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beeletcher
Member in Phase 2
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Posted: Tue Sep 2nd, 2008 22:55 |
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Hi Moderators,
I started my Minocycline yesterday, a 25mg capsule. I have been waiting for something to happen, nothing yet. I understand from other members that this takes a little while. I am feeling a little energetic! I will patiently wait.
Benicar: q6h, 40mg, since Aug.25/08
Symptoms:bone pain in shoulders, elbows, wrists, worse at night, hot flashes,starting hoarseness-straining to talk,stiff neck,inner shakiness,stiff jaw,twitching thumb,sore rt rib cage. All these are tolerable and interesting.
Light exposure: none. Darkened apartment, Noirs inside. Out after it gets dark to get groceries or walk. Noirs used in stores.
My 25D was 30.8 ng/ml on Aug 11. Could this be slowing down my bacteria killing?
I have no stress at this time and no commitments and I am taking it easy. I will check in in a few days.
Thanks,
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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natalie17
Moderator
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Posted: Wed Sep 3rd, 2008 06:30 |
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Hi Brenda,
Thanks for letting us know you have started minocycline. See What should I know about Minocycline?
Please review the information threads pinned to the top of this forum so you will be able to independently locate answers to frequently asked questions.
Be sure to read other progress reports on your MP journey. They will help you learn how to report, how to manage immunopathology and sometimes you will discover the answer to a question you forgot to ask.
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding natural light and vitamin D, getting adequate rest, pacing activities, eating well, using palliative meds appropriately and managing the immune response by adjusting Benicar and minocycline.
It may take a week or two to feel the effects of each new minocycline dose level. It is best to err on the side of caution and stay at each dose level for 3-4 doses to make sure symptoms are tolerable. Don't ramp up until you are able to tolerate a symptom increase unless experience tells you that an increase would dampen intolerable symptoms. See When to increase antibiotics
An increase in any symptom that correlates with MP therapy is probably due to immunopathology. These symptoms can be controlled by adjusting MP medications and using palliative meds as needed.
My 25D was 30.8 ng/ml on Aug 11. Could this be slowing down my bacteria killing?
It may be supressing your immune system but if you are taking all precautions to avoid D then sometimes it just takes time for it to decrease.
Be sure to check and re-check your foods agaisnt the Foods to Avoid.
The Importance of Reducing 25-D
see others 25-D Coming Down at Last ...
Take care,
Natalie
____________________
CFS/ME| Inderal Clonazepam OC Protein Powder Calcium| Sept06 1,25D=75 Dec08 25D<4.4| avoid light D, NoIRs, pretected when out | Ph2-Feb08 | ABCofMP
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beeletcher
Member in Phase 2
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Posted: Mon Sep 8th, 2008 02:34 |
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Thanks Natalie for your info.
Benicar 40mgs q6h.
Minocycline 25mgs every 48 hours. I have had 4 doses. Started Sept 1st.
Palliative meds: Homeopathic Nux vomica for heartburn. Arnica montana cream for shoulder pain.
Light exposure: 2 hours in total this week. Cloudy. Covered and Noirs.
Symptoms: Light sensitivity-8 (even before I started MP)
Light headed-3,BP 90/64 not a problem
Hot flashes/chills-3
Bone pain(shoulder to hands)-3 to 8(one episode)
Loose stools-2
Jaw/back/rib/teeth/neck aches-2, noticable but not intolerable
Heartburn-one episode 8
Muscle weakness-3, a few times
Hoarsness-3, a few times only
Comments: All symptoms are declining. Worst was 44 hours after 2nd dose of Mino-bone pain in lt shoulder. I am feeling well with a fair amount of energy. I think I am ready to ramp up to 50mgs minocycline. I have made a graph to plot the IP to see if there is a pattern.
Plan: Start 50mgs minocycline on Sept 9th. Will get 25D checked tomorrow according to my docs order for a monthly 25D.
Any comments?
Thanks,
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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beeletcher
Member in Phase 2
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Posted: Mon Sep 15th, 2008 22:24 |
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Hi Moderators, just checking in.
Benicar: 40mg/q6h
Mino:now at 50mgs,every 48,except today,trying 72hours.
Palliative meds:none
Light:approx 3hrs over the week,covered,Noirs,in and out
Symptoms:Light sens:7
Lightheaded:3
Hot flashes/chills:3
Bone pain:4 to 7(worse lying down)(mostly lt arm)
Neck/back ache:3
Muscle weakness:3,not always
Hoarseness:3,a few times
Heart palps: few on 2 evenings
Ear ache:after walking in the cold,&sore lymphs nodes behind ears
Rib/rt chest ache when walking:3
Comments: Concerned over last 25D.See signature.The only thing I can implicate is my goat's milk, no Vit D added(emailed company),but 10%Vit A.Will not drink any this month. All my other dairy sources have no D and <6%VitA. Also wondering why my bone pain happens when my arm is horizontal. Is it more of a tendon pain at the bone attachment? Humerus and radius is where the pain is.
Plan: Continue at 50mgs Mino,watch for more symptoms without goat's milk. Will ramp up if I feel less IP this week. I want to try Benicar for my bone pain at night.
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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VEZ R.N.
Health Professional
| Joined: | Fri May 19th, 2006 |
| Location: | USA |
| Posts: | 2471 |
| Status: |
Offline
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Posted: Tue Sep 16th, 2008 05:18 |
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Thanks for checking in B.
It takes quite some time for the 25, Vit D levels to come down to therapeutic levels. A small amount of milk without added Vit D would not keep your levels elevated. Watch your sun exposure and read labels on your foods staying away from those foods known to be high in D.
Be sure you are getting enough calcium:
SEE: Don't I need to take a calcium supplement to prevent osteoporosis?
You will have many symptoms during your recovery period.
It is important that you become independent in medication management and gain experience by adjusting MP meds using your personal tool kit to manage immune system reactions. This skill will carry you smoothly through the protocol.
You are doing a good job, keep up the nice work and take good care.
Best,VEZ
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beeletcher
Member in Phase 2
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Posted: Wed Sep 17th, 2008 21:25 |
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Thanks Vez,
I have a question: I waited 72 hour between my 50mgs Mino doses. I got more herxing then, the night before and also last night. Should a person stay on the 72 hours between or go back to every 48 hours?
Thanks,
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Offline
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Posted: Thu Sep 18th, 2008 00:51 |
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Brenda
The aim or the key is for you to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of your meds dosing and schedule as suited individually to you within the guidelines.
Some find:
extending to 3 day dosing achieves more tolerable symptoms.
or some find 3 day dosing may increase immune response.
Dont let symptoms go to intolerable, take your dose at a shorter time if necessary to hold your symptoms at tolerable.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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beeletcher
Member in Phase 2
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Posted: Thu Sep 18th, 2008 03:24 |
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Thanks Barb for your quick reply.
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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beeletcher
Member in Phase 2
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Posted: Wed Sep 24th, 2008 21:07 |
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Hi Moderators, just checking in.
Benicar: 40mgs/q6h.
Mino: 50mgs,back to every 48hrs.
Palliative meds:aspirin(one night),Ibuprofen(one night),both bone pain (8).
2hr Healing Touch(helped with shoulder pain).
Light: About 3 hrs since last post,covered, Noirs. Walk in morning in dark.
Symptoms: Basically the same as last post,ears ok. Except:
Light phenomenon on retina,first thing in am, splotchy blackness for about 30 minutes,every day since Sep 14.
Severe chills for 2 nights,with bone pain.
Comments: Tried Mino 50mg every 72hrs:once, more IP, next time not. Tried Mino,25mgs q24hrs,more IP second day,with severe chills and bone pain,just before Benicar dose. Stopped the goat's milk.
Plan: Will continue Mino at 50mgs q48hrs for a few more days. Can't seem to find a pattern to my IP,except worse at night.
Thanks,
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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natalie17
Moderator
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Posted: Thu Sep 25th, 2008 05:19 |
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Hi Brenda,
I see you've been on 50mgs of mino for quite a while now (16 days or so). You might find your symptoms decrease with an increase of mino.
Remember to keep a record of how you reacted to extended and frequent mino dosing. It will be valuable information for the future.
Natalie 
____________________
CFS/ME| Inderal Clonazepam OC Protein Powder Calcium| Sept06 1,25D=75 Dec08 25D<4.4| avoid light D, NoIRs, pretected when out | Ph2-Feb08 | ABCofMP
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beeletcher
Member in Phase 2
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Posted: Thu Sep 25th, 2008 10:12 |
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Hi Natalie,
This is where I get mixed up. I am feeling pretty crummy tonight and had to take an extra Benicar. So on Friday I will take 75mg Mino and see if my symptoms decrease. I am keeping a very accurate diary.
Thanks,
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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beeletcher
Member in Phase 2
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Posted: Thu Oct 2nd, 2008 19:47 |
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Hi Moderators, just checking in:
Benicar: 40mgs/q6h,every 4hrs when working.
Mino:75mgs/q48h,started Sep 26. Just took 4th dose today.
Palliative meds:Ibuprofen once(bone pain),aspirin once(bone pain).
Light:Total 3hrs,in and out of car. Had sunflare 5hrs after hanging clothes out for 15mins at noon(covered).Benicar taken(40).Helped.
Symptoms:
Light sens:7
Retinal blackness:3,every morning for 30 minutes.
Lightheaded:3(usual bp is 80/60).Not a problem.
Fatigue:3,mostly evenings.
Hot flashes:2
Chills:none since increasing Mino to 75mgs.
Bone pain:4-7,worse laying down.
Muscle weakness,palps,hoarseness:all occasional
Rib/chest aches while walking:3
Low back pain:2,while standing too long.
Stiff neck:2
SOB:2, on stairs only.
Comments: I feel better since increasing Mino.I can see more of a pattern with Herx since stopping goat's milk. Perhaps my 25D is decreasing.Worked 3-5hrs days first time since MP. Extra Benicar worked wonders. It actually feels good to be out in the community again. Can the Benicar accumulate? Last night was the first time my shoulder didn't hurt while sleeping. Yeh!
Plan: I'll go back to Benicar q6hrs tomorrow, if I find the Herx tolerable I would like to ramp to 100Mino in the next few days. My doc will be away mid Oct, so want to have Rx from her to start phase 2. Should I apply for Phase 2 now?
Thanks to everyone for the great work you do! It will be so great to see my health and energy restored over the next few years!
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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natalie17
Moderator
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Posted: Fri Oct 3rd, 2008 04:58 |
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Hi Brenda,
Glad you've lost the chills and slept without shoulder pain .
Based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. Please send for it asap so there will be no delay in your progression to phase 2. When you see or call your doctor, be sure to ask about the tests you need to monitor your progress on the MP.
Before you commence the next phase, please post in the Phases Two and Three forum so we can discuss the details of your next antibiotic. We look forward to welcoming you there when you have received a response to your completed questionnaire.
Look forward to seeing you in the phase 2/3 forum.
Thanks,
Natalie
____________________
CFS/ME| Inderal Clonazepam OC Protein Powder Calcium| Sept06 1,25D=75 Dec08 25D<4.4| avoid light D, NoIRs, pretected when out | Ph2-Feb08 | ABCofMP
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beeletcher
Member in Phase 2
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Posted: Mon Oct 6th, 2008 17:34 |
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Hi Natalie,
Thanks again. I have got the questionnaire. I will be getting my standing order bloodwork today which includes a 25D, so I will fill out the questionnaire after I have got the result.
Also I want to experiment with the Mino. I had a bad blood pressure day yesterday, so I am not taking any Mino today and see what the 72 hour interval does. I also want to try the lower dose, every 12 hour Mino to see if it acts like an anti-inflammatory for me. I am keeping graphs of my IP and want to be prepared going into Phase 2.
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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beeletcher
Member in Phase 2
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Posted: Sun Oct 12th, 2008 21:15 |
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Hi Moderators, just checking in,
Benicar: 40mgs/q6h,every 4 hrs when working.
Mino:75mg/q48hrs except tried 72hrs between, then 2 days 50mg/q12hrs. Info for toolkit.
Palliative meds:none
Light:3.5hrs,in and out.Covered/Noirs.
Symptoms:same as previous post except:
Sore eye sockets:5(one day, too much light at work).
Lightheaded/low bp:7,every morning,lowest is 66/50,this is what I was calling retinal blackness. Eat salt/fluids, better after 1/2 hour.
Shoulder pain:5,when lying down.
Comments: Mino: 50mg/q12hrs is an anti-inflammatory for me. 25D has dropped again. I'm getting there!
Plan: Start 100mg Mino tomorrow. Send in Phase 2 questionnaire today. See doctor again Oct 15.
Thanks again to everyone!
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
| Status: |
Offline
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Posted: Thu Oct 16th, 2008 01:27 |
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| Thank you Brenda. You may now make your next post in the phase 2/3 forum so we can discuss your plan for progressing to phase 2 before you start. Thank you, Barb ....
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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beeletcher
Member in Phase 2
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Posted: Thu Jan 1st, 2009 20:37 |
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Hi Moderators and Happy New Year!
Just checking in.
Phase 2 meds:
Benicar: 40mg/q6hrs.
Palliative meds: none.
Light exposure: The same. We are having shorter days. mostly 5min trips in and out of car.
Symptoms:
Fatigue: 5
Joint pain/bone pain/stiffness: Increased with increased Mino: 6. Have to keep moving/worse at night keeping still. Losing use of right hand doing simple things.
Temp fluctuations: 5, no chills.
Nausea: 2, under fluorescent lights. Noirs on.
Lymph drainage: less: 2.
Good things: Can tolerate more light indoors. After one week living with 3 cats on Christmas vacation, I had NO symptoms of my lifetime of cat allergies! Yeh!
Comments: Can see a pattern develop with IP. More IP but tolerable. Vit D will be checked next week. I feel like it is down.
Plan: Will increase Mino soon. After I see my Vit D level. Not much happening in January, so I can tolerate more IP.
Thanks for everything you do. I see Th1 in everyone I know. I hope one day that my family will give MP a try.
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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beeletcher
Member in Phase 2
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Posted: Sat Jan 31st, 2009 16:29 |
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Alumni update:
I am plodding along, handling the IP and keeping good records.
Phase 2 meds
Benicar: 40mg/q6hrs.
Palliative meds: Homeopathic Nux vomica for heartburn. Healing touch once/wk.
Light exposure: Same. In/out of car, short trips.
Symptoms:
Fatigue: 5. Need more sleep now.
Joint/bone pain: 5
Temp fluc: Rare
Lymph drainage(under lt collar bone): 3, daily. That's a good thing.
Nausea: 4, increasing. Fullness in stomach after eating/burping. Occ abn pain.
Uterine heaviness: 3, like I am going to get a period, haven't had one for 1 year.
Short of breath: 3, noticed this as I bought a flute.
Numbness in hands overnight: Occasional.
Good things: My blood sugars are easier to control with some lows, even though I am not active.
Comments: My last 25D(Jan 6) was up again to 32!! Christmas overeating! ESR is now 36, normal is 0-20. My worst days are Day 4, 5, and 6. Will have bloodwork done on Feb 2.
I have searched on the site about the uterine pain. I would think I have Sarcoid (Th1) there and in my stomach.
Thanks again for all you do!
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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BARNEY
Moderator
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Posted: Wed Feb 18th, 2009 15:49 |
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Brenda,
I really believe that the sarc is everywhere in our bodies...I have had it in so many places it is unbelievable.
Are you resting as much as you can and a little more? Are you drinking plenty of water? I discovered that I need to stay even more hydrated when I am having to be out in the sun (driving, etc). You can try this and see if it works for you like it did for me.
Glad your sugars are better and mine was a little better last night....I am hanging in there for MP to cure it tooooooooooo.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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beeletcher
Member in Phase 2
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Posted: Mon Mar 16th, 2009 16:38 |
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Hi Barney,
It has been a long time. I ended up in hospital for 10 days because of my extreme dehydration and starvation. Then I got a deep vein thrombosis in my leg. I am now on Warfarin and will be for 3 months. My Mom came to look after me and she has saved my life. I am getting my energy back and my bowels are back to normal.
I will be posting what happened in the next couple of days. It was very scary. Runaway IP. I never want to go through that again. I am on no MP meds, not even Benicar as I was vomiting that up also.
So thanks for your kind words. I will be proceeding with caution as far as the MP is concerned. I will not start anything until after I have time to really study the website and get my leg healed up.
Brenda
____________________
sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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