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patrickburke
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 24 |
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Posted: Thu Nov 20th, 2008 23:02 |
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Hi Jamie,
Always expect the unexpected  and never push yourself to the limit, keep something back in reserve for a bad herx day  .
Good luck,
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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Bones197828
Member
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Posted: Mon Nov 24th, 2008 21:28 |
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I just ordered my glasses and should get them within the next two weeks.!!! I can not believe this.
I wasn't even completly prepared for this. I thought for sure that I was going to have to fight to get this new doc to do the MP. Oddly enough I did not have to and I was given all the meds that are required to start the MP. I am currently having to talk with my insurance compony to cover the Benicar but I feel that is going to be a fight that will be easily won. I have come this far, nothing is going to stop me now. I am in awww over how quickly this is all happening.
I worry that I will get really sick and not be able to care for my little girl. You see it is just her and I in the home and I do not want to cause to much stress on my little one. She already has to deal with mommy not feeling well I would hate for her to have to see me really really not well.
I can not wait to start the MP. I can not wait to start getting better. I wish for a time machine so I could fast forward a year or two and be healthy and happy and STRONG again. WOW! is all I can say.
This new doc seems just great. Almost to good to be true. He told me on the day that I saw him that "everyone I put on this protocol gets better and you will too". It is like night and day. From one doc to the other.
I can not wait to start showing signs of gettinghealthy again, as I have said before my brother is ill and has been ill for a long time. He has been on steroids for a long long long time and they have just done totaly damage to his body and he is payin greatly for it. I feel that once he sees how well i am doing that he too will give it a shot. I mean really what does he have to loose? My sister too, her children all very young are so sick all the time. Always with the lung infections, asthma, broncitis, and repeated bouts of pneumonia.
I have been trying to elminate the Vit D from my diet and I just can not believe how much of it I eat on a daily basis. I do not eat meat so a lot of my foods are dairy. Cheese is my favorite and I will be sad to not have it anymore but it is so worth it!
Thanks for reading everyone, I will post again soon.
God Bless!
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40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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patrickburke
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 24 |
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Posted: Mon Nov 24th, 2008 22:59 |
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Jamie,
As you truly start to cut out all D from your diet and start to feel better because of it you will begin to notice how bad it makes you feel when you do ingest it. That feeling bad will make you not want to eat those foods and you will be happy to avoid them . Trust.
It all just gets better. But you are going to have a good few months of feeling rough whilst your body annihilates most of the bugs. So heed well my post above and take things steady. I have a daughter to look after too but she was old enough to help me at times, bless her. Find a nice comfortable balance with the IP and hang on to it. Phase 1 is your learning phase use it well.
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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Bones197828
Member
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Posted: Mon Nov 24th, 2008 23:58 |
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Can anyone please send me a link to where I can find a listing of meals to eat. I would like to get a meal plan and just follow that. I have never been one to eat well and cooking is not my best area. So if I could get say 7-10 meals, I will just eat that over and over. I am looking on this site as much as possible and I found the foods to eat and meal ideas before but for some reason I can not find it now.
Thank you everyone for taking the time to read and reply.
God Bless.
Jamie
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40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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Julia
Advocate (on leave)
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Posted: Tue Nov 25th, 2008 00:00 |
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You don't have to give up cheese!
Dairy products should be free of added Vitamin D, and contain no more than 6% of Vitamin A.
: 6% of Vitamin A restriction is only used as a guideline to suggest that a product might also be fortified with Vitamin D and not labeled as such. eg. not referring to carrots.
[from Foods to avoid]
Buy real cheese, not processed. Buy Irish cheese from grass-fed cows! Don't worry about the vit A level marked on Irish cheese, we do things differently, but we don't have fortified milk
FOOD TIPS
Knochen's MP recipes
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Always consult a physician
Essential Info; FAQ; Julia's story
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patrickburke
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 24 |
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Posted: Tue Nov 25th, 2008 00:30 |
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Hey,
Don't forget English cheese is free from added D too! (and it's better than Irish  )
Pat.
But is does have some natural D so go steady!
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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Bones197828
Member
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Posted: Tue Nov 25th, 2008 01:03 |
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Patrick, do you think you could give me some meal ideas? What do you eat on a daily basis for breakfast, lunch and dinner? What all do you put together to make your entire meal? Like I have said before I do not eat very well and I am an awful cook, so trying to find meals that are easy and tasty would be awesome! Any ideas at all would and will be greatly appreciated.
Thanks, God Bless
Jamie
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40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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patrickburke
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 24 |
| Status: |
Offline
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Posted: Tue Nov 25th, 2008 01:21 |
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Jamie,
You don't need to be a good cook. I try and eat very simple food. Low in fat, especially animal fat as that is where D is stored. I no longer eat breakfast.
Nice lean cuts of chicken breast and modestly sized beef steaks with simple starches such as rice and potatoes or egg free pasta. Mix in some nice fresh fruit and veg (no mushrooms) and you are laughing. Stay away from processed foods, that whole food chain is compromised IMHO. Keep away from the fat on meat especially pork or lamb. Gravy used to wipe me out for example  .
Oat meal seems OK (unfortified milk or plain water) but shy away from the instant stuff as it will be fortified like virtually all breakfast cereals. Stick to wholemeal bread as at least over here in the UK white bread is fortified with folic acid which you don't want either. Rice cakes are nice as snacks, Julia gave you some good links above also. You will get used to it.
Try a little olive oil instead of butter or margarine (often fortified).
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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natalie17
Advocate
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Posted: Tue Nov 25th, 2008 01:52 |
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Jamie, in addition to Pat's great information I thought you might like to have a look at this;
What you ate for your meals
As found on http://www.mp-lifestyles.org
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Bones197828
Member
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Posted: Tue Nov 25th, 2008 18:26 |
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Oh my gosh, I just read (now i know that the study site is closed) that one can not move on to Phase II if the study site is not open? Is this correct? I really hope that it will not hinder me from completing the protocol or moving forward when I am ready.
Am I correct on this? One can not move to phase II if the study site is closed.
Granted I have yet to even start, but I have just about all that I need to begin. I am waiting on my glasses to arrive. I have made little lamenated cards to remind me of what to avoid and some of the okay's. I am so excited to get well. I hope that you all who are working so hard are able to get the site open again. Thank you all so much for all of the time and effort you put in. I am sure that it is safe to say that we all appreciate it more than words could ever say.
If someone could please get back to me and just clarify this I would appreciate it. I am sure that it will take me a while any how to move to phase II, I just do not want to be left out to dry when that time comes.
Again, Thank you,
Jamie
God Bless
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 210 |
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Posted: Tue Nov 25th, 2008 19:57 |
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| You can still move on to Phase 2 without being a member of the study. You just need to get the guidelines from your doctor, who can get them from the Professionals' forum.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Bones197828
Member
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Posted: Tue Dec 9th, 2008 21:53 |
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I still have yet to recieve my glassses and I am waiting to start. I have all my meds that I need and I have been following the elimination process of Vit.s.
I have to say that I am scared to start this. I am worried that I am going to become to ill to care for my child. I am afraid that I may have a freak accident with the meds and die. I have faith that I will get better I am just really scared.
This is such an in depth protocol and I worry about what can happen.
Will we all be notified if and when the study site opens back up?
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40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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natalie17
Advocate
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Posted: Sun Dec 14th, 2008 09:54 |
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Hi Jamie,
It is natural to be scared of the unknown - I certainly am, but I found it comforting to know the the Marshall Protocol has an excellent safety record, immunopathology can be controlled and your Doctor can have access to trained medical professional's (including Dr. Marshall's phone number if needed) in the Private Section for Health Professionals' forum.
Also, if something does go horribly wrong (highly unlikely), you can have the Information for emergency room personnel printed out and on hand.
Hopefully you have a great Doctor and loved ones around you to help with your children if needed, but try to remember you're in control.
Try to focus on how you'll feel as you start to improve. Trust me - it's well worth the work .
If any news is announced on the study site everyone will be notified. For now, it is best to have your Doctor active in the Health Professionals' forum mentioned above and you can ask general questions here.
Take care and all the very best,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Bones197828
Member
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Posted: Mon Dec 29th, 2008 14:24 |
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Good Morning all! Today is the start date for me and the MP. I have my glasses and all my meds. I took my first dose of Benicar at 6:30 this morning.
I just want to make sure that I am understanding correctly.
I start the Benicar for at least 2 weeks giving my IP and then start the Mino every 48 hours after that. Increase dosing of the Mino every week or so letting my body adjust.
Is that correct?
I have really noticed lately that my mind can not keep track of anything. I have set my phone for all my reminders on when to take my meds.
I will be getting internet connection sometime this week so I will be able to stay in contact with all of you(s).
I appreciate all of you who respond.
I think that my biggest issue at this time is eating. It is to be a low carb diet basicly and that is all I eat. I do not eat meat and the starches were all I had aside from veggies. Does anyone have any ideas of some quick tasty meals?
Thanks All! Have a great day.
God Bless,
Jamie
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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Bones197828
Member
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Posted: Mon Dec 29th, 2008 18:28 |
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Can I take peto bismal? I ask because I frequently need to take that. Is this something that I can continue? Along with my Xanax, I am still taking this in order to sleep. I am down a whole dose since when i started but have yet to move past that in the weaning process.
Thank you.
Never mind I read on here that I can but it will need to be 4 hours after or before my dosing for the MP. I got. I knew I read it some where here just didn't remember where.
Thanks.
Last edited on Mon Dec 29th, 2008 22:18 by Bones197828
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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edj2001
Advocate
| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
| Posts: | 150 |
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Posted: Mon Dec 29th, 2008 22:52 |
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Hi Jamie,
Congratulations on starting the MP!!! Now is a good time to read again the Phase 1 document.
It is very important to keep taking the benicar on schedule.
Phase 1 is a learning experience to see how you respond to the benicar and then mino. Everyone is different. You need to adjust the mino to maintain tolerable IP. Increase the mino in 25 mg increments only when you are comfortable with the IP.
Gene
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Sarcoidosis 1998| MP Dec 05| Gene's Story| About MP| ABC of MP| Perspectives|
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Bones197828
Member
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Posted: Fri Jan 2nd, 2009 15:47 |
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I don't know how this keeps happening but when I put in my account information to log in I get brought to this site.
http://www.marshallprotocol.com/my_account.php
That is my old account. For some reason it would not always let me in so I made a new one. Thought the mods would like to know.
Thanks,
Jamie
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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Bones197828
Member
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Posted: Fri Jan 2nd, 2009 18:09 |
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Hi all, I am feeling a bit better today. A lot more tolerable, I am not having to use as much pain meds today.
My question today is about my heart. Now I have read just about all link on this site, but I just want to put it out there for a response from someone else.
I have was awakend last evening by a "pop" almost of pressure in my chest on the left side. It hurt enough to wake me then just dimmed down a bit on the pain, now that pain has not gone away just not as powerful as it was when I woke up in the middle of the night. Also, I have really bad gas that is painful in the stomach and my back is HOT then normal then HOT then normal.
Is this a good indicator of IP?
I ask because when I was Dx with Sarcoid 6 years ago I was stage 4 and pretty much done for. My body was completely covered, not much of any of my organs where not effected. (did that comes out right?) Meaning my heart was invovled, so with that being said is this considered IP?
Am I to take more Benicar?
Am I suppose to be asking this Benicar question to my doc and not you(s)?
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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Bones197828
Member
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Posted: Sat Jan 3rd, 2009 18:27 |
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Hi all, First I would like to say that I am not sure if I am suppose to be posting in the section about how I am feeling, so if I am not suppose to be please correct me and I will post in the correct thread.
Today I feel like I have a really bad head cold. The mucus in my chest is feels as if it is ripping up my chest and I just feel pretty much raw on the inside.
I am weak and just plain tired. THe back of my neck hurts on the inside. (when I was little I had strep throat once a month, it was awful. I eventually had to have my tonsiles remove because the antibotics stopped working for me (after 7 different kinds).
My mood is really in the crapper for the most part. Short wicked I could say. Feeling kind of like my mind and self are sitting in a box. Really lonely.
I always appreciate everyone responses.
Thank you.
Jamie
____________________
40 MG Benicar 12/29/08 25 Mino 1/3/09
Sarcoid 2003, Fibro, Tietz, IBS, DDD, Depression, PTSD, Anxiety, Acid Reflux, Stomach Ulcers, Tintitus, PCOS
When the power of love surpasses the love of power, this world will know peace
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Offline
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Posted: Sun Jan 4th, 2009 08:12 |
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Jamie,
I have was awakend last evening by a "pop" almost of pressure in my chest on the left side. It hurt enough to wake me then just dimmed down a bit on the pain, now that pain has not gone away just not as powerful as it was when I woke up in the middle of the night. Also, I have really bad gas that is painful in the stomach and my back is HOT then normal then HOT then normal.
Is this a good indicator of IP?
Well, herx/IPR does vary a lot, but odd things are often herx. And if the sarcoid has progressed at all, most of your organs are involved, so you'll see a lot of odd things as herx.
Am I to take more Benicar?
That's a first line defense against suspected herx.
Am I suppose to be asking this Benicar question to my doc and not you(s)?
We aren't doctors, so clearing what you read here with your doc would be smart. You probably have more time to be reading this site and the other MP sites than your doctor does. It's common for folks to have to bring the info they find here to the doctors.
Today I feel like I have a really bad head cold.
Could be a real head cold; one's just gone through my entire family. And I've been sleeping in the recliner, as an activated, effective immune system can generate a huge amount of mucus. It'd drown me in my sleep if I wasn't careful.
I found that guaifenesin and the nasal sprays work, and if I took them at the same time as the benicar, the combo worked better- YMMV. And if you have the same virus I had, you'll want to look for the new pressurized, super-sized can of nasal spray, or a neti pot if so inclined.
My mood is really in the crapper for the most part. Short wicked I could say. Feeling kind of like my mind and self are sitting in a box. Really lonely.
Moods can be a herx all by themselves, right now you do have a lot of bug/virus killing going on in your noggin. Does it get better just after the Benicar dose?
I suppose you could distract yourself by starting your taxes, but probably finding a good comedy at hulu.com would work better.
-- Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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