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Deb Grabetz
Member in Phase 3
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Posted: Mon Jan 7th, 2008 14:37 |
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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:
Janet, the message that Joyful sent could not have been said better. Yours was not an easy recovery yet your persistance has brought your health back. I love reading about your busy life...it reminds me that I will have mine back someday!!! Yours is a recovery story that reminds us all to keep pushing forward, yet would also..... inspire any newbie, to believe and committ to healing with the MP!!! Hugs from me to you, Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
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Posted: Sun Apr 13th, 2008 08:32 |
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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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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
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
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Posted: Wed Jun 25th, 2008 23:44 |
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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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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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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Thu Jun 26th, 2008 00:35 |
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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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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Deb Grabetz
Member in Phase 3
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Posted: Thu Jun 26th, 2008 06:29 |
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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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 773 |
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Posted: Sat Jun 28th, 2008 00:00 |
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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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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
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
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Posted: Sun Aug 3rd, 2008 06:20 |
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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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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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expate
Member in Phase 3
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Posted: Sun Aug 3rd, 2008 09:31 |
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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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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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Dr Trevor Marshall
Research Team
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Posted: Sun Aug 3rd, 2008 11:20 |
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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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Posted: Sun Aug 3rd, 2008 12:12 |
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Thanks, I'll definitely check it out.
oh
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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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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
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Posted: Mon Aug 4th, 2008 10:24 |
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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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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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expate
Member in Phase 3
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Posted: Mon Aug 4th, 2008 19:19 |
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Thanks for the link. Interesting.
Odette
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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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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
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Posted: Sat Oct 4th, 2008 10:53 |
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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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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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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Sat Oct 4th, 2008 11:24 |
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Congrats Janet!
I know you have been looking forward to this day...
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
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Posted: Sat Oct 4th, 2008 11:41 |
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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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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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Deb Grabetz
Member in Phase 3
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Posted: Sat Oct 4th, 2008 15:02 |
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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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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juneejohnson
Health Professional
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Posted: Sat Oct 4th, 2008 18:42 |
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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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RSD FM sinusitis celiac thyroiditis 125D62 25D30 Synthroid Ph1Feb07 ModPh2Apr07 Ph2Sep07 Ph3Feb08 NoIRs limiting light D25 15(Oct07) D25 7(Jan08) D25 10 D1.25 48(Apr08) D1.25 63, D25 11 (Dec 08)
D25 8 (Apr 09)
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BARNEY
Moderator
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Posted: Sun Oct 5th, 2008 02:05 |
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Janet,
Lookin good!!!!!!!!!!!
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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JanEE
Member in Phase 3
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Posted: Sun Oct 5th, 2008 03:54 |
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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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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: Sun Oct 5th, 2008 04:11 |
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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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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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