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jmb88
Member
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Posted: Sat Sep 19th, 2009 02:02 |
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Thanks Marion,
I will be trying to convince my Dr. to prescribe Benicar for 4hrs. It has so obviously helped me when my BP went low. (Possibly do to sunlight exposure, and or recent drop in Vit D? I really don't know why it happend, maybe just bad IP) My BP readings are still lower than they have been on the MP, but my symptoms are better, meaning I don't feel faint, dizzy, etc.
Today:
BP - hight 82/51 , low 73/48
Benicar 40 Q3 (reduced the symptoms of dizzyness, fainting "feeling" while standing or leaning, sleepiness)
Wearing NoIRs around the clock- ordered new pair today (I stepped on mine last night  )
Zinc Oxide on face and hands, wearing dark clothing when out (not often lately)
I've gone back to 50mg Mino Q48hrs today (no IP yet)
Still taking Guiniffesen for my congestion, less often, 2x a day
Drinking lots of water and still adding salt to my meals.
Thats my update,
 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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jmb88
Member
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Posted: Thu Sep 24th, 2009 14:59 |
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Hi,
Still feeling pretty bad. BP is78/56 - very tired, dizzy, headaches
Benicar 40mg Q4hrs
Mino 50mg Q50 (down from 100 a month a go)
Extra water, Extra salt in my diet
supplimental oxygen when needed
NoIRs around the clock ( I wear my 2% indoors now and can see through them fine, could the coating have come off??)
I upped my game on the Vit. D issue 4 weeks ago when I found out it was way to high to start the Phase II (at the time I felt ready for it) wtih little IP.
I think all these additional symptoms, low BP, more IP (tight lungs)general abdominal pain are due to the drop in Vit. D. Would that be the case? probably.
I read and posted on by cubbards the "Foods to avoid" list and re-read it everyday. I realize coffee is on the list because it is an immunosupressant. Can it be used to suppress some symptoms, IP?? or should it be avoided ?? or is it up to the person?
I know some other MPers use it for IP symptoms, is that ok?
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Another quesion about my BP. So my Dr. dosen't freak at my next visit, I will be bringing all printed documented info from the MP web site to him. Any other advise? Right now I'm too weak to think sometimes.
Haning in there,
Jean Koller
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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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Leroybrown
Member
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Posted: Thu Sep 24th, 2009 16:06 |
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From my personal experience with low BP - as long as it doesn't suddenly drop, it's not a big problem. Just be careful and slow getting up from sitting or lying down.
I've had 2 bad experiences with sleeping pills. One was at a sleep dentistry office, and another was last year. They caused a sudden drop in BP which made me very sick, sweaty, dizzy, passing out etc. I ended up in emergency last year when I fell down the stairs after taking 2 trazadone. Lesson learned.
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Autoimmune Pure Red Cell Aplasia, Jan 2009 * hgb: 82, wbc 1.5
Phase 1: Sept 25/09
25D=25 1,25D=58 Aug 18/09
benicar 40mg q6hrs
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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 585 |
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Offline
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Posted: Thu Sep 24th, 2009 17:30 |
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I think all these additional symptoms, low BP, more IP (tight lungs)general abdominal pain are due to the drop in Vit. D.
That's the way to bet. You can expect more symptoms as the D drops, and your immune system becomes more effective.
As for coffee, the immunosuppressant effect has a short life time. A cup in the morning still gets me to work.
The MPKB page on chlorogenic acid has this comment: MP patients should limit their daily coffee consumption to no more than two cups.
http://mpkb.mp-dev.com/doku.php/home:food:chlorogenic_acid
Just don't overdo the coffee.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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jmb88
Member
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Posted: Thu Sep 24th, 2009 17:37 |
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Thanks Chris and Leroybrown,
I am taking the precausions of Low Blood pressure, taking everything really slow. I live in a three story house . I haven't even seen the 3rd floor in a month.
I'll have a cup of coffee now, but no more than one or two today, probably only when symtoms are bad, which seem to be everyday now.
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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marion villa
Member
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Posted: Thu Sep 24th, 2009 21:48 |
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jean:
I bet is the dread D dropping, that happen sonner or later to all of us.
about the cofee, personally, I like to take one mug in the morning, I havent quit to take it, because is a confort to me, I think it is good to awake, I dont know if I feel better, but I enjoy to take it. Just a cup or two, I doubt it has effect in modulatory stuff.
see you
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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jmb88
Member
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Posted: Tue Sep 29th, 2009 02:45 |
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Hi,
It has been a rocky week. BP has been low and symptoms have been high
Today, I had a relief from the low BP symptoms. Not too much dizzyness, fainting feeling or low energy.
I am still back on 50mg of Mino because my IP got bad when my Vit. D 25 dropped. I am taking this slower than ever now.
Benicar 40mg Q4hrs
A little kidney pain
Some lymph nod pain in my neck
Some lung tightness ( not as much as usual)
Drinking water
Adding salt to diet
Wearing NoIrs
Covering Up with clothes and zinc oxide on face/hands
Staying indoors
Thinking of some more hobbies (indoor that is)
I didn't take my BP today, because it says not to if you are feeling ok, so I didn't.
The Drs office drew blood for my Vit D test today. Will post it when I get the results. I've been extreamly dilligent.....so hope for the best.
Jean
Last edited on Tue Sep 29th, 2009 02:46 by jmb88
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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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jmb88
Member
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Posted: Fri Oct 2nd, 2009 19:29 |
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Marion or Joyful or anyone else,
I was wondering if there is a timeline for this low blood pressure to possibly resolve itself while on the MP?
I ask because I need a light in the middle of the tunnel......
Today hasn't been as good as the past few. Feeling faint, feeling numb in limbs, at night it is hard to sleep because I wake up with the numb legs, arms, cold hands and feet. I'm loosing weight, low energy. All I can do is light house work, I can't rest, my worries are too strong. And I am trying to eat more, but with the low energy I have little appitite.
In 2007 May, I had a full cardiac work-up, which included the treadmill, chest monitor, and finally the catheter in the femoral artery to check for any blockage. All the tests came back with no problems at all. I know that is important to ease the worries.
I haven't gotten the results back from my Vit. D blood test on Monday, I called this morning. So, I'll have to wait over the weekend to find out. A bit anxious to find out.
I also worry about my next visit with my Dr. he might freak out about my BP. I know this site isn't for ranting or venting, but I will be prepared with all the printouts regarding Low BP and how Benicar is safe, etc. etc. I know this and have been on Benicar for five months every 6hr at least and always maintained a BP within the "clinical range" until now, starting in Sept., Low BP.
I am prepared to tell my Dr. that low BP is part of this complex disease and to back it up with the print-outs. Maybe I need a little support or advise on the approach. If you have time.
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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marion villa
Member
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Posted: Fri Oct 2nd, 2009 21:15 |
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jean:
I am sorry to hear you about feeling bad,I know that low BP is about IPR and it must pass as other type of IPR, but I havent experienced myself as strong as you have. I think that the key is to find a mino schedule that dont give you such a hard time,maybe more than 48 hrs, maybe 3 days or even 4,
what happens if you stay in only benicar? do you feel better?
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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jmb88
Member
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Posted: Mon Oct 5th, 2009 17:58 |
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Hi,
Thanks Marion for the advice. I did try Benicar alone back in early Sept. but felt I needed the added benifit of the Minocycline anti-inflamatory affects. Do you think I should stop the Mino and see how the Benicar alone is. Won't I just have to start the whole process over again. I feel stuck where I am?
I was out yesterday with my 5yrs Natalie took her to a quick visit to the pumpkin patch and pony rides. I covered head to toe, NoIRs,and loaded on the zinc oxide.
My two boys went to a Cardinals game with their Dad and Gramps so i felt I needed to do something for her. Trying to keep things normal in my family despite the way I feel most of the time. I just want to be there for them.
I do stay indoor almost all the time.
Wed - Sept 30 - Benicar 3hrs - 4hrs., no Mino
Thurs - Oct 1 - Benicar 4hrs, 50mg Mino
Fri - Oct 2 - Benicar 4hrs, 12.5mg Mino - Felt good, low BP but didn't feel it
Sat - Oct 3 - Benicar 5hrs, 50mg Mino - Felt weak, low BP dizzy, faint
Sun - Oct 4 - Benicar 5hrs, 12.5 mg Mino - Felt OK, low BP didn't feel much
Today, Mon Oct 5 - Benicar 5hrs, 50 mg Mino
I lost 18 lbs this last 5 weeks. I'm eating every day three meals. No Vit. D food, very little carbs, if any, no folic acid (hard to find anything without it).
I'm trying not to loose any more weight, my mother-in law found a bread, by Food for Life, certified Org. with no folic acid and 15gms carbs, hope that is ok.
Will check in tomorrow.
Jean
Last edited on Mon Oct 5th, 2009 18:04 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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Knochen
Moderator
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
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Posted: Mon Oct 5th, 2009 18:20 |
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Hi Jean,
This may or may not apply in your case, but I found 50mg of mino to be a very difficult dose, and I got a good deal of relief by going up to 75mg. After that, 100mg was no problem. I know that seems counter-intuitive, but the mino has its own suppressive effects at higher doses. You might try that to see if you get some relief. You may also want to try more frequent dosing at a lower level
http://www.marshallprotocol.com/forum32/4819.html
You will need to take it easy on yourself for a while. Your body is working very hard to fight the disease, so take your fatigue as a warning to slow down. You can have you life back, better than ever after a while 
my mother-in law found a bread, by Food for Life, certified Org. with no folic acid and 15gms carbs, hope that is ok.
Check the other ingredients for things like sunflower oil or other "helpful" ingredients. I simply don't trust anything I don't make myself. If you can buy yourself a breadmaker, you won't be sorry. Of course, low carb and bread don't really go together! 
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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marion villa
Member
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Posted: Mon Oct 5th, 2009 21:48 |
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jean:
I am worried to hear that 18 lbs in 5 weeks!! it is a fact that you are IPRing very hard...
I dont know if you need to stop mino, but it worth a try, you will find out in a week or less if you feel better,
I lost that pounds in my first month on mino, it was terrible IPR, i should say I was close to die, but I learnt how to manage mino and I got saved by the bell. Please be careful, what your dr say? (if he say something at all)
I will give you my phone number if you are interested, please pm me
marion
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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jmb88
Member
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Posted: Wed Oct 7th, 2009 12:49 |
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Thank you Knochen and Marion,
I have decided to stop the abx for now because of my intolerable IPR. I will increase my Beni to 4hrs. I need rest from the IPR and will continue when I get my strength back. I will have to get more Benicar, I will start by asking my doctor, we'll see.
I hope for my BP to level out or at least it's symptoms. I need to get my appetite back, so I don't loose any more weight (at least not this quickly).
I also think my hormones are adjusting and that might take more time, untill I am out of this intolerable state I will be on Beni only. Today was spent being very dizzy, almost like vertigo, not just while standing up, but all day.
I will still be:
Benicar 40mg 4hrs, SL 20mg as needed
Avoiding Vit D Foods
Avoiding Natural light/bright indoor light
Wearing NoIRs around the clock
Wearing Zinc Oxide on face/hands when not goved
Water and extra salt
Knochen, the bread my mother-in law got me is "Flourless" Made with sprouted 100% whole grain. Ingredients: Organic sprouted wheat, filtered water, organic sprouted barley, organic sprouted millet, organic malted barley, spelt, fresh yeast, organic wheat gluten, sea salt
I think it is OK. But I also think you are right, I will get a bread maker and control the ingredients myself. I am so weak now I don't think I have the energy to pour everything in the bowl.
I have to get the kids off to school now, breakfast is served!
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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jmb88
Member
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Posted: Fri Nov 20th, 2009 04:20 |
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I am starting phAse I over at 25mg mino.
Beni is 40mg x 4 hrs
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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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
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Posted: Sat Nov 21st, 2009 03:37 |
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Hello Jean.
Thanks for keeping us posted on your status.
I think you did the right thing going back to Benicar alone for a while to give your body a rest. How did it go while you were off the Minocycline?
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