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jmb88
Member
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Posted: Thu Apr 9th, 2009 14:25 |
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Day 29 on MP.
Benicar 40 - 6hrs.
Minocycline 25mg - 48 hrs.
Hi all,
I saw my doc. yesterday. I told him how I was doing and he wanted to check my BP.
I brought up about my kidney pain, which is pain on both sides of my "flanks". So just to make she he did the recommended tests.
He will mail me a copy for my records and call if there is anything suspicious. I made sure he had Dr. Marshall's Phone number in case there was an issue.
I guess I'm a bit panicky about my doc getting worried about the MP. I gave him the print out of the link about how the tests might show concern, but since we are on the MP, it means that the process is working. Hope he understands that.
I also noticed that the minocyline was giving me some help with the inflamation yesterday. About 3 hrs. after taking my 25mg, I felt a bit more open in the lungs.
I've also been noticing a pain in the back of my neck. It feels like a swollen gland, right near the top of my spinal cord. It was painful to turn my head.
That's my update. Thanks for listening to me.
Jean
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MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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Deedee
Member
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Posted: Thu Apr 9th, 2009 23:52 |
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50 mino makes me feel better too, but interestingly, I get more IP on 75 and 100 mino. Glad to hear your lungs feel better. Don't be surprised if you continue to cough because I have read that a lot of people do after first starting the MP.....also cold-like symptoms.
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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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jmb88
Member
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Posted: Sun Apr 12th, 2009 18:04 |
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Day 33
Benicar 40 mg-6hrs
Minocyline 25mg - 48hrs- last taken 9am today, April 12, 2009
BP 119/72
combivent inhailer - every 4 hrs.
Yesterday I was unexpectedly not photosensitive. First time since I started I really don't know why. From what I've read on the study site, it might be due to my current D level, which I don't know what they are right now.
I will be even more diligent, it is funny how I look forward to the overtcast days, which is today in St. Louis. Hopefully I'll have new news tonight.
Does anyone have other ideas??
I started some IP last night, chest and flank areas, a bit of restless legs too. The back of my neck was sore too, I still think it is the lymph nods.
Could not sleep last night for some reason. My mind was racing everywhere. Bug eyed too. Fell asleep around 3am, up at 7:30am.
Hopefully I'll be so tired, I'll just crash tonight.
Have a happy Easter/Passover or just a good day.
Jean
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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Knochen
Moderator
| Joined: | Wed Oct 17th, 2007 |
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Posted: Sun Apr 12th, 2009 18:59 |
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Could not sleep last night for some reason. My mind was racing everywhere. Bug eyed too. Fell asleep around 3am, up at 7:30am.
That's probably due to light exposure. It can take several hours to kick in, and insomnia and racing thoughts are common with light in your eyes.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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jmb88
Member
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Posted: Mon Apr 13th, 2009 03:55 |
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Thanks Knochen,
I plan to take even further steps towards avoiding light exposure. I where my Noirs 24 hrs a day. I managed a nap today, all curtains and blinds closed with my Noirs on. My husband smiles, he's very encouraging.
I need to venture out much less too. I plan to do grocery shopping, etc. at night only now and any other errands that can be done at sundown. I have my full brimed hat and black umbrella for only necessary day-time outings.
As far as the food goes. I don't think I'm missing anything..... I'm eatting very simply, small amounts of meat, fruits and veggies, not on "the list" I have practically no processed food now. I do still have coffee in the morning. I might try to eliminate that too. I have sometimes two mugs.
I switched to Rice Milk now, it's "Classic" with no forified ingrediants. Could that be a problem?
Jean
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MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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Sallie Q
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Posted: Tue Apr 14th, 2009 02:04 |
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Jean
I have been on and off coffee
Find I do better when I can regard it as a medication, because some IP it does seem to squelch
so at present I am limiting myself to 2 pots of 2 cups each per week and not taking on days when I do not expect anything to happen
i.e. not working, noone visits etc
heal well
Sallie
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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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Barney
Moderator
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Posted: Tue Apr 14th, 2009 03:34 |
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Jean,
Where were you able to find rice milk that is not fortified? Everyone I have seen has a lot of Vit D added.
Since you are having problems, you might try this:
Take Benicar 40mg @ 4 hrs and move your Mino (25mg) daily. You will still kill bugs but a little slower, which is still okay. You may stay on this for a few days until things settle a little for you and then you can go back to pulsing Mino and move the Benicar back up to @ 6hrs.
I think you will find this helps a lot.
HANG IN THERE, WE WILL MAKE IT!!!
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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jmb88
Member
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Posted: Wed Apr 15th, 2009 00:52 |
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Thanks Barney,
First of all I found Rice Milk, "Rice Dream, Original Classic" at Whole Foods Market. I checked the ingredients several times and there is no added calcium of vit. D. You can search for a location near you at this site.
http://www.wholefoodsmarket.com/stores/StoreList.php?zipcode=63130&source=header&x=35&y=10
About increasing the minocycline until the symptoms subside I will if it continues. I just took 25mg this morning and felt the anti-inflamatory effects today. Just a slight increase in symptoms starting tonight, about 8hrs later.
Ill keep it in mind for next time. This will be my 3rd week on 25mg. I'm starting to wonder when I should start the 50mg. I belieive my IP should be down some more before.
I'll check in tomorrow.
Jean
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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Barney
Moderator
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Posted: Wed Apr 15th, 2009 03:29 |
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Jean,
You can move up the 50mg Mino, if you feel IP's are under control. As you go thru MP you will find it easier to decide when to move up.
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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jmb88
Member
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Posted: Fri Apr 17th, 2009 03:20 |
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Hi Barney,
Benicar 40mg - 6hrs.
Minocyline 25mg - 48 hrs last taken today 4/16
BP - 109/72
I took 25mg of mino today and my IP was very manageable. I little discomfort - achy feeling in back, soreness in the back of my neck (my glands and slightly enlarged) and I bit lung involvment. But has been much reduced since last week.
My next dose will be 50mg on Sat. I let you know what happens.
Jean
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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matthew.gatenby
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| Location: | Sydney, Australia |
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Posted: Fri Apr 17th, 2009 04:51 |
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Jean,
good to hear you are on your way nicely..
go to the 50mg when your ready , but many of us i have seen found 50mg to be the worst. and the dosage i stayed on the longest and really waited for my ip to settle before lifting.
i am currently on 100mg mino and 25 was easiest and 75 and 100 seem to be easy
but 50mg was a rough ride
IBS symptoms , back pain parethesia all were very strong at this level.
they were no where near intolerable just a bit all over the place.
so i think you are on the right track taking it on a saturday.
if you seem to get the stronger herx on the 50mg i think its a great practice ground for managing IP.
seeings the responses were stronger could try builing my toolbox.
trying benicar sublingually on more noticeble herxs.
trying the mino closer together (i had mixed results with this)
trying more regular benicar and even further apart.
as i believe phase 1 is the training ground before introducing the other antibiotics.
i think i would of liked to have been a bit better organised at trialling the alternative methods .. but it was a great place for me to try these things and be able to guage there effectivness.
i was glad i tried this around the stage as, if i didnt , i dont know wether or not id have the courage to do it at later phases in the protocol.
just food for thought
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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jmb88
Member
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Posted: Sun Apr 19th, 2009 04:43 |
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Hi Matthew,
Day 39 on MP
40mg Benicar - 6hrs
50mg Minocycline - 48hrs (last taken Sat. 4/18/09
B/P.109/67
I read your post on Friday. Thanks for all the advise. I believe - knowlege is power.
I did take the 50mg mino today, Saturday morning. I really felt nothing different until tonight around 10pm. Strong ache in back of neck-glands, runny nose (unusual for me), kidney area pain, slight rapid heart rate.
I was suprised there was not much photosensitivity today, just started a bit tonight.
I did notice a burst of energy - don't know if that's anything to make note of - it lasted about 4 hrs. I kinda feel it might be the anti-inflamatory affects from the minocyline???
I read up on the use of minocycline to create my toolbox. Thanks for the advise. I will be prepared if any intolerable IP happens. Since the IP just started tonight, I hope to get some sleep. I can't help visuallizing the bacteria being attacked, it's my driving force. 
Have a good day,
Jean
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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jmb88
Member
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Posted: Fri Apr 24th, 2009 03:56 |
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Hi all,
Day 47 on MP
Benicar 40-6hrs
Minocycline 50 - 48hrs
B/P all over the place - right now 109/69, earlier today 120/71(record high since I started the MP)
I've been on the 50mg minocyline for almost a week and have to say my IP hasn't increased and almost seems to have lightned up a bit.
I've been really tired lately, so much more than usually. I check my B/P when the sweeping feeling comes but it is all around the same, as above. This seems to me the only IP that I can post about.
I don't want to get scared that the MP isn't working anymore.  I've had a few family events I needed to attend, but was cautious about the sun exposure. However, I felt I should have been indoors.
So, that leads me to wondering about my light exposure? It's sunny and springy here in the Mid-West and I'm wishing for winter to come already. I will have to up my diligence on the light exposure. I have very little photosensitivity too.
I checked the food avoidance list and I've been really good with that. I believe the next thing to check is light. I read on this site that some people the light exposure is more important than to others.
I'll go with that, I have my binder(print outs from the study site) and will read through it tonight to get any more ideas. Any other thoughts out there....would be welcome.
Jean
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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Barney
Moderator
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Posted: Sat Apr 25th, 2009 03:36 |
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Hi Jean,
That tired feeling....is called fatigue....and it is the big thing that is common to all MPers.
To me, sunlight exposure adds to the fatigue, but it seems, if I remember to eat lunch by 1pm and I drink plenty of water while I am out....that helps a lot.
With the fatigue....make sure you get plenty of rest, drink plenty of water and when you can, avoid the sun.
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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jmb88
Member
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Posted: Sun Apr 26th, 2009 17:47 |
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Hi Barney,
Day49
Benicar 40 - 6hrs
Minocyline 50 - 48hrs
I gave in to the fatigue and rested. I had my 2% Noirs on in a very dark room and just rested and slept. Almost right away I felt the IP return, still very manageable.
Muscle ache - legs, lower back, upper arms
achey, swollen glands - back of neck
charged feeling in muscles or body tissue
numbness in limbs and extemities when resting
foggy brain, wave like sensations going throuhg my head
Lungs are surprisingly clear, but I feel "activity" in them, almost like restlessness (sounds a bit odd, but it is hard to describe)
I must have been the light exposure I think. I'm staying in all day today. Lots of board games and reading.
I'll check in later,
jean
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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jmb88
Member
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Posted: Thu Apr 30th, 2009 03:24 |
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Hi All,
Day 52
Benicar 40 - 6hrs
Minocyline 50 - 48hrs (last taken 4/28/09
Yesterday I felt most of the IP at night, about 10 hrs after taking the Mino, I think I'm seeing a pattern with the IP.
Also I noticed it seems to come on stronger when I make an effort to rest, a real effort, lie down with 2% Noirs, almost complete darkness.
IP symptoms: back of neck pain, lung tightness, tightness in throat, muscle weakness, brain fog (really bad). I'm still coughing up a bunch of white sticky mucus, gross I know.
My plan is to stay in all day tomorrow. I'll be checking in then..
Shout out to Barney and Aussie Barb for their help recently
Jean
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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jmb88
Member
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Posted: Sat May 2nd, 2009 03:39 |
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Day 54
Benicar 40, 6hrs
Mino 50, 48hrs.
Ive been needing my inhailer a lot more lately. Also, the clear/white sticky mucus is pretty persistant. The inhailer helps me cough it up, but it keeps coming back and filling up my lungs. Hard to take a deep breath. The minocyline days seem to be better because of the anti-inflamation effect I get from it. Lungs clear out more during the day and at the 10 hr. mark they begin the lung tightness, throat closes, coughing mucus thing.
I've been having a hard time falling asleep lately. Some strange dreams/nightmares. I've been reading around the site and rrealize it is pretty common IP. They come and go, some nights nothing, others seem like I wake up a lot and realize it was from an extra crazy dream.
Has anyone felt a feeling like what they are dreaming comes true.....I know very weird. I know it really isn't but the feeling is there. Could this be IP. I've had a bit of extra brain fog lately, wondering if it is related??
Anxiety is high but manageable.
Staying with this does for a while, it seems to be producing plenty of IP for now.
Jean
Last edited on Sat May 2nd, 2009 03:42 by jmb88
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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matthew.gatenby
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| Location: | Sydney, Australia |
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Posted: Sat May 2nd, 2009 23:22 |
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Jean,
i get the mucous thing often .. try using
Guaifenesin works by drawing water into the bronchi. The water both thins mucus and lubricates the airway, facilitating the removal of mucus by coughing. One may notice a sense of dry mouth when taking this medication. Water consumption is important, not only to help with dry mouth, but also to improve the effectiveness of the drug.
you can buy a syrup or tablet from most chemists .. i dont use it all the time only on the bad days ..
asthma
i seem to get the asthma thing regularly .. i found menthol lollies to help work otherwise .. i just go through ventolin inhalers.
with anxiety i have valium , again i dont use it often (as it can be addictive)
but is great for the times when ip of an organ and anxiety combine .. and it makes you really panic.
Dreams coming true ..
well i have this .. i used to have it when i was young actually and now on the mp its back ..
sometimes its dreams and sometimes it like dejavu like situations i am in ive been in before .. etc its strange to describe but yes .. i have something similar ..
i am also having very vivid dreams and nightmares like i woke up in the middle of one kind of fighting my way out of it .. would of been pretty amusing to watch.
____________________
Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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fostymom
Banned
| Joined: | Mon Aug 18th, 2008 |
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Posted: Sun May 3rd, 2009 03:30 |
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Jean,
I agree with Matthew about the guaifenisin. I suffered (pre MP) with exactly what you describe--as soon as the phlegm is excreted, it's right back again. I prefer the cough medicine over the inhaler.
Now, I am ready to begin either Phase 2 or Modified Phase 2 and I am not looking forward to the lung issues--I've couged enough in this lifetime for 100 people.
But........I can't go around it.............gott go through it, right?
Also gotta get those zith divided up...........someday. Take care, Carol
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Fatigue HighChol SleepApnea RUQPressure Skin? Abdominal PulNodules Ph1-26Jan09 Ph2-07Jul09 D125-32(Apr08) D25-9(Jul09) D25-4(Apr09) D25-14(Oct08) NoIRs coveredup
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jmb88
Member
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Posted: Sun May 3rd, 2009 13:57 |
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Thank you Matthew and Carol for your posts,
I'm having a bit of a hard time now, but I'll never give up. My husband and this study site are what I live by. I do so much reading of other posts just to see if I'm ok. I'm taking Benicar 4hrs today, it helped.
I'll get the Guaifenesin tody at the drug store. I think I took it before the MP with one of my bad bronchitis episodes. Lot of water..... I must remember.
The vivid dreams are bothersome. I seem to be getting sleep so I won't obsess, but the de-ja-vu feeling is creepy. I'm lucky I have my kids they're a pleasant distraction, they keep me so busy it's impossible to think too much about anything. Hope it's only a phase.
I just printed the updated, new and improved Phase II. I mailed one to my Doc for his file. I need to deciede with him I suppose, if I do modifided or not. It looks like you both are headed toward Phase II, I'll be following your journey.. thanks for your kind help.
Jean
____________________
MP start date: Mar.11,2009, Phase I, 40mg Benicar (6 hrs), minocyline 100mg (48 hrs), albuterol inhailer, clonazepam for sleep, chr. fatigue,asthma,joint pain, Paresthesia,chr. bronchites, fog brain, anxiety, insomnia, depression.....
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