouver. My neuro numbness is the worst yet. I am very discouraged. Somehow, it was helpfull to hear that someone else is going through big symptoms.
I am hopeful and committed to this protocol... I know things get worse before they get better because I read that over and over as I look at the 'sucess' stories.... I have had several crises of faith since I started, but enough very good signs to stay the course....
I appreciate hearing how you manage with the higher dose.
Janiceh
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Lyme...European ACA(childhood) and Canadian exposure - very sick neurological 4 yrs... one yr. of highdose ABX and alternative treatment leads to relapse. MP started 28SE09... 4x40 Olmetec/day 100mg Mino./48hrs.
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EMarie
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Posted: Thu Dec 3rd, 2009 21:38 |
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Hi Janice
Well, nothing bad happened yesterday or today in regards to herxing. Then again, I have read that sometimes it takes a few doses and then whammo!
I had a little bit of problem with my ear plugging up a bit, but then it went away. I also had a bit of wheezing yesterday, but this morning I had a couple of productive coughs and wheezing is gone now.
My biggest complaint is this pain in my neck. Same type of pain as when you have "slept wrong." Can't really turn your head, and if you have to look to the side that is hurting, then you need to turn the entire body? :-)
3 months of this is getting old. It was getting better but I was also laying on my back most of the time. Now that I am fed up with that noise and doing more, it is flaring up again.
My friend is coming tomorrow who is a massage therapist. Oh joy!!!
So, have you noticed improvements with anything yet?
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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