The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > JRFoutin Milestone Markers
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > JRFoutin Milestone Markers |
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jrfoutin Research Team 
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For the sake of those not in Phase II or III forum, I'll post a summary note here from time to time. Today's note is a summary of herxes from Modified Phase II that may be of value to those wondering what a modified phase II might bring. Your herxes will be your own, but you might find some similarity, that's all. Started Modified Phase II on Thursday October 6, 2005 (link to my PhII thread only works for those in phase II or III). Ending December 28, 2005. Will start reg. Phase II tomorrow or Saturday, whenever I can get my PhII prescription filled. My ModPhII General Overview I considered all my ModPhII herxes tolerable and wouldn't move from one dosing tier to the other until herxing waned. Toward the end of ModPhII, I did 3 days between ModPhII ABx dosing instead of standard 2 and did get some herxing on 3rd day, often neuro. Also experimented with dropping standard 40mg/Q8h benicar to 20mg every 5-6h during day with one 40mg for a solid 8h block of sleep at night for increased herx at the end of a tier or step up when herxing had waned on full 40mg/Q8h (goal: kill all possible bacteria at each level before moving on). Never felt the need to take pain meds but we have them in the house just in case. Only added plain yogurt probiotic every morning. Followed light & food guidelines with some human error, no doubt. Tried to do 8hrs unbroken sleep every night unless I had sleep disturbance herxing. Rested & napped during the day when I felt like it. Valued visits with my doctor. From a list of herxes posted every other day to every third day, I totalled the number of times a herx was listed. Then sorted all herxes into body system categories, for types of herxes and number of events posted:
Most frequent herxes:
"One major paradigm shift from earliest assessment of my pre-MP health: Initially, I thought I wasn't so sick. Now, I'm OK with ample evidence that pretty much everything was infected and much of it still needs repair (smile). I'm also quite grateful for the rather constant mental clarity at this time and little bursts of energy I get between herxing." ______________________ P.S. Don't be fooled by above list of herxes into thinking they last all the time or they happened all at once. This isn't the case. It has been VERY reasonably paced. Also, the MarshallProtocol works. (Feel free to quote me.) I can tell I'm getting well because my brain function is better and I feel better between the herxes. I have no doubts. As always, deepest gratitude to Dr & Mrs Marshall for your discovery and for sharing it. Big thank you's to moderators Aussie Barb (mwa!), Meg, Belinda and Lottie. Thank you muchly to all others on the MP for sharing your thoughts and feelings in posts and PMs. I am learning from all of you. Last edited on Thu Dec 29th, 2005 08:00 by jrfoutin |
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sunflower Member in Phase 2/3 
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janet, love your new avatar  , and thank you so much for keeping us up to speed with your progress. so happy you are coming along so well, and the encouragement is always welcome. God's blessing for the new year...sun |
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Alayne Member in Phase 3 
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Thanks so much for your update, Janet! I'm thrilled that you're doing so well and truly progressing! Just hearing you say that your brain's clearing up gives me renewed hope, seeing as how that's turned into my main "grumble".  Funny though, isn't it, that your posts always sound clear, concise, and coherent? And those of others here. I doubt "outside readers" easily believe that our brains are even remotely compromised. All the best for continued strength and progress in 2006! -Alayne |
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jrfoutin Research Team
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Ah yes, that's the modern miracle of editing on a computer. You'll see edit notations on my posts a lot because I come back and edit often. My biggest problem is I doubt the MP will cure my long winded-ness (smile). Last edited on Sat Dec 31st, 2005 03:59 by jrfoutin |
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jrfoutin Research Team
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I have been slothful about this little forum and my dear friend suggested today I leave the meds to Ph2-3 forum and post in both forums as others do. My big goal was to post summary statements here per Ph2, and then Ph3, but I got busy with a few life challenges beyond the MP in Ph2 and have not focused on a summary statement kind of thing here as I had planned. Please pardon. That said, here's some from my Ph2-3 thread today: _____________________ Ate 2 small brownies yesterday and within a very short time it crashed me out. I ended up taking a nap because I couldn't keep my eyes open (something I've not done for quite some time). Hmmm. Won't do that again! Betweener 20mg precautionary for light exposure today. For the most part, I've noticed I'm starting to feel better more of the time. Some right groin itch off an on. Little aches in R-kidney or R-hip are so fleeting/intermittant and low, they are barely worth mentioning. Good news! I was rushing about getting last minute tasks taken care of this morning and about 1/2 way RUNNING UP the stairs I realized what I was doing and noticed also I was not winded or exhausted. I just sort of said "woohoo!" to myself and kept on going. This is huge for me, so far away from where I started the MP. I sat in well lit environment for most of the day -- bright overhead heat lamps it looked and felt like, and bright window in restaurant. Lots of driving around town, and then spending some time in well lit parent's home. I also bustled about moving tables and chairs, serving and helping family, then sat on the floor with grandchild to feed him, and then got up with minimal problem (I haven't been able to sit on the floor for years -- pain and not being able to get back up by myself). This was a big, big deal today for me. These are huge recent changes. Things I couldn't do before when it was all I could do to get to an event and just sit while others bustled about, just a year ago. This is huge for me. Oh, after the party, I went shopping, and now I've got to finish up getting ready for a trade show this week that my work is going to. So you see, I still have energy to burn. Thank you to ARF and good moderators who got me here! And hooray! another slam dunk showing the MP works!!!! |
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jrfoutin Research Team
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(to question in Ph3 thread as where I was before MP...) And yes, I was so wasted before the MP that I had to have my daughter come and help me clean house because I just couldn't do much more than sit. I couldn't lean over to do much cleaning, and there certainly wasn't any getting down on the floor unless a fork lift was nearby to help me get up. I crippled up from a chair and it had to take quite a few bent over steps before the pain would let me walk upright. I felt like my body was stuck in old age mode. I couldn't go up and down stairs without a lot of work (had to plan around when I could get up stairs and I don't think I had been downstairs for a couple of years except for a rare, rare occasion). Any exertion left me wiped out. I had to take a nap just so I could go to a doctor appointment. So sitting on the floor and running up a flight of stairs at 18 mos into the MP is a big deal. And I just --did-- them. They just were normal. MP 1Y 189D | P3 206D ABx+Beni: Cycle 5, Day 1 ABx @ 7pm, Beni40mg Q8H.
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jrfoutin Research Team
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MP 1Y 191D | P3 208D ABx+Beni: Cycle 5, Day 3 ABx @ 7pm, Beni40mg Q8H. Sat in a not-so-good old wooden chair doing repetitive production tasks yesterday and by end of day my back around R-kidney hurt a lot (5-6) by end of production task. This morning felt like something was being mechanically re-arranged in the soft organ area of the R-kidney (not bones). Things literally moved around once or twice. Interesting. No pain by this evening and ran around town getting things mailed without a twinge of pain. Interesting again. One little tweet of tinnitus this evening just after taking ABX. I'm really having to pay close attention to tinnitus as it is just so brief and fleeting and infrequent now. Really felt good today even though I have been pushing things and staying up late for a couple of weeks now (work and family). A little discouraged at not making some deadlines, but realized it was a lot with recent family circumstances. Good son helped. The other good son emailed and it sounded like he had been dodging exploding things in Bagdad (near as husband and I can tell from son not telling us where he's at or what he's doing). Kind of a horrid way to celebrate one's birthday. ._-~*~-_. ._-~*~-_. ._-~*~-_.._-~*~-_. ._-~*~-_. ._-~*~-_. Feb 20th, 2007 I've been away from the board a few days in order to spend time with my guys. Today, we spent my husband's day off just hanging out, went to a few large dept stores and walked around looking at things, daydreaming about home improvements and looking at goofy things to buy, going out to eat, then to a movie. This was the 3rd day in a row I've put in a full day of out and about. I was calm and we laughed and visited easily. My son noticed. He said "this is the first day since I can remember that we have been like a normal family." He meant that as a sincere compliment. I realized how much me being sick and unble to do these little kind of things together had sucked the life out of our family. We all kind of nodded. I reminded them to notice I was getting well and that is why we could do these things now. When we got home later, I pointed out the difference again to my DH, that it had been a very very long time now since I was so tired I had to sleep through most of the day. He had noticed. The ability to keep on going and not be tired is wonderful. Somehow, when one gets past that turning point moment then there isn't that constant question about how long any more. It turns into more: "this is sooooo incredible, I wonder what more time on the MP would net? I'm going to keep going, who cares how long it takes!!!!" February 24th 07 I've been out playing today. Problem with getting well and all is that one likes to enjoy it. (sigh) Fixed breakfast for the guys, got my hair done, went shopping, ate out, unloaded groceries, mailed some stuff and just got back from the movies. Now that I've got zip-pop-and-go, the guys want to go play. WOW! 18 months ago was such a different scenario! Thank you MP!!!!!--Janet |
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jrfoutin Research Team
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MP 1Y 231D | P3 248D Ph3 antibiotics +Benicar, Crancaps and extra liquid continue. The last 4 days have been long and very fullfilling, and I got busy and didn't post on my post. I just about declared myself totally well and past all disease symptoms... (I'm not that rash, but WOW have I felt good!). Have prepped garden area in dark early mornings, trimmed hedges and rose bushes, pruned one of one fruit tree and started on another but the sun was coming up so that was the end of the weekend. Got housekeeping, laundry and kitchen worked on, as well as a few other really fun tasks I've quite enjoyed. Beautiful fun illustrations mostly. Went to the mall Saturday with my son and walked all over the place. We sat down when his heel was sore (fencing injury.. and likely his Th1 future entry). Last time I went to this mall to go to the movies about 9 months ago it seemed so big, such a long way to walk. Now it seemed rather doable. We went early and walked around all the lower level and then all the upper level, No problem. Very interesting. Did treadmill again for 3 of last 4 days. I'm not going as fast or as long as where I left off, but moderate moving around is all I'm really after so I'm not totally stuck to a chair all day. I'm sure if someone punched me in the back I probably would register some kidney pain, but even pressing firmly results in no pain. I will continue the crancaps (D-mannose) for a while longer to make sure no extra happy little resistant rods are sticking to my kidney and waiting for an opportune moment to zap me again. Of course I am still overweight and I still have lymph lumps, but all of that seems to be doing what it will in its own time, slowly but surely. I still want my NoIRs on when driving in bright light. On bright Spring lighting on Saturday, I quickly sandwiched the clip ons under the darkest NoIRs for greater "ahhhhh" with eyes outdoors, but I just don't use NoIRs much in most indoor areas except for long stretches under hefty combined lights at church on Sundays. Main Ph3 combo will continue even though I have minimal responses. It has been quite a while since I felt this healthy on a regular basis. A little achy pain here or there once in a while is plenty fine with me! |
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Aunt Diana Moderator 
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That's wonderful news, Janet. Starting to live a normal life again must be almost unbelievable, I would imagine. In like, pinching oneself to make sure it's real. You have no where to go but UP.. I'm so happy for you...and your family. |
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Jeannine Board Staff 
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Congrats on your progress!! It is so amazing to be getting our lives back! Jeannine  |
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vwitcher Member in Phase 2/3
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Janet, reading your progress is really inspiring, and gives me (and 4wd) hope! To think you have come this far in 18 months is quite amazing. Although I am not officially diagnosed with anything, many of your symptoms (hip pain, in particular) sound familiar to me. I can think of several things I could do five years ago that I couldn't think of doing right now...but I plan to do them again! Your sharing outings with your family makes me a little winsome. We also have two good sons, but we haven't done much of this since 4wd got sick a little over a year ago. He just doesn't feel like doing anything, even when the pain is under control. But we look forward to things getting better...we plan to walk off into the sunset together (pain free). Thanks so much for your support and advice to me and hubby 4wd. "You ...light up my life...you give me hope...to carry on"! |
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jrfoutin Research Team
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Thank you so much all. Vwitcher, you and your 4WD are just starting. I see your struggles. 2 years ago, before I was on the MP, I was quite happy to not do anything I didn't absolutely have to. I had to have someone else help me with housekeeping because I just couldn't do that. I was really a mess physically, mentally, emotionally etc. and sleeping a lot of the time to deal with daily pain. I made excuses about not going upstairs or down unless I absolutely had to, and then I would be out of breath and worn for the workout (one flight of stairs!). I was just so glad to find the MP. So glad that the science had been presented. As you can imagine, I am quite grateful to have my life. I'm not all the way well so don't misunderstand, but I'm sooo getting there (and not moving in the other direction) and that is all that matters now. I would say that my "worst" days now almost compare to my "best" days early in the MP. That is a huge change in a short period of time. Of course, my best days now make me feel wonderful. I'm grateful to have this board to say it too. I know I sound like a broken record to family and friends, but I can't help but say WOW! At least on this board as people start and face difficult days, it might help. I remember leaning for strength from the posts of those who were just a couple of paces further down the MP road when it was tough for me.--JRF |
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ShrnHml Member in Phase 2/3 
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Janet.........that is one joyful report. I can feel your new found satisfaction and am joyful with you. One question: What are crancaps? ........Sharon |
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jrfoutin Research Team
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Sharon, thank you. My recent E. coli kidney issue is currently being addressed with the MP and what I have referred to as "crancaps" but more accurately is D-mannose. D-Mannose is a simple sugar found in cranberries and some other plants. D-Mannose does not kill E. coli, but it is fairly quickly removed from the body and the D-mannose adheres to the E. coli lectins, making it more difficult for E. coli to stick to the body (E. coli as a flushable entity). Those who do not have an E. coli problem do not need to use options to solve that problem (duh). My Dr did blood & urine tests, with kidney imaging to arrive at the E. coli conclusion. I have not yet had a follow-up and that alone cannot determine just how much of the problem has been solved by D-Mannose or combined D-Mannose and my own body on the MP. The jury is still out on whether I am completely done with kidney Sx, how much longer D-mannose is required or if another option must be applied with D-mannose and the MP, but I appreciate at least trying the "flyswatter" options before "cannons" designed to kill E. coli bacteria directly (both flyswatter and cannon options can be used with the MP). The fact I had such a boost is encouraging, but not all "for" or "against" D-mannose. The MP and extra benicar has been used as well. Those that can may see Ph3 posts. Hope that helps--Janet |
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jrfoutin Research Team
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MP 1Y 239D | P3 256D Ph3abx+Beni: Cycle 10, Day 1 of 10. ABx @ 7pm, Beni40mg Q8H. Crancaps continue. Notes: Continuing D-mannose round the clock, but have reduced it to one instead of 2 about every 4 hours (except 8hr block sleep time). This cycle I'll be doing q72h MP abx dosing variation.
Otherwise, really feeling good physical/mental/emotional. Planning to do evening meeting tonight. Haven't been to an evening meeting in a long time as end of day I have been too exhausted for many years. Life is good, thank you to those who have helped me get here! Last edited on Wed Mar 28th, 2007 00:41 by jrfoutin |
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jrfoutin Research Team
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Someone suggested this might be of value to others to read from a recent dialog with Toni in my Ph2-3 progress report: Thanks Toni, The interesting comparison is that I did housekeeping at my house earlier in the day, then some hefty scrubbing for a couple of hours (involving some jumps from chair to floor and back again), then whisked about a large club store, ate with the guys, then loaded and unloaded car, put everything away and felt no significant fatigue following. Before the MP, I would hang on the side of the cart DH was pushing (I really didn't have the energy to push), and complain if we were going too fast. Then I would get to the back of the store and wonder if I would have enough energy to get to the checkout alive. DH would want to look at other things but I would just say no, we had to get home because I was too tired. The store seemed so big and confusing to me then. Resting a little in the car on the way home, and then I would load only the perishables into the refrigerator and then go take a nap before I could put the rest away. Also, for the first 6 months of the MP, it was enough for me to just make out a grocery list for others to go fill. I didn't have the energy to shop. So doing what I did on Saturday was huge... Such a difference! Per church, I've found a place I compromise and wear dark glasses for OK comfort and for DH/son's preferences too, but one room during one time frame there just aren't any dark corners and the low bays of fluorescents are intense. I used to wonder why family came home cranky and exhausted -- me mostly, I would have to take a nap after church all the time (not anymore). I used to think "how odd--all we did was sit most the time." Now I know it was sitting in bright lights (windows and other lighting) and that explained everything. I actually was wearing NoIRs for about 5+ months pre-MP, and the time I started wearing NoIRs was about 2 months after starting my club store membership. So I was wearing NoIRs then, but not on the MP and still quite exhausted. I don't wear NoIRs as I shop now. Haven't felt tired during or after, either. Outside, I definitely wear NoIRs still. Church still is too bright to go without eye protection most of the meeting time, and it is considerably brighter. After the MP, the next big hurdle for mankind will be to develop a source of light that is MP compatible, energy efficient, doesn't need changing all the time, and won't ruin the environment (LOL). --JRF August 2007: I soooo remember not wanting to stand for any length of time. Last night I just did a round of indoor miniature golf with my guys and stood the whole time and thought about it and how easy it was to just stand and not worry I needed to sit all the time. That was a very long time to just stand -- waiting for my turn and laughing and playing with the guys. I didn't feel the urgent need to sit down once! September 2007: I had been doing a lot of standing lately... something I have avoided doing for several years even before the MP. But I was sort of standing in line someplace when it dawned on me that I had been up and walking around and doing a lot of standing but I was still feeling very steady and comfortable. My hips/knees quit hurting a while ago so it wasn't so much the lack of pain but it was this other sense that I could stand for long periods of time and be quite solid/sure. Kind of like it was natural and right to be standing now, rather than just sitting all the time. Just another one of those "ah-ha" moments via the MP. --Janet |
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jrfoutin Research Team
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My days have been quite busy but I think of you all as I'm tasking elsewhere during a family need time. Responses: Skin still broken, but center of activity moving around. Forehead is clearing but around mouth and left back hairline more now, as well as back of left thigh. R-kidney (1) hints around the edges of something going on the last couple of days, but nothing very much or very constant. Really feeling quite healthy otherwise. Probably time to increase something next week if things are not too rocky with current family challenges. My brother from out of state has noticed I am losing weight. He said I looked 10 years younger than the last time he saw me several months ago when he was up to help with my father's illness. He thought I looked younger than him (I'm oldest). Those who see me every day miss the subtle changes. I'm just glad I feel so good. Feeling so much better helps currently with all the physical labor in two households (I was recently surprised how much I could do in a short period of time as I haven't been really exercising), driving freeways to get to a sibling's home... sometimes a two round trips in a day, working with a high needs child or two or three, and still working on work and helping with my family when I can. Brother was still mulling over the whole good bacteria/bad bacteria thing... for me an extension of the probiotics discussion but I don't know if he's been reading it. I just said I quit probiotics a long while ago during ph2 of my MP journey. I don't miss them or the financial investment. Deep gratitude for the Marshall Protocol. |
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jrfoutin Research Team
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I'm still in Ph3 abx, and noticing some response still of course, but it has been a very, very long time since I had any edema in my legs, and my limp-along right kidney seems to be quietly humming along now without much complaint. I work long days now. Sometimes with lots of running around town, jumping in and out of the car and moving from one location to another. All so much different from my arthritic hobble from years before. I don't even think about taking a nap or having to rest. Posted: Mon Aug 15th, 2005 09:40, when I started the MP: http://tinyurl.com/22rp6v (look for long bullet list). It took me a long time to write that post too as you can see the "edited by" line. It used to take me hours to post. (LOL... so different now!) In any case, I like to look back on that list and compare where I am at now. I still have lumps and bumps, skin breaks here and there for immunopathology and I have to lose about half of my weight but I am confident those items that hang on for long periods of time will eventually fall away just like the others have. In the mean time, I have slept peacefully without terrible dreams, I stand and walk without crippling around. I don't need naps and my brain is clear. Most of all, I really don't think about illness every day or whether I might die soon because I was going downhill so fast (I felt that way prior to the MP). Being free of that ominous feeling is a real gift. Happy New Year to all.--Janet |
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Joyful Board Staff 
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Janet, you have come such a long way... I am inspired by your persistance and willingness to embrace some temporary difficulties in order to live a longer, healthier life. Thanks. |
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jrfoutin Research Team
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Thank you Joyful, I have to admit my initial motivation to get on the MP was more to stop the diseased downhill ride to a speedy death in my 50's, but now I'm starting to focus on all the possibilities of enjoying my life. I wasn't expecting to be feeling so happy about most everything, but that has been a very pleasant added bonus. I've learned that a very good marker of wellness is fuller enjoyment of life. Best to all--Janet May 2008: Before there was an MP to choose, my first big "U-is-VERY-broken" clue was non-stop bleeding, volume escalating over time. When I finally worked through medical standard processes to arrive at an OB/GYN specialist, the typical expectation was to remove the organ if bleeding didn't respond to hormone therapy (mine didn't) and without organ removal, expect the problem to escalate into hemorrhage, risking bleeding to death (by that time I was already accepting that possibility). That came just before the sales pitch that introduced a nice new same-day surgery to remove the endometrium lining with a blast of heat. Later that same year my joints, other organs, lungs and lymph nodes gave their notice. Nobody in the OB/GYN office or Sarc/Pulm dx team connected details. Prepared at the time with the standard societal understanding of medicine, I accepted the compartmentalized paradigm. Only until I got to the MP, many years later, was there finally a moment of "ah-ha" about the systemic nature of Th1. |
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Deb Grabetz Member in Phase 3 
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Joyful wrote: Janet, you have come such a long way... I am inspired by your persistance and willingness to embrace some temporary difficulties in order to live a longer, healthier life. Thanks. Deb responded:
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jrfoutin Research Team
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MP Ph3 continued Light explosure: Minimal, as usual. Symptoms: Sand continues (7-8, although I won't call ER... sigh, but it was really intense, almost raining sand some days), sand pile with lots of scratch-removed clogs everywhere, mostly scalp. Not flaky dandruff, the sand looks the same from scalp as it does scratched from other locations. One day of really awful extra greasy hair during cycle peak even after washing it that morning. Weird. Makes me wonder if my skin was clogged all this time and now dumping clogs. Hair is starting to be shiny not dull. Infrequent, short, and very intermittant tinnitis during cycle peak days again (1). Yesterday (end of day 1 in cycle) evening chest pressure by heart (2-3), took extra Benicar and rested, today fine. Comments: Was able to help when mother had minor surgery Th and next day. Getting most work tasks done, but still not all. Seem to be feeling thinner around waist and chin (double chin going away). March: Fewer muscle twitches clustering lumps and bumps under skin in limbs and abdomen/back (some small as a button, others almost the size of a small fist) are getting softer and/or smaller. Prominent lump in my left top forearm is almost flat now and quite reduced in size. I can still feel it there, but it has changed a LOT. That's a big difference in just a few weeks and during the last 2+ years on MP it just didn't change much. Now: Visible lump mid-left top forearm is getting softer, smaller and going down. It's almost gone and barely visible. It used to poke up like I had a good-sized marble under my skin. May 08: I can say that Sarc in the bones is quite painful, having been there. Tonight, I cut out a pattern for a suit I was building for my son, and cut it out on the floor like I had done years before. I was able to get up without pain or difficulty. I actually like to show people how I can do this, and I tell them how that was just impossible for me 3 years ago. |
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jrfoutin Research Team
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 MP Ph3 continued Light explosure: Minimal, typically, except for during move this month, and most recently when I've had to do all aspects of setting up house and home and not being sure enough of my new city and general territory, or being too new to the area to find my way home at night. So the day has had to be the time I did a lot of tasks. I stay covered with long thick clothes and wear my darkest NoIRs outside, but I am not as concerned about light from time to time now as I was in the early MP when even a little exposure would have serious consequences. Still, erring on the side of caution, light for the majority of time remains comfortably appropriate for the MP. I just thought that it was worth mentioning that I'm not yet at the year 3 marker for the MP. However, except for a very few minor reminders, my health is remarkable. LONG WAIT FOR WEIGHT I've noticed my figure has finally started to change from rotund toward what I remember more in my 30's. It will be interesting to find a scale at the end of summer to see exactly how much I've really lost. But clothes that had been tight are now loose fitting, and even recently-purchased pants that were snug fit just weeks ago are not snug anymore. To some who have never been ill, changing one's figure might have been something easily done by changing diet or exercising more. But I tried to do that when I was ill and the results were difficult, abysmal and frustrating. FEET Shoes that were once snug are also finding my feet quite slender and well formed, even though the skin damaged spots from edema over the last 3 years still reminds me they were huge before the MP, and much of the early MP. HANDS My hands and fingers are better defined and fingers are more slender. The only ring I wear now is the one passed down from my grandmother. It no longer is snug and the gem mounting side often wants to twirl around my finger. NECK My neck is starting to have a regular "neck" shape rather than the Michelin tire-man neck I've sported for a decade or so. I'm watching the rest of me with great interest as it makes similar changes. ENERGY I work a full day without being tired. Moving and setting up house and home and getting all the particulars taken care of has been a challenge, and would be for any well person but for me to do these tasks day after day, it has been a wonderful adventure into just what I could do. I'll say it again: It has just been wonderful. RISING ON OCCASION Weeding and planting while kneeling and sitting down on the ground is new this year. Although I have been able to get up from a floor sitting position for about a year now, I still haven't tried it very often. This morning I mowed my lawn and later put in 2 flats of annuals while getting some watering done on the dry patch of grass around my new home. I had to move the sprinkler every few minutes while planting and that meant up and down -- a lot! Toward the end of the planting time frame it wasn't quite so easy, but I was still able to get up and down from a ground position. To others watching me do simple standard yard tasks (recently a LOT of heavy lifting tasks too!) this might not seem like much if they never knew my history. However, for me it means I have more of my life back, more quality of life than I have had for a decade or so when I wasn't able to enjoy this in my life. EYES I've noticed a lift in the light sensitivity recently too. I was --REALLY-- light sensitive in the early MP, wearing dark lenses even in the dark and at night. I had to wear a sleep mask at night because even light from a mobile phone recharger would be too bright. Now, I wear NoIRs outside from an abundance of caution, not because I have to. Life is very good even though immunopathology is still evident. However, IP's are not overpowering or constant and most days I have no abrupt reminders that I am or was once living in a very sick body. Sorry for the long post, but information like this just needs to be shared. Choose well, get well!--Janet |
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Joyful Board Staff
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Janet, your recovery update is so encouraging!!! Thanks for taking the time out from your new home-making to let us know!!! |
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Deb Grabetz Member in Phase 3
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Yes, Janet wonderful news...When I started MP you were going through a lot of IP yourself but always a role model for those of us starting out...encouraging us "newbies" along the way...I find it such awesome news that you were out cutting the grass, wow! Continued wellness to you!  Deb |
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eClaire Member in Phase 2 
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Oh, never, never apologize for such a wonderful update, regardless of length. It is updates like this that keep me carrying on. I am so happy for you for the quality of life you are now experiencing. I hope one day to join you in being able to say just that about my life. Blessings to you Janet, Claire |
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jrfoutin Research Team
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Symptoms: Very little to report. A few days I was worn out the last couple of months (but hey, lugging/unlugging a truck on either ends of a 12hr drive in a buckboard one-way rental truck would do anybody in). Comments: Removing stress from the daily menu seems to have been good for me. I really enjoy my new environment, too. Continued weight loss. The michelin tire around my neck seems to have deflated significantly. After I drop more, then I'll do some before/after shots, but I was really quite overweight so it will take time. I'm just glad right now to see the direction does change eventually. |
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expate Member in Phase 3 
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Regarding the Michelin tire 'round the neck... my daughter carries her weight this way (as does a staff assistant in my office who is diabetic, etc. etc.... I also know my daughter has high cortisol levels, and that stress is a trigger for her seizures. I see some of the physical markers for Cushing's Syndrome and I wonder... th1, etc. Any thoughts? Odette |
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Dr Trevor Marshall Research Team 
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Odette, You might like to read about Matt's myoclonal convulsions in Amy's Bacteriality at URL http://bacteriality.com/2007/10/28/interview6/ |
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expate Member in Phase 3
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Thanks, I'll definitely check it out. oh |
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jrfoutin Research Team
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Expate, Recent NPR health focus on stress/cortisol with a connection I found interesting. The target goal of researchers was to create some kind of drug to give stressed out folks but that is a palliation marketing issue we can skip over  . Still, an interesting connection to your post and looking back, stress was a fairly constant companion of mine for decades.Best to you Expate--Janet |
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expate Member in Phase 3
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Thanks for the link. Interesting. Odette |
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jrfoutin Research Team
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Something fun for those that wonder what the MP looks like after 3 years of not losing weight.... and then it starts to happen. Do compare now with avatar, notice double chin is going away. Not full body slim down yet -- since I was packing plenty it will take a while. But I have a little more faith in the process now. Just that the transition to this point in time is fun so I thought I would post. I am enjoying it.  also... straight on view  I took these a couple of days ago. Thanking all on MP that have seen me through to now--Janet |
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Joyful Board Staff
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Congrats Janet! I know you have been looking forward to this day... |
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jrfoutin Research Team
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I'm not there yet... one might get the wrong impression from your post so I'll clarify so no one misunderstands. I'm still transitioning. This is simply a happy marker of progress along the way and useful for those who might feel the MP isn't getting all the job done at the 3 year point. It took me longer to get a bachelor's degree, so I see it more like a junior year snapshot. For example, if obesity had been on a recent poster or presentation, I would have shown no improvement -- maybe even beyond 2nd year if I had been at the 2-3/4 year mark when the totals were tabulated. At the end of the 2nd year, beginning of 3rd is when something actually started to happen there for me. My weight never deviated more than 1 lb at the doctor's office scales before that (I never weighed anywhere else). As you know already, time on the marathon task is required for the MP. I've a long way to go yet and plan on post graduate work beyond senior year (wink), encouraged by the minor and major improvements I was able to note before this one started. Best to you Joyful--Janet October summary: August 9, 2005: P1 Benicar only August 23, 2005: P1 added Mino October 6, 2005: ModP2 December 31, 2005: P2 July 11, 2006: P3 August 2-25, 2007: MP vacation August 26, 2007 to Nov 29 2007: P3 August 2-Oct 9, 2008: MP vacation Oct 9: P3, Benicar only to restart MP Ph3, 3Y 62D on MP| Beni40mg q8h | Restart Benicar Light exposure: Low lux, minimal. Symptoms: During vacation some chest tightness during first week, then nothing much after that save a few tinnitus tweets. Comments: Interesting learning transition. I seem to have a lot more energy and health than many close to my age. Th1 is everywhere in stressed middle aged adults it seems. Continued weight loss. Benchmark somewhat at end Sept/first Oct seen in Alumni forum, but before/after still expected some time in the future. Treadmill usually about 4-6 days a week a little over 1.5 miles at about 2.5-3.0 speeds. Quite a bit of energy, sleep well and have a fairly good eat/sleep/work schedule. Enjoying family when I can. Insurance and my income clashed on continuing Olmesartan the same way as in the past. It took over a month to get a 2 mo supply through the new script process with doctor and mail shipment. But I'm on my way again. |
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Deb Grabetz Member in Phase 3
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Janet, Your analogy of the MP to achieving a degree is very appropriate and I will remember this when *wanting to hurry things along*! We devote all kinds of personal time to many things in our lifetimes... Personally, I spent many years devoted to advancing my career, nurtured my three children for over 25 years to now enjoy the wonderful adults they have become, slowly, renovated our farmhouse for close to 10 years until it was finished...we nurture relationships and friendships...and now I am focused on doing something so very important for my future---- my health! Yes, I can be patient with this *project* also! Thank you for reminding us how time spent on the MP journey, will be the best time, we ever give back to ourselves!!! Last edited on Sat Oct 4th, 2008 15:11 by Deb Grabetz |
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juneejohnson Health Professional
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Janet, I have just read your short bio. You look wonderful! At least 20 years younger. Congrats, At times when I first started the MP the pain was awful, with RSD and then getting a frozen shoulder, UGH! I am so glad that I have stuck with it. I really didn't have a choice. I had tried everything. This is the only thing that really works. My hat is off to Dr. Marshall he has saved our lives and gave us new hope for the future of medicine. Juneejohnson |
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BARNEY Moderator 
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Janet, Lookin good!!!!!!!!!!! HANG IN THERE, WE WILL MAKE IT!!!!!!BARNEY |
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JanEE Member in Phase 3 
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Hi Janet, I am positively thrilled with your improvements, not only the internal but visual also. It's not often we get to see results as they are mostly internal, or someone's experience that we read about. Today your post has given me such a boost in faith! I think sometimes that I must drive my doctor nuts with my impatience, but she continues to encourage me. I began the protocol in May 2005. Sometimes it feels like it's taking me so much longer than anyone else, but I know it's not really---and everyone has their own journey. I also need to take into account that I had to stop my antibiotics for a total of 9 months during phase 1, so that slowed me down. Your analogy was like waving a magic wand over my head. It made me realize, once again, that any worthwhile pursuit in life takes time and effort. Surely regaining our health is a major pursuit and worth all the time and effort it takes. You've helped me settle back down for the long haul. Many thanks for your post. I wish you continued success and good health. Jan |
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Aunt Diana Moderator
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Janet, Thanks so much for those pictures...you look great. Since you have been my role model in this venture I know I'll be following you in a few months. Losing weight is such a visual of what our bodies are accomplishing. It's something that others can see which I to me makes it all the more exciting. |
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expate Member in Phase 3
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Thanks for sharing!!! Positive inspiration.dette |
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Sunbeam Member in Phase 2
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Janet, You have given me a lot of hope that not only will I eventually recover but that I will loose the extra pound I am carrying since my illness began. It is wonderful to see how you have progressed. Thank you for sharing with us all, Lynn. |
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jrfoutin Research Team
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Light exposure: Minimal. Coverage + sunglasses when outside. Enjoying dominant overcast of NW winters. Symptoms: 1-3 intermittent right crest of hip pain ... sometimes. Left shoulder healing from snow removal injury of some sort (?). Lumpy lymphs still exist but no new. Shin bruise from many months ago still dark Minor but watching some skin details. Comments: Work efficiency continues to improve. Dating process confounding benchmark for stability in emotions (LOL). Experimented some with reduced abx (no IP trajectory changes), reduced Olm (no IP trajectory changes). May be in mild 5. Dunno, as mild is not usually what describes first comprehension of 5. Unusual physical strength, endurance and capability in some areas. Lots of fun to happen on discovery of these. Very interesting. Plan: Continue MP. |
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jrfoutin Research Team
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Taken by two different Costco employees 4 years apart, my membership card pictures are not great photographs by any standard but they are an impartial thousand words:
Notice the bald spot on the top front of my head in the 2004 picture. I actually thought that was a pretty good picture at the time. (Better than my 2000 prednisone moon face.) I'm still changing every month. Pants I purchased in June have had to be taken in more than once. Below are a few footnotes (wink). No I don't have 3 legs and the MP isn't for that (LOL). Seriously, though, it is all the same right foot at different times. Far left image was what I considered a good day, just a few days different from the center picture swelling (both shown on same wood floor), which I considered as not the worst edema I suffered before or during the MP, but when I had the presence of mind to take pictures. Doubtful I'll have swollen feet like that again now I know about the MP. Far right foot image I took this morning. Notice not only shape, but color. No, I haven't spent time in the sun to boost my color, but I think the circulation has certainly changed. Maybe not all the way well either, noticing tissue damage is still evident in brown and red mottled splotches. But hey, things are wayyyyy better! You might also question the ethics of showing polish that could obscure the real color of the nail, but any woman knows that being able to bend over and paint their nails has real meaning, or even feeling like putting nail polish on at all. Oh... that right foot recently wore nylons and danced in heels for a couple of hours non-stop. Those very sick feet on the left never really got taken out anywhere except in flat, wide, comfortable but homely well-stretched-out shoes and never to do any standing for more than a few minutes at a time.
Best to all--Janet |
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BARNEY Moderator
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Hey Janet, Wow Wow Wow!! You could just tell new beaus that the 2004 pic is your mom!!!! lol HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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expate Member in Phase 3
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Wow, a picture paints a thousand words.dette |
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Sunbeam Member in Phase 2
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Hi Janet, Wow! This is so wonderful, thanks so much for sharing, you give hope to so many of us. I hope that 2009 will bring even bigger improvements for you, Take care, Lynn |
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Aunt Diana Moderator
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Wow!! That Pm I sent to you was BEFORE I saw these pix. Go Janet Go!! |
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jrfoutin Research Team
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I hate to think Dr Marshall's only service to humanity is to make women beautiful. But women do care about their physical presentation and we are hot wired to associate health with physical markers. Soooo.... Pardon me continuing on that subject one more time as I post again from an answer to a PM on another thread. Aussie Barb thought it would be good for others to read here too: Many days I was discouraged about my weight. I walked on a treadmill before the MP, early in the MP for quite some time and then just gave that up for a while, and some off and on. Walking or not walking did not change my weight one whit and each doctor visit, each quarter of each year just marked nary more than one pound difference. No matter if I exercised or not, and I tried all sorts of variations on low carb all during the MP. I looked longingly at before/after pictures of early adaptors Meg and Belinda, who were sporting glam in bright colors at conferences, wearing heels and... well, looking great. I had started my career in the fashion industry, had sketched many a fashion illustration so I knew what long lean lines and bone structure meant, and before I was really ill had taken university students on field studies to industry leader locations in London, NY, LA. Being huge was not my idea of fun. Before I divorced in Spring '08, though, I went to the doctor's scales and a few pounds had finally fallen off. This was the first indication of change that happened slowly but surely during summer, fall and still is happening. I had a grueling move to another state, and I think I just walked more to get from place to place in my new home and I had to do all the yard and housekeeping too. I now walk on the treadmill 4-6 days a week (between 2.5 and 3.0 speed, between 1 and 1.5 miles for about a half an hour and my pulse rate stays around the 80's and I can talk without huffing and puffing while walking). But remember, the treadmill didn't do a whole lot before the MP, or early in the MP. For me (and remember, some have found other food sensitivities that they overcame after they got well), bread/bakery items -- even if I make it myself from whole wheat with no folates -- seems to halt or slow weight loss. I suspect the problem with beer/YEAST may also be a bread/YEAST issue too, but don't have any data other than my experience to support that concept other than Marshall's recent discussion on beer/YEAST. Milk products (1/2 & 1/2, butter, cheese) seems to slow progress too, but I like berries in 1/2 & 1/2, butter on cracked wheat hot cereal now and again. My meals have more emphasis on really easy to fix (I'm a lazy chef) raw nuts, salad greens, fresh stuff with hefty helpings of olive oil and a touch of sulfate-free balsamic vinagrette dressing I make myself (I don't like flavor or history of canola and other oils that others on MP use with no problem, and find commercial dressings are full of problem ingredients). I like a few seasonal fruits too -- mostly berries and mellons if I can get them. I'm sort of going with the idea that I can pretty much eat a little poison up to once a week if there is a party, but then fall back into my simple meal routine the rest of the week. If I don't grow it in my garden during summer season, I'll buy a huge bag of frozen organic green beans and normandy veggies that lasts a month. Microwave, drizzle plenty of olive oil instead of butter, and then dump on some whole raw almonds (with beans, not normandy), coarse ground black pepper, dried onions and maybe some other thing or two. That's a meal. I buy inexpensive chicken family packs, crock pot it and that's the meat I usually eat. But I like a roast or steak once in a while too, if my budget allows. The MP and when my body was ready to make the change is what really must be expected to have dropped the weight. Stress reduction may have helped, and rest habits and dietary changes are simply nutritional support to the main thing I expect is taking place. But my food support concepts in a nutshell:
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JanEE Member in Phase 3
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You said it! Even at 75 I keep trying to look better, as well as feel better (get healthy). I just want to say that it was my PM that Janet responded to. I had written her to tell her how inspirational her weight loss was, and had asked her for some history behind it. I also managed to do a bit of whining about my own weight, which seems stuck to me forever. The above was what she posted on my thread. So, thank you Janet, for all your thoughtful information. I have read it at least three times looking for something I can try that might help. I did lose 5 pounds recently and got excited thinking this was the beginning of my weight loss, but was told at my checkup it was probably because my thyroid had been increased. Then I had to decrease the thyroid and didn't lose any more. At least the weight sort of stabilized at that point. Our weather has been so cold I can't get too excited about walking outdoors, so your post did inspire me to get back on the treadmill again even if it doesn't affect my weight. I know it helps me sleep better, and good sleep puts a rosy glow on everything. I think, while my eating habits are a bit different than yours, I do eat pretty healthily. I still read labels and avoid vitamin D, but I could be more careful about folates. I fall off the wagon here and there with what you refer to as "poisons". My "poisonous" choices include dark chocolate, a cookie or two here and there (still trying to avoid them if made with egg yolks---but not always), and desserts and wine at family holiday gatherings (about 4 times a year). I cook from scratch, eat mostly chicken instead of other meats, and make lots of homemade soups (loaded with vegies). I have a cup of weak coffee about every third or fourth day, drink a glass juice about once a month or less, and don't drink soda pop. Drinking more water would be good thing. My daily slice of bread consists mostly of Ezekiel bread, or occasionally artisan bread, and I use a mix of olive oil and butter for a spread. I guess I'll just have to muster up some faith and patience and just keep hoping---while looking to you, and others who have lost their weight, for inspiration. Thanks again Janet, Jan Last edited on Thu Jan 29th, 2009 04:07 by JanEE |
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RevDennis Member in Phase 3 
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Great report Janet. I have had a weight problem since I turned about 27. In my early 40's I went on Nutrisystem and got down to 180. As soon as I got off I went back to my average weight of 230. Then in 2000 after I was diagnosed with Sarcoid the Dr put me on high dose prednisone. Wow, I ballooned to almost 300. I was six foot tall, now I am 5'10 1/2" and 210. I started MP a little over 3 years ago now after a major illness with sarc that almost took me. My weight was all over the place until last April when I had the major problem with my heart. Now it is very stable at this level. I believe it is the MP fixing all my systems that have been so messed up. Seeing the difference in you gives me hope that not only will I feel good but maybe I'll look good! My wife lives in hope. Have a great evening. RevDennis |
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geneartemenko Member in Phase 2 
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Hi, Janet. Would you please tell, What is your experience with eating fruits. I am usually eat 1-2 apples or apple+pear during the day some times orange. Is it to many? Thanks. Gene |
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jrfoutin Research Team
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???? I don't know all the answers to someone else's diet questions. I had to discover what worked for me. It is that I was looking for things that seemed to be helpful that is a takeaway of merit, and your choices might be different from mine (reference: "some swear by rice, others swear at it"). ???? Course, apples might be considered problematic for some reasons (search apples on this site, but I'll eat an apple now and again), and oranges for another... and a steady diet of either (volume/frequency) could be a third issue. Mix the mix. Best to all--Janet |
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eClaire Member in Phase 2
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I was told by TM, after asking a similar question, that 1 apple a day (apples and pears are immune immodulatory) is probably fine. For me, apples are the only thing that really helps with dampening IP. (For some people, it may do the opposite I guess.) So if you don't desperately need more than one a day you might want to take that into consideration. As it is, I save apples for their immune dampening effect. Claire |
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jrfoutin Research Team
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Thanks to all about food questions and discussion. All good. As food is so personal to all of us and food discussions can go on forever, now might be a good time to return this alumni thread to milestones so those reading won't think they veered off into a deli isle or fruit/veggie stand. Since this is my thread, I'll end the food discussion by encouraging folks to read the site if there are immune-related concerns on any one food, and figure out and eat what works for you (a friend of mine charted what she ate as well as her IP responses and meds... ). Like I said, once in a while, I'll eat just about anything that isn't overtly on a "do not ever" list. Best to all!--Janet August 5th 2009: Thank you. My medical status has not changed but health is holding just fine. I look and feel great. Have had many people in different circumstances and times remark positively on my appearance and energy level. Diet/light are all I have to work with right now, but not obsessed with either. Just daily doing and if things aren't perfect then I figure I'll do better next time. In my less-than-ample spare time, have actively discussed MP with others, handed out bacteriality.com web URL, showed people my before/after Costco membership card photos while saying quickly "the MP works, and the world of science and medicine as you know it is already changing because of it. If your health is so bad it can't wait, there is hope right now but you have to take the time to work hard and learn. How you approach getting well impacts the outcome." Of that group, some may actually listen without thinking I'm one bubble left of plumb for suggesting the nutritional and medical societal systems they trust have actually failed in exponential proportions across multiple paradigms (a difficult thing to see, except for those who don NoIRs). Of those who listen (because they are so ill they've had time to comprehend they are at a "dead end" otherwise, but not so far gone to be heavily into palliative solutions they dare not let go of), maybe a few will actually take the time to learn -- and of those, only a few will be able to comprehend and convince their doctors of anything. Some of us in MP-land spend an inordinate amount of wasted time targeting opinion venues that do not matter, with fragmented details. It is far better to distribute ARF published documentation and help Marshall et al roll back relevant molecular details quickly and publish that to major social and science stakeholders ASAP. I do, however, appreciate all those who are doing what I cannot at this time toward that effort:
Best to all, stay the course, and I'll get back when I can--Janet
Still have dark circles under eyes but definition in face and neck muscles/tendons appearing. Some sag/wrinkles under chin where large fleshy rolls once snuggled under large round moon face (even after I quit prednisone, I never lost the weight I gained with it until after several years on the MP). I haven't a scale, but can only say that I have to keep close tabs on my very very loose pants and skirts so I keep the subject covered. (It's about time to take seams in again.) Not young at 55, but energy and clarity obvious. |
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jrfoutin Research Team
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Put up a new avatar. Still losing weight even though I am only able to wear glasses now and watch my diet. Hopefully, some barriers that have had me on a very long MP vacation will abate shortly. If not, I'm glad for stamina moved back to that when I was much younger, and with the right makeup around eye dark circles I look OK for an old geezer. Some reminders tell me I'm still not all the way finished with MP, but they are minimal most the time and wouldn't have noticed them if I had not been so cued into reporting indicators for so long on the MP. So it is a mixed blessing of sorts. I need to get back on the MP, but I'll survive while I'm getting through the economic challenges at present. |
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BARNEY Moderator
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Janet, I was just thinking of you a couple nights ago and wondering how you are. So glad to hear you are doing ok. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
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JanEE Member in Phase 3
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Great minds! I was also thinking of you, and thinking of PM'ing you to see how you're doing and there you are. Wish you would have posted your new avatar without the shades though, so your ever increasing weight loss would show off to better advantage. Have you just about lost what you need/want to? I've dropped a couple pounds myself in the last two or three weeks. I hope the trend continues. It does feel wonderful, although I wouldn't know it yet to look at me. Glad that you're almost in a position to re-join us, although you haven't really deserted us. We miss you. And you'd better re-think the "old geezer" bit. You're in one of the two best decades of life. Enjoy! Jan |
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Aunt Diana Moderator
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So good to see and hear about your improvements. |
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