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HeatherK
Member in Phase 2
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Posted: Fri Oct 5th, 2007 22:49 |
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Start date of Benicar: Sept 20, 3007
Start date of Minocycline: Oct 4, 2007
Benicar 40 mgQ6hr schedule 5:15, 11:15, 5:15pm, 11:15pm
Minocycline 25 mg/48 hrs @ 8 am
First day on Mino, orthostatic intolerance increasingly worse during day, heavier fatigue by 4pm. Took one extra dose of benicar , adjusted between 11:15 and 11:15pm. I'm taking 1.5 mg melatonin for sleep, I'm waking but not up, so sleep is better. Today , the 2nd day, fatigue heavy, my light head not as bad as yesterday, but spent day mostly resting lying down, too fatigued to try any household chore, managed to get something cooked for supper.
Am seeing that I am going to spend a lot more time on this couch, (no bed on the main floor) , so had the foam cushions replaced that were over 20 years old. My sister had called a while ago, before the MP , and asked how I was...and I answered again....that I was on the couch ...She said We are going to have to bury you in that thing!!!!! But I FEEL better about it now, I'm still here but with HOPE and LIght at the end of Tunnel....
I started to watch the 2006 MP Conference and really impressed and encouraged by the panel of recovered/recovering patients. It really strengthened my resolve to see this through. A fellow MP'r sent this to me, bless her heart....would sure recommend anyone considering the MP now to see this.
Thankyou Y'all!
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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HeatherK
Member in Phase 2
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Posted: Sat Oct 6th, 2007 19:11 |
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I neglected to leave this link for me in the Benicar forum
http://www.marshallprotocol.com/forum19/10313.html
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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judithann
Guest
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Posted: Fri Oct 12th, 2007 07:18 |
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Hello Heather
I am wondering how you are doing. Post often on line... Keep up dates and information here.
It is such a great reference point for you too.
It is alway important that the board is aware of your progress and how well you are balancing the medication and the IRP.
Remember the Phase One is the learning ground...it is where you will gain the experience and confidence to move to foward. I am so glad that you are here and that you are so thrilled to be on board!
Of course, in the most selfish way of all ,I am so pleased to have someone so close to home on the MP! (even though I did sneek off to Alberta, and now an stuck out here until I am well enough to fly home)...
You go get that couch fixed up so that it is the greatest place on earth to rest...I am a believe in full..."REST and REPAIR mode"!!
I remember one young mother who was doing the Protocol would often say to me that she felt like she was complaining when she posted her pains and problems........but of course she eventually rose above that. She is doing so well in her recovery too!
You have such a great attitude about this treatment and I will tell you that will carry you through many immune reponses.....
Anything I can ever help you with or encourage you through...I am honored to help.
Take Care my friend....As Ever Judithann
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MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
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HeatherK
Member in Phase 2
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Posted: Fri Oct 12th, 2007 18:27 |
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Dosing and schedule
40mgBenicarQ6hr, 5:15am, 11:15am, 5:15pm, 11:15pm
40mgBenicarQ4hr: during the day in 5 days out of the last 7 days
Mino 25mgO48hr, 8am
Melatonin 1.5mg nightly
used no tylenol this week
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Still very fatigued, weak legs, resting all day. I do get on my feet to stay for an hour or so in the evening , abt 8:30 to 10pm.
I have just realized going back over my journal here that each morning that the Mino 25mg is due I have awoken earlier with overall achiness, that quickly becomes large muscle pain in legs, buttocks and arms. So I have been dosing Benicar 4 hrs for the next 12 hrs on those days. Fatigue is worse too on those mornings, so sleeping/dozing again all morning.
One of those Mino dose mornings I was awakened abt 3am with a full blown head cold, coughing, sneezing, running sinuses, thick throat. Remembered the advice of using Benicar for ANY symptom sooo...took a Benicar then and stayed Q4hr for next 12 hours. Sure turned that around. Still just getting the usual occasional daily itchy ear canals, nose and sometimes eyelids.
Yesterday (on a trip from couch to washroom) I tried to fold towells from the dryer, sitting in a chair..didn't finish...the bath towells were too heavy too lift!!
Other symptoms: new itching dry patches on skin, bowell movements are firming and formed; still tight, hard muscle in calves of legs at night .
Yes Judith I did get the couch fixed!!!! have new foam in cushions, a little too firm right now, but will soften soon, as I am on it constantly
I've had 3 more light reaction episodes this week, accidently under too high lux in the house here. I'm learning though to recognize the symptoms and go back and check the lighting and sure enough, way over the 30 lux.
Only takes abt 5 minutes and I start to get light headed/ faint/ overall weakness hits quickly and bowells urge to move. If I get lying down flat immediately and out of the light, this passes. This is so NEAT, because this I have been living with for over a year and COULD NOT figure out what I was doing/eating to cause this to happen, It was so unpredictable.
Even my refrigerator is lit way too bright!!!
I do have Drs appt on Monday at noon, and will make sure I am dressed properly and with NOirs, K cream, gloves etc. and use the 4 hr Benicar dosing before and after. Makes me wonder if I am reacting to artificial light like this , how will I react to first time in daylight.????
Dr. has results from a bone density and called me to come in . Sooo..I am going armed with printouts from the MP on bone loss issues. If I am as fatigued as now, I hope I can just talk to the DR. over the phone about this and have my husband deliver the printouts .
I am more convinced that more than ever I am on the right track with this, as the herxing is happening!!! Thanks to Dr. Marshall and protocol I have hope to regain my life back.
Hold Fast
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Fri Oct 12th, 2007 23:02 |
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You are certainly a fighter..... Please review all options in My immune response/symptoms are too strong. What should I do? and adjusting MP meds and your personal tool kit to manage immune system reactions and Why and when do you recommend taking minocycline frequently?
Assess the options one at a time. Do not hesitate to use any of the adjustments suitable to you.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed. Hang in there.....
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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judithann
Guest
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Posted: Tue Oct 16th, 2007 18:42 |
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Hello Heather.
Thinking about you today....was wondering if you had review the link fro Meg adjusting MP meds..... and tried to increased your Mino....?
Remember this is the phase 1 ,where you get the experience of managing, and really learning how to balance you own immune responses.
Do post often so we can see how you are doing and see if there is anything that we may be able to support you in.
I chuckled at you saying the Fridge light was too bright.....In the beginning even when some cracks of daylight would come in the window...it bothered me....I became so light sensitive that 30 lux was not comfortable either...when everyone was gone, and I was alone.... a soft candle or a soft glowing lamp with a cover over it ...like a soft scarf (we are talking low 15 W bulbs, nothing fire hazardous. It was such a comfort to me. I got to thinking maybe it was mind over matter that I needed it that dark.... but in hind sight, it was indeed what I NEEDED for me. My eyes were in crises and it was that soothing to them too.
Going with a very intuitive part of our selves, is such a part of this journey. One of the reasons I encourage others to treat this Protocol recovery with all the respect you would any other life saving treatment, is because when you give it your all, then you are more in-tuned. Our attitude can be fed positively with encouragement and hope .
Take Care. Keep your Chin Up...REST and REPAIR
Lovingly as Ever Judithann
Last edited on Tue Oct 16th, 2007 18:50 by judithann
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MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
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HeatherK
Member in Phase 2
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Posted: Tue Oct 16th, 2007 20:02 |
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Dosing:
40mgBenicarQ4hrs from 4 am. to midnite on Sat Oct 13
40mgBenicarQ6hrs - Sunday till now
25mg MinoQ48 -Oct 14th and 16th
I am VERY light senstive right now. Wow . Friday nite,(the last day I posted) my husband took me out after dark to a meeting , incandescent but brightly lit public building. I used the 10% NOirs at first, but soon changed to 2%. I was in this light 40 minutes.
Before going home we decided to go to supermarket for a few things, my first time since on protocol. I went in wearing 2%, but even going through front doors I remember squinting at the bright light behind the NOirs . I lasted 10-12 mins, I got the familiar weakness/light head/frontal forehead pressure/legs going rubbery. Dave got me to the car, I laid back and totally covered by face from parking lots lights with Noirs still on. He went back to pay for the few things. I felt soothed in the dark and Ok at home an hour later,so before bed I watched abt 40 min. of video with 2% NOirs, no other lights.
Benicar I had at 5:30pm and 10:30 pm...off to bed and set alarm for 4am Benicar.
Saturday, took 4am beni; woke again at 6am, couldn't sleep, uncomfortable all over, restless, got up to reread Megs reply to consider more Mino. couldn't decide if I should ....had some breakfast and by 8 am, my legs were yanging, felt like climbing walls, achiness getting worse so took Beni and 2 xtr strength tylenol. Symptoms got worse, anxiety/panicky, so restless, emotional/tears, gassy gut, At 9am, my hubby got me into into totally darkness, this is the worst I have felt thus far...almost a 'lost 'feeling and scary.   Drank water. I then reminded myself that I had read someone posted that each herx/symptom does come TO PASS...so rest Heather.  It gradually subsided , took 12noon Beni. Bowells moved, palish movements as had been the last 2 days.
By 2pm , was able to eat with a light on, feeling some better, By 4pm Benicar dose I was able to read on the couch. Tried to get supper at 5:30 but 'crashed' again...too much light over my stove!!!! 25 watts. Its getting changed to 15 wt.
On couch till 8pm Beni dose, feeling better enough to walk outside in yard after dark for few minutes. Another bowell movement..the same.
Beni at midnite, but a pain in left wrist joint appeared at 11pm and with tylenol , finally got to sleep abt 1:30am after taking an epsom salt/baking soda bath.
Reviewed the Mino info again, I probably should have taken it but couldn't decide which way to go, take more or less. My debilitating fatigue is always worse the 1st day on Mino, but other symptoms are worse towards end of 2nd day and morning of 3rd. I'm having difficulty deciding if the heavy fatigue is herx or light sensitivity??? I have lived with this so long, but still unclear. Looking back, should I Have tried the Mino on Sat morning.?
I did some rereading of light sensitivity and I shouldn't even have tried going out in these first few weeks , esp as I knew I was getting more sensitive at home.
I now also realize I was not wearing a broad brim hat on Friday nite, it did not occur to me that I needed it INSIDE, but I won't go to this stores without one now. I am also going to try to get these glasses more light tight, I read what others have done. I can slip two finger up under these NOirs over my cheeks, so am getting reflected light too...especially without the shade of the hat..... , my own fault!!!
Anyway, Sunday am, wrist pain gone, but still somewhat achy and throat/ear/nose itchy again (a daily come and go symptom)
Took 25mg Mino, rested in dark all morning, felt peacefull. That afternoon I wore 10% while our daughter visited , 2 lights on ...65 wt total in room. Achiness lessened as day progressed . No hurting pain. Rested still on couch reading by light of a 2t watt. . Later some computer and DVD with 2 % Noirs...that seems OK.
BenicarQ6hr was Ok all day. and following 2 days.
After Fri nite/Sat experience I decided I was not going to try the trip in daylight to Dr. on Monday. I called and explained why. She sent message back that it was only results on bone density ...osteopenia...needing CAL/Vita D, but because I couldn't take it right now, it could wait! ( I had sent in to her the printouts of the Osteo/Th1 info off the MP site.) I was relieved to not go out.
Today was a Mino day , and Fatigue/weak legs increasing as day goes on. Just resting, no muscle pain, so staying with BenicarQ6hr.
Also since Saturday I now have a dosing med timer...I was messing up...maybe thats why the last couple of days are better!!!
Holding Fast
Heather
(To reduce white space at the end of a post, slide the space bar on the right all the way down and move your cursor to the end of the page. Or hit the end button or the down arrow to advance the cursor to the end of the page. Then, click backspace until the while space is gone.)
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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DNStog
Member Advocate
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Posted: Tue Oct 16th, 2007 23:24 |
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Heather, those bright fluorescent lights and skylights do love to sneak around Noir frames.
Your experience shopping was much like my own over the MP years. I'm happy to say, I no longer have to wear Noirs indoors shopping although I wear a good pair of amber colored prescription sunglasses when the lights are bright or the sun is shining through skylights. Otherwise my regular bifocals work just fine. It is also nice to know that I no longer have to hug the shopping cart to balance myself when shopping.
Wishing you well, gently...Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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HeatherK
Member in Phase 2
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Posted: Wed Oct 17th, 2007 15:39 |
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Thanks Donna!
I really appreciate hearing from you 'veterans' out there. It gives us new recruits hope. I always look right away to see your member status and seeing you in Phase 3 is encouraging. It is sooo good to know that there are others that understand these disease symptoms...Oh yes ....even hugging the grocery cart, especially waiting in the checkout line. My husband does all of that now, my venture in the other night was my 'outing'. Next time it will be just a walk in the dark in town!!!
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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HeatherK
Member in Phase 2
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Posted: Sun Oct 21st, 2007 18:54 |
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40mg BenicarQ6 5:15am, 11:25am, 5:15pm, 11:15pm
25mg MinoQ48hrs: 8 am
Melatonin 1.5mg nightly
On Mino days the debilitating fatigue/brain fog hits within an hour of taking the med. I bundle up and sleep, my body temp fluctuates from 96 to 98 degeesF. Fatigue lasts until the evening and lifts abt 8 pm. Other symptoms is the re-ocurring itchy nose and ear canals, scratchy throat.; Pain on frontal lower side of right knee, not new. (2 yrs). The 2nd day I am experiencing aching back, elbow herxing (right) and lightheadedness.
Yesterdays Mino dose also brought on an emotional Herx. I got very agitated, irritable, emotional, crying, body temp was 96.2F. I took 40 mg BenicarQ4 for rest of day, and this subsided within an hour of Benicar. By evening, I got hardly believed I had been soo upset, and my husband took me out after dark to a friends place for an hours visit.
Encouraging to me.....is that after years and years of loose bowell, my bowell movements are so improving!!! This is Eureka for me!! I have had a couple of days of formed , lengthy movements, the day after Mino med.
Usually every night I get out for a walk in the yard, sometimes further, a couple of telephone poles down our road. Am missing seeing the fall leaves this year, so take a flashlight and break off branches to bring in to enjoy the next day.
Today is day after Mino, slept most of morning, fatigue is light, and brain fog is light as well. Able to read book and follow the plot. Not much aching today, in legs mostly. Being very careful abt excess light exposure here.
Hold Fast
Heather
Last edited on Sun Oct 21st, 2007 18:58 by HeatherK
____________________
CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sun Oct 21st, 2007 23:41 |
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We recommend extra caution and special attention to detail if you have any level of brain fog or memory impairment. It's important to use a medication dosette and reliable alarm system. If necessary ask for support from a reliable family member when dividing, setting out and or taking meds and deciding when to adjust MP meds.
All your symptoms have been reported by others and suggest immunopathology. Charting may be helpful to assess response.
You are experiencing firsthand that immunopathology can be very difficult to control and avoiding light is essential for you. See Testimonials to the need to avoid light and you will see you are in good company. You are doing everything right..........
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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HeatherK
Member in Phase 2
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Posted: Fri Oct 26th, 2007 18:31 |
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Dosage: 40 mg Benicar Q6hr-usually 5:15, 11:15, 5:15pm, 11:15pm
25mgMinoQ48 : Mon, Wed, Fri @ 8 or 9 am this week
1.5 mg Melatonin at bedtime
Meg , I do have a dosette and alarm now, over a week ago, its much better, as I was getting some Benicar dosing late due to the brain fog
Update
Fatigue is dibilitating, on Mino days , but yesterday was the day after and it has not lifted since Wed morning Mino dose. I have been BenicarQ4 hrs since yesterday morning at 5 am. because of the achiness/pain/light head with the fatigue./ brain fog. I get back and forth to bathroom and kitchen when needed.
Just wondering if this is too much Benicar ??, over 30 hrs now (every 4 hrs). I reread the info on Mino dosing this morning wondering if I should take todays Mino , decided to, and of course fatigue is still bad, and head very light, I wonder if I should take Mino again at 12 hours .... would be abt 8:30 tonight.
I'm finding hard to determine if this fatigue is a continual herx, or the disease still, accentuated by light issues. ??? To find the right balance of herxing and meds.??
Both days are rough following Mino...It not that I am in a lot of pain during the day, the nights are worse, painful achiness interfers with sleep.
I'm also finding I cannot tolerate much time on computer, I am using the 2% NOirs now. I am still in the dim house, and finding have to shut all lights out especially as I sleep after breakfast again. I haven't been outside, except after dark for a few minutes only after dark in the yard to get fresh air.
thanks again, Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Fri Oct 26th, 2007 21:43 |
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Thanks for reporting. We are standardizing progress reporting to make monitoring and data collection easier. Please use this simple format each time you post a report. Briefly list these details of your current situation only:
MP meds:
Include doses in mg & schedules for each, recent changes, number of days at current dose/schedule
Non-MP med use this week:
(List ongoing non-MP meds in your signature line)
Light exposure this week:
Symptoms:
List only those that are significant and recent. Indicate if they are tolerable or intolerable. A rating scale of 1-10 is helpful.
The best palliative for fatigue is rest. Please see I have insomnia and fatigue. What should I do? Note the new caution regarding melatonin.
What are you taking for pain?
Finding the low enough/high enough dose level when increasing or changing meds that works for you is part of the experience gained throughout the MP Journey. Until you know, it is best to err on the side of caution. You may want to continue low-dose, frequent mino altho it's fine to continue Benicar every four hours also.
If symptoms are approaching intolerable or going past tolerable, please review all options in My immune response/symptoms are too strong. What should I do? and adjusting MP meds and your personal tool kit to manage immune system reactions. Assess the options one at a time. Do not hesitate to use any of the adjustments suitable to you.
Remember, the recommended first step when symptoms are intolerable is to increase Benicar to every fours hours and assess effect. Chewing or sublingual dosing may give faster absorptiona and relief. See When and why should I vary my Benicar schedule? and BenicarQuiklink.
As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed. Hang in there.....
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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HeatherK
Member in Phase 2
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Posted: Fri Oct 26th, 2007 22:46 |
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X-tra Strength Tylenol for pain. Works Ok, but am going to get something stronger my doctor
I'm going to continue BenicarQ4 tonight and hopefully settle back to Q6 before I take Mino again. I find I need at least 2 litres of water a day to draw off these toxins.
Thanks for the links and caution abt Melatonin. That could be contributing to this .
I do get rest, thats all I do, and need to accept if all I do is what I absolutely have to , to look after myself then so be it. My husband is supportive in this. I've been quite emotional and irritable today along with this overwhelming fatigue so I have felt over the top....intolerable I guess . I KNOW there is something Good happening in the midst all this!! Bug killing... just sometimes hard to remember this!!
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Fri Oct 26th, 2007 23:12 |
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Low-dose, high-frequency minocycline may work for you to reduce symptoms.
See Do I need to detox while on the MP? and Water: How much should you drink every day?
I'm glad your husband is supportive.
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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HeatherK
Member in Phase 2
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Posted: Mon Oct 29th, 2007 03:24 |
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Dosing Last 2 days : 40gmBenicarQ6 starting Saturday Am
Schedule: both days: 5am, 11am, 5pm. 11pm
1 dose Tylenol for headache
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After the 3 rough days this week, I decided to not take the next Mino at 48 hrs (due this morning -Sunday) , and to monitor symptoms. Saturday was day after Mino , fatigue was slightly less tolerable than the previous day, but still a very light head, unable to be mobile, than absolutely necessary.
Saturday , 2nd day after Mino
Fatigue : 8 , Light head: 8 PhotoSensitivity :8
Sunday , 3rd day after Mino
Fatigue: from 7 to 4 by evening. Lighthead: from 7 to 2 by evening, Photosensitity : 4
Am wearing 10% NOirs in 30 lux light most of today. Really seems to help the light headedness. The 2% NOirs on computer is absolutely necessary now. I made the 2% ones more light proof in the cheek area ....no reflected light into them now if I wear a hat.
Tonight I actually feel stabilized on the 40 mg BenicarQ6hr and will take the 25mg Mino in the morning. I decided to try the MinoQ72hr first, (instead of frequent Mino dosing) on the basis of past experience of the last 5 yrs with anything I tried in antidepressants and in alternative medicine. I ALWAYS could not take the regular dose of anything ...I always had to start with 1/2 dose or 1/4 dose; I just seemed so sensitive. I was the "exception to the rule" with the naturopaths that treated me. My medical DR. once told me that little old ladies took 4 times the dosage of an antidepressant that ended me up in ER one night!
Here goes...for tomorrow!
thankfully, Heather
Noted
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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HeatherK
Member in Phase 2
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Posted: Fri Nov 2nd, 2007 20:25 |
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Dosing: 40mg Benicar Q6; schedule 5:30am, 11:30am. 5:50pm, 11:30pm
25mg MinocyclineQ72 Oct 29, Nov 1st. 8am
Tylenol for day long headache yesterday Nov 1
Symptoms:
Fatigue gradually abating from "8 "on Oct 29...down to a "4" today.
Bowell movements range from firm to looser. One day there will be 3 movements, the next day none, this has happened twice.
Insomnia one night, had abt 4 hrs sleep in 24 hrs, couldn't sleep next day. But the next night slept OK. Since I stopped Melatonin 1.5mg on Oct 26, that heavy fatigue I was experiencing has lifted.
Photosensitivity seems to be decreasing a little since last week, with indoor light, at home. Also, I was out for the evening Wed night, in two public buildings , neither were lit as bright as stores or malls. I was fine with the 2% Noirs (which I have altered to stop peripheral light, and I also wore large brim hat)
Progress:
I have done two sessions of 25mgMinoQ72, symptoms have settled down to the point I have felt TOO GOOD on the afternoon/evening of the 3rd day.
So back to MinoQ48 tomorrow. (I had Mino yesterday AM Nov 1st) I am just tired/low energy these two days, no pain or achiness...with less today compared to yesterday.
I am wondering if I could now increase to 50 mg? And rock a few times between the 25 and 50mg? Are these decrease in my symptoms enough to warrant trying the increase now? I know I can tolerate more than I have experienced these last 3-4 days.
Thanks Again!
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
| Status: |
Offline
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Posted: Sat Nov 3rd, 2007 02:49 |
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Heather, thank you for the update.
According to your signature line you have been on Mino 25mg 3 weeks and indicate your symptoms are minimal. According to the PHASE 1 DOCUMENT an increase in Mino is due. "Rocking back and forth" with dosages is not the recommended approach unless symptoms become intolerable after using all other methods for control.
Sometimes staying at one dose for too long can also cause in increase in symptoms. Since Phase I is a training ground for your to become well versed in assessing your symptoms and a learning to manage your immunopathology you are well on your way.
Take care and let us know how you are doing, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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HeatherK
Member in Phase 2
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Posted: Sat Nov 10th, 2007 23:36 |
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40 mg Benicar Q6 on Nov 3, 4, 5, 6th Q4 on Nov 7, Q6 on Nov 8th, Q4 on Nov 9, 10th............Schedule: Q6 5am, 11am,5pm,11pm Q4 as needed
50mgMinocyclineQ48 Start date Nov 3rd
Symptoms experienced this week: Fatigue, light head, brain fog, chills, sore gums , sinuses, and lymph nodes on neck. Emotional/anxiety herx, crying spells, photosensitive ---the worst yet these past 2 days. I am using 10% NOirs inside house with less than 30 lux light. and 2% on computer that is dimmed and setup with black background and white lettering. Still after abt 5 minutes I begin to feel slight nausea. Could this be caused by the unseen flickering?? I am OK watching a small dimmed tv screen from 8 feet away with 2% NOirs. I am spending more time in the DARK to settle these light reaction symptoms, and abt 80 % of my awake hours on the couch.
Fatigue has lessened as week progressed, but photosensitivity increased, so still on the couch with the light head/orthostatic intolerance.
I think the bowell was herxing this week too. For 2 days I had cramps/pain up the right side. Most movements were crampy this week, swinging from firm to loose.
Although I have had some dark/discouraging/lonely hours I keep reminding myself of what my body is getting RID OF. Yipee! I don't read the MP faithfully every day , but when I do, I am always feel confirmed that this IS working. There have been dark moments when all I want to do is step outside and feel the sun again, but reason has always prevailed.
Hold Fast
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
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Posted: Sun Nov 11th, 2007 04:32 |
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Thank you for the update Heather.
Getting used to a life style change is difficult for everyone at first. Your body is going through a lot in the beginning so your symptoms will be elevated including light sensitivity. Best to avoid excessive light for now to minimize your symptoms. Have you turned down the lighting on your Computer and TV; it will help quite a bit. The light sensitivity will get better as time goes along, it does with everyone.
You didn't mention what non MP meds you are using to palliate your symptoms. Please put them in your next post. Thanks.
Some members have had some relief from anxiety with the use of occasional low dose Valium. SEE: When and why should I use Valium?
You may want to ask your dr. for this to have on hand.
Have you had any symptoms you can relate to the increase of Mino?
Phase I is your training ground for learning to assess your symptoms and how they relate to dosage and timing and further...how to palliate those symptoms to keep them tolerable.
You may find this link helpful:
How can I tell if the MP is working for me?
Some ideas you can use to assess your progress and improvement while on the MP
Continue with rest, good nutrition and hydration, avoidance of sun and Vit D ingestion. Take good care of you.
Best Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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