The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Karen alumni progress
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Karen alumni progress |
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graceful7 Member in Phase 3
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avoiding Vit D 10/31/06, Noirs 11/8/06, comm benicar 40 mg q6h 11/12/06 mino 25 mg 11/27/06 I began levoxyl 125 mg, had gone to half that, as of Saturday none. Last night, 12/3 8 PM my fourth dose of mino. So far physical herx have been just enough to know they are there, generating hope. However the nuero herx border on intolerable at times, irritability/anxiety into agitation, and the depression, tamed by benicar,is back. Saturday was bad enough that I stopped the levoxyl altogether, thought that had solved it, but this afternoon is almost as bad. I've inquired of my doctor as to thyroid testing. Read re: nuero herxing and anxiety and depression. This morning physical symptoms were so mild I thought of going to 50 mg, but now I have my doubts. I've taken SSRI's in the past, but never anything for anxiety. Karen (I've already lost this message once trying to retrieve my signature line. so add it here) CFS,Meniere's,levoxly125mg, probiotics, VitD25-31,1.25-30, avoiding Vit D 10/31/06, Noirs 11/8/06, comm benicar 40 mg q6h 11/12/06, mino 25 mg q 48hrs 11/27/06 |
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Aussie Barb Research Team 
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Thanks Karen As you have reported, when assessing neuro herxing, fog, clarity, tiredness, moods etc are quite different to physical herxing which we may be more aware of, and are just as important as part of the assessment as the physical. first step: If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 40mg Q4H or 20mg Q2H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief.. and should I vary my Benicar schedule? My immunopathology symptoms are too strong. What should I do? .. Any time that your symptoms are going past tolerable: please check these precautions and the options one at a time to assess: do not hesitate to use any of the adjustments suitable to you. It all helps to gain experience as well. Tools to check: << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you. You may wish to discuss the Information in the FAQs with your Dr How can I control my anxiety and depression? What is a neuro response? When assessing neuro symptoms, fog, clarity, tiredness, moods etc are quite different to assessing physical herxing which we may be more aware of, and are just as important as part of the assessment as the physical. and this link re THYROID DISEASE and Th1 inflammation.. we recommend seeking Drs guidance re your Rx meds.. The signature line isnt visible when posting.. and is again after the text is posted.. Let us know if you have any questions. all best, Barb .... |
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graceful7 Member in Phase 3
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avoiding Vit D 10/31/06, Noirs 11/8/06, comm benicar 40 mg q6h 11/12/06 mino 25 mg 11/27/06 q 48 hr Two weeks on mino 25m g q 48 hrs. Whew and wow are the words. I am amazed both at the intensity of my nuero herx (depression and anxiety), and the fact that the 20 mg of benicar helped. Comparitively the physical (joint pain and burning) are not troublesome, so far one advil brings them to tolerable. Both Saturday and today I've had almost "good" days. Plan to extend this dose to 72 hours, to see what happens and because I have an event tomorrow night. Then 25 mg again and see. I would like to try 50mg before I take a break for Christmas. Dr. advised quitting the levoxyl and re-testing in a month. I asked for a diagnosis for insurance purposes and she said "fibromyalgia" so I've added that to my signature line. Thanks for everything- Karen on a good day |
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Aussie Barb Research Team
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Thank You Karen good to see you are managing well.. I'm eager to get well. How can I speed up my progress on the MP? all best, Barb ... |
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graceful7 Member in Phase 3
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avoiding Vit D 10/31/06, Noirs 11/8/06, comm benicar 40 mg q6h 11/12/06 mino 25 mg 11/27/06 q 48 hr comm mino 50 mg q 48 hr 12/16/06 Reporting after first two doses of mino at 50 mg. I waited until I didn't need advil or extra benicar for a week on the 25 mg. The 50 mg provoked just about as much reaction as the 25 mg did initially, increased joint pain, muscle spasms and cramping, anxiety- but again not more than one ibuprofen would take care of. I don't mention the fatigue or weakness because it feels like a given. Today, the second day of second dose I didn't need advil or extra benicar. I am pleased and hopeful. The plan is to take one more dose, five day break for Christmas, 2 doses and then a 3 day break for New Years. Then we'll see. Thanks. Karen |
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graceful7 Member in Phase 3
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avoiding Vit D 10/31/06, Noirs 11/8/06, comm benicar 40 mg q6h 11/12/06 mino 25 mg 11/27/06 q 48 hr comm mino 50 mg q 48 hr 12/16/06, 8th dose 50 mg 1/4/07 I did stick with the plan I outlined in my last post over the holidays, got through with nothing intolerable and able to meet extra demands. I would have reported that my herxing yesterday, after 7th dose of 50 mg, was worse yet, but I read back over the daily log that I am keeping and found that probably wasn't so. As usual it was the anxiety that was hardest to take- I did end up taking 220 mg of benicar in a 24 hr period. Things settled down just in time for the next dose of mino today at 4 PM. If the anxiety continues to be such an issue I will speak to my doctor at next visit. Although I don't post often, I log every day, and read on the site every day. Several times I've noticed a reference to after being on 100 mg mino, going back to 25 and ramping up more slowly, but I don't see that as part of Phase one. Is that just in some cases, or am I missing something? I was frightened when for a short time in the middle of the night I felt I could only partially see out of one eye? So grateful today to read some of why it has for some time been so painful to try to lose weight. I am enjoying no plans to (attempt to) diet or exercise at the beginning of this year. Thanks again for all your work. Karen |
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Dr Trevor Marshall Research Team 
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Karen, The moderators here all have nursing experience, and they know how to 'bend the rules' be creative (laid out in the printed phase 1 and phase 2/3 guides) to suit the particular needs of an individual. For example, since your anxiety is exacerbated by the immunopathology, and it might be good to cut back on the antibiotic dose for a while, or maybe vary around the type of antibiotic you will be using in Phase 2, in order to minimize problems from that anxiety. Other neuroses/psychoses that are exacerbated by the immunopathology include obsession, compulsion, paranoia and even bipolar tendencies. So it is nothing unusual. I am sure somebody will offer some suggestions, now that you have mentioned it as being a particular concern for you. Happy New Year to you and yours... |
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graceful7 Member in Phase 3
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avoiding Vit D 10/31/06, Noirs 11/8/06, comm benicar 40 mg q6h 11/12/06 mino 25 mg 11/27/06 q 48 hr comm mino 50 mg q 48 hr 12/16/06, 8th dose 50 mg 1/4/07 Well, now I "know" what a light flare is. Was at a party with only lamps in the corners, and special folks I hadn't seen in awhile so thought I could forego the Noirs. Stayed longer than I expected.... wow. Didn't sleep at all until after 4 AM, even with extra melatonin beginning at 11:30 pm, but also extreme emotional distress. Started taking benicar 20 mg every two hours, was getting better by evening the next day. Skipped the scheduled mino dose. Had to go out again but kept the noirs on this time, lay awake some last night but without the extreme emotions. Still vulnerable this morning. One question, when I've been taking 20 mg of benicar every two hours, can I go back up to 40 after two hours, then go four hours, or should I go four hours after 20 before I take 40? Which I what I did to be safe. Hope the question is clear. I've read the benicar posts repeatedly but am not clear on this. Karen |
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Dr Trevor Marshall Research Team
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Karen, According to the FDA NDA approval documents, the level at which Benicar becomes toxic is many times greater than that you are taking. Take the Benicar as Doc allows you. At all the dosages in your post you need have little fear of taking 'too much'. |
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graceful7 Member in Phase 3
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avoiding Vit D 10/31/06, Noirs 11/8/06, comm benicar 40 mg q6h 11/12/06 mino 25 mg 11/27/06 q 48 hr comm mino 50 mg q 48 hr 12/16/06, 11 cycles mino 50 mg 12/16- 1/12, begin mino 75 mg 1/14/07 Just took my second dose of mino 75 mg. Again very nervous about increasing, again not a problem so far. In fact, this time I have had only a few minutes of the anxiety. Increased response in upper respiratory, throat, sinus, etc. My most recent diagnosis is the Meneire's- started symptoms in July '05, had first major vertigo attack in January 06, another in Feb, and again in Sept. My fourth "attack" was last Thursday. But, it was definitely not as severe (never vomited) and really only kept me down one day. I am taking great encouragement from that. Maybe the benicar mitigated it? Maybe I'm improving already? Grateful, Karen |
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Aussie Barb Research Team
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Thank you Karen 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. Do not hesitate to use any of the adjustments suitable to you. Benicar eg.. Why am I dizzy and/or fainting? Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself. : Lay low, stay in bed, drink adequate fluids, eat salty foods and wait for the symptoms to wane. : do check with your Dr if necessary.. see posts above with suggestions and links.. Let us know if you have any questions.. all best, Barb ... |
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graceful7 Member in Phase 3
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avoiding Vit D 10/31/06, Noirs 11/8/06, comm benicar 40 mg q6h 11/12/06 mino 25 mg 11/27/06 q 48 hr comm mino 50 mg q 48 hr 12/16/06, 11 cycles mino 50 mg 12/16- 1/12, begin mino 75 mg 1/14/07 I wanted to report that I seem to have hit a tougher spot with the 3rd dose of 75 mg mino, esp. on the 2nd day. Managed with extra benicar, ibuprofen, and extending to 72 hrs for next dose. Now on 1st day of 4th dose, again, more herx than at previous doses. Hanging in there- Karen |
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graceful7 Member in Phase 3
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benicar 40 mg q6h mino 75 mg 1/14/07, melantonin, probiotics Writing from the deep freeze that is NE USA. I went back to 50 mg for three doses, because I had some commitments, resumed 75 mg on 2/1, will take fourth dose (9 total) today, seem to have adjusted to this dose. So expect to try 100 mg next week, but then will take a week off to visit my daughter who is having a medical procedure. Then I guess I'll be sending for my questionnaire. The herx have been pretty much the same, fatigue, lack of motivation, anxiety and depression (These have lessened, thankfully), joint pain. NO HEADACHE since the day I started benicar. Increased pain in shoulders and back, and sinus, throat and ears, increased vertigo - all areas of past involvement. I feel that I'm experiencing about exactly what I've been led to expect,so that is positive, although as I often say- saying you'll feel worse before you feel better and doing it are two very different things. It does really help to read the posts. Karen |
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jrfoutin Research Team 
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Karen, A week off of the MP? Might I recommend doing what others have done in a similar situation. Just stopping the MP for a week early in the MP could result in an uncomfortable/miserable immune response that just keeps on going like that little pink battery bunny with the cool sunglasses. The MP Benicar and Mino tend to pace the immune system and keep it in boundaries you can tolerate. Here are some ideas:
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Aussie Barb Research Team
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Karen I note that you are not posting frequently, and say... "expect to try 100 mg next week, but then will take a week off to visit my daughter who is having a medical procedure. Then I guess I'll be sending for my questionnaire." <<< time may be getting away by the next time you post... and that there is no date in your sig line with your D tests.. VitD25-31 As your initial 25-D was above 20ng/ml: It is recommended that you retest your 25D to make sure it is near or below the therapeutic level of 12ng/ml. There is no need to retest the more expensive 1,25-D.. How often should I test D levels? What are the target numbers? see this FAQ Where can I find phase two and three? for information re sending an email for the Questionnaire to fill and return so that you have plenty of time to read the Information. and when you are given feedback and access to the Information in the Phase 2/3 Forum - We then encourage you to begin a new progress report there to discuss the Staff recommendations as to which phase and which meds and dosing are most suitable to your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you.. Let us know if you have any questions. all best, Barb ... |
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graceful7 Member in Phase 3
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Thank you Janet and Barb- I've added the date for my initial vit D. My doctor wanted to wait four months to re-test, I will see her on March 5, and get the script then, and of course will not start phase II until I get the results. But I will send for the questionnaire because I am getting curiouser and curiouser. I had noticed, Janet, in other posts that you had cautioned about taking a break in phase one. I did not plan to stop the benicar. I will read the posts, I had wondered if dropping back was a better idea. Thanks again, Karen |
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graceful7 Member in Phase 3
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benicar 40 mg q6h mino 75 mg 1/14/07, melatonin, probiotics An update before I leave on my trip. I've read all the "colds that turned out to be herx" posts, but I still think I caught the cold/flu that was going around, for five days took extra benicar, painkillers and decongestants/antihistamine. I read the releveant posts which were reassuring, particularly when I was afraid I was getting a sinus infection. I stuck with the 75 mg mino, and today, second day without extra benicar or pain killer the herx seem mild enough that at this point I just plan to stay at this dose while I am away. I filled out the phase II questionnaire and have access to that info. It will probably be late March before I make the transition. I damaged my indoor, fitover Noirs, by cleaning them with dish detergent I guess. They are replacing them but of course it takes time. Meanwhile I am trying to manage with the outdoor fitovers and the indoor wraparounds, but I'm getting too much light, which results in insomnia for me. I'll be back on the first, hopefully beginning 100 mg mino. Karen |
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jrfoutin Research Team
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Karen, Yes, do continue with Benicar (keep plenty on hand) and some have dropped back some on the mino but continue that. You may find everything to be OK that way, and then again, you may find that your immune system has other plans and you need to work with it. Might ask where the nearest computer with Internet is so you can access moderator insights. It is so early in the MP in Ph1, that one can be in the MP far enough to start their immune system going but without the modulating influence of abx and some experience with understanding their own immune system signals, it can get dicy. That is why Ph1 vacations are really not advised if one can possibly avoid that scenario at all. Add in expected activities of the day and light challenges, one can step in quicksand without ever realizing it. Do give yourself time to rest in lower lux whenever possible. I hope the best for you--Janet |
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graceful7 Member in Phase 3
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Thank you, Janet,somehow I missed that breaks in phase 1 were not recommended. I do have access to the internet here. I think it's going to be okay, I've kept up with the 75 mg dosing, extending some. The last dose was rough, this one seems mild. I am laying low here since I am taking care of other adults who are also not feeling well. Karen |
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jrfoutin Research Team
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Karen, Most have found they prefer not taking a break too often, but keep the immune modulation going with either the same dose for the "vacation" time frame or a slight reduction in abx. As opposed to the typical "vacation" concept we all think of, if you are caring for other adults, then that sounds like all of you can hang out quietly in far more restful situations indoors (smile). Hope all is well Karen--Janet |
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graceful7 Member in Phase 3
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avoiding light and D, benicar 40 mg q 6 hr, begin mino 100 mg 2/28/2007 I'm back home, did all right on my non vacation staying on mino 75 mg, q 48 hrs. Started 100 mg as I was leaving, Wed, Feb. 28. Pretty intense herxing, but nothing new. Depression and anxiety were bad the next day, benicar helped. Joint and muscle pain and burning. When I lay or sit still and ask myself where exactly it hurts I have to say just about everywhere, though I'm most aware of elbows and knees. I had to hit the deck running and went all day on one nap though. Just took second dose. See my doctor on Monday, and expect to get my scripts for another D test, and phase II meds. Karen |
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Aussie Barb Research Team
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Thank you Karen There are detailed Information posts at the top of the Phase 2/3 Forum - We encourage you to begin a new progress report there in that forum to discuss the Staff recommendations as to which meds and dosing are most suitable to your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you.. Let us know there if you have any questions. Thanks, Barb ... |
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graceful7 Member in Phase 3
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beni 40 mg q 6hr, mino 100 mg q 48 hrs, melatonin, probiotics The adjustment to 100 mg mino seems to have gone more smoothly than the others, in fact in the last week or so I believe that I am feeling better. Still rough emotionally, but the physical herxing is quite tolerable. Got my D results today - 13. I was very happy, but then read that "you" really want them under 12. Do I keep on keeping on or try to be more diligent? I saw my doctor and we agreed on my phase 2 antibiotic and it is on order. So... I plan to start phase 2 the minute I get home from a commitment on the 24th unless something changes or I hear otherwise. One other question- most nights at some point I wake up and have to feel where my right arm is with my left because there is no feeling in it. (asleep) (I often sleep on my stomach with my arms overhead) Is this harmful, or potentially so? Thanks, at the moment I feel that I've turned a corner. Karen |
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Aussie Barb Research Team
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Thank you Karen Good to see your significant drop in 25D.. Continued diligent avoidance of Vitamin D is recommended for MP.. see The Importance of Reducing 25-D Can my Vitamin 25-D go too low? numbness in arms, hands, is a common immunopathology symptom.. Before you start taking your new abx: We encourage you to read the Information in the Phase 2/3 Forum and begin a new progress report there to discuss the Staff recommendations re meds and doses for your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you.. see you there, Barb ... |
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graceful7 Member in Phase 3
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Here is my progress report for six months on the MP. Six Months on MP Headaches – virtually none since beginning benicar – used to have debilitating headaches several times a month “Colds” Only one in six months – significant improvement Stopped thyroid medication in first month Vertigo attacks – lessened in severity None since April 1, which seemed to be connected to light exposure. Tinnitus has lessened significantly, notice it only initially after abx dose now Candida – improved Reflux – improved Weight is up 2-3 lbs, esp. since phase II. This is negative as I am significantly overweight. Sleep – about the same, still need 1-2 grams melatonin to sleep Symptoms which increased initially but have abated some: Anxiety Hot flashes, night sweats Light sensitivity Brain fog Heart palpitations Breathlessness Parasthesia That’s the good news. However I have to say that in terms of day to day functioning it’s still fair to say that I am worse than before I started, because of the increase in fatigue, muscle and joint pain, and depression. The fatigue and pain are clearly connected to herx. I do think that there has been an increase I what I can do each day after the initial difficult adjustment to the Phase II abx. I think that post exertional malaise now can be measured in hours rather than days. The continuing symptom that I find most difficult is what I call “flat-line” emotions. I have been really struggling with whether to take something for this. I had a doctor's appt. today and was hoping that she would tip the balance and she did. She wants me to try relaxation, biofeedback, etc, and perhaps some mild exercise if I can tolerate it. For those of you wondering about phase 2- the initial adjustment was quite difficult for me, the worst beginning a week in and lasting a week to 10 days. I am very glad that I heeded the advice about being cautious with the phase 2 meds, would not have wanted it to be a bit worse. But things have settled down nicely since then. Karen |
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graceful7 Member in Phase 3
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I'm a little late, but I want to post a TWO YEAR PROGRESS REPORT. It's easy to do it on December 30, because even my family was amazed at what I was able to do through the holidays this year. I think it's fair to say that I am back to functioning at least as well as before MP, with noted improvements. No headaches, no colds, no sinus infections, no vertigo. These things put me out of commission regularly, now there are no days that I just have to cancel. The fatigue and joint pain are dramatically improved. The reflux is only a problem when I eat sweets. My cholesterol is down 60 points, and I have lost 25 pounds. I've had to work at it, but before it didn't matter what I did. I seldom take even tylenol now, and seldom have to adjust my activities or lie down. I still do best with one or two short naps a day. Still have one or two nights a week with trouble sleeping even with melatonin. The light sensitivity is much improved from six months, but probably is still the most significant factor in deciding what I can or can't do. I was not able to be on the phase 2 med regularly (that is, not skipping or prolonging cycles) until I went on an antidepressant. It has made a huge difference,and I wish I had done that sooner. Perhaps the biggest thing for me is that although I lost my MP doctor to an accident, I am going to great lengths to find another provider, because it just doesn't make any sense to stop now if I don't have to. I have had many moments that I thought I couldn't go on, but it was always in the middle of a cycle when I couldn't do anything about it, and those moments have now added up to two plus years which is hard for me to believe. Karen Feb 2009 Update: Light exposure- low lux house. 10 % Noirs for computer and TV. Daily outings now, long sleeves and pants, hat, mostly 10% Noirs, which is a change. With Pittsburgh winter, unless the sun is shining, I can't see with 2%. Don't wear Noirs indoors anymore except for TV and computer. Well I had to drive to Akron OH (2+ hrs) and see a naturopath and a DO, but I've got my scripts for another year. I'll do phone consults with the naturopath in the meantime. I'm grateful. Couple rough days with increased phase 2, as always, esp toward the end -day 8 and 9 were "can't stand my life" days, and day 10 was "sure don't want to get off this couch" with joint pain and fatigue. But I did. Last week I shoveled the walks three times!! Unheard of. |
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BARNEY Moderator 
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Karen, Congratulations on your improvements on MP!!!! Keep up the good work. Here's to a Happy and Healthier New Year!! HANG IN THERE, WE WILL MAKE IT!!BARNEY  |
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graceful7 Member in Phase 3
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Alumni Update: MP Meds: 55 zith q 10 days, cycle 9 , 50 mino q 48 hrs. 37.5 clindy q 48 hrs. benicar 40 mg q 4-6 hrs. Non MP meds: Wellbutrin 200 mg daily, melatonin 2-3 mg daily, occasional tylenol Light exposure- low lux house. 10 % Noirs for computer and TV. Daily outings now, long sleeves and pants, hat. Still need the 2% noirs outside in the sun. I have been very busy with life, especially schoolwork, which tells the story. I took two full weeks of classes in early June. When I first thought about taking this program several years ago, before starting MP, I couldn't even think about sitting in a chair all day for two weeks. I did it. I cut way back on the abx hoping to avoid having to wear glasses. I regret that because I had to wear the glasses anyway, and I'm still working at getting back to the levels I was on. More living and learning. I almost certainly won't have to do two weeks in a row again. I get up earlier and go to bed later and never really stop all day. Do some gardening most days. All quite amazing. Depression still happens but rarely. NO vertigo. Very little reflux. Fatigue and muscle pain, in periods that I can manage. Am I really writing this? Yes I am. What more can I say? Karen |
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