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expate
Member in Phase 3
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Posted: Sun Oct 5th, 2008 14:48 |
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Thanks for sharing!!! Positive inspiration.
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 346 |
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Posted: Thu Oct 9th, 2008 06:11 |
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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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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
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Posted: Mon Jan 26th, 2009 23:28 |
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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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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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jrfoutin
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Posted: Tue Jan 27th, 2009 20:04 |
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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:
Dec 2004 was about a month before I found the MP on the Web. I didn't officially start the MP until I was able to meet August 9, 2005, with my current doctor. I was wearing a hoodie in 2008, and hood stood up on my shoulders. I was wearing a turtle neck sweater in 2004. Those are my 2004 shoulders, though (arggh!).
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.
Fun to see the changes, not just read about them, eh?
Best to all--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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BARNEY
Moderator
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Posted: Tue Jan 27th, 2009 23:25 |
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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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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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expate
Member in Phase 3
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Posted: Tue Jan 27th, 2009 23:25 |
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Wow, a picture paints a thousand words.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 346 |
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Posted: Wed Jan 28th, 2009 02:47 |
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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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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aunt Diana
Moderator
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Posted: Wed Jan 28th, 2009 06:06 |
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Wow!! That Pm I sent to you was BEFORE I saw these pix.
Go Janet Go!!
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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jrfoutin
Research Team
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Posted: Wed Jan 28th, 2009 22:03 |
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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:
- I've recently become way generous with olive oil for taste reasons alone, so I don't think that is going to put anything on somebody's hips.
- Fresh/seasonal veggie/fruit/nuts is best and grow/harvest my own when I can. Cook less, enjoy more.
- Carbs and milk products are problematic for me (Paul's nemesis was fruit, some swear by rice while others swear at it... so figure out your own).
- Chicken mostly, and red meat once in a while.
- Poison only rarely at parties now and again, and then be picky. (Was that exotic treat made with fish oil, soy, egg yolks, sunflower seeds, flax or mushrooms? No thank you!)
- No D, no supplemental/additive folates.
- Drink water instead of any other liquid. (Never did coffee, tea, alcohol, wine or caffiene soft drinks before or during the MP... rarely any non-caffiene carbinated either, but fruit juice habits have changed.)
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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JanEE
Member in Phase 3
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Posted: Thu Jan 29th, 2009 04:06 |
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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,
JanLast edited on Thu Jan 29th, 2009 04:07 by JanEE
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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RevDennis
Member in Phase 3
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Posted: Thu Jan 29th, 2009 05:25 |
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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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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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geneartemenko
Member in Phase 2
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Posted: Thu Jan 29th, 2009 22:38 |
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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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Lyme 05 burning&pain muscles and joints,TMJ blurring vision 125D51 25D40(Aug07) Ph1 Feb08 25D19.3(May08).Ph2(May08) 25D18.3(July08).25D13.0(Oct08).25D-11.4Dec08.25D-9.3Apr25D-11.5Jn09.D25-10,1.25d-14.4Sep09
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jrfoutin
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Posted: Thu Jan 29th, 2009 22:50 |
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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
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Thu Jan 29th, 2009 23:34 |
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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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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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jrfoutin
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Posted: Thu Jan 29th, 2009 23:59 |
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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:
- Supporting the ARF financially
- Working with respective doctors to very carefully adhere to the MP, monitor, and track one's own progress
The MP fails only if we fail to do our part.
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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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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jrfoutin
Research Team
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Posted: Tue Oct 6th, 2009 22:48 |
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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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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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BARNEY
Moderator
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Posted: Wed Oct 7th, 2009 01:16 |
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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
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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JanEE
Member in Phase 3
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Posted: Wed Oct 7th, 2009 02:25 |
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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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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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Aunt Diana
Moderator
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Posted: Wed Oct 7th, 2009 04:25 |
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| So good to see and hear about your improvements.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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