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Unexpected Improvements on MP
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Juanita
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Joined: Thu May 3rd, 2007
Location: Alberta Canada
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 Posted: Fri Aug 8th, 2008 17:40

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As we all pause for a moment to imagine Dr Marshall dressed as Elvis saying, Thank you, thank you, very much!  You've been a wonderful audience. 
:D:D:D:D



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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
Deb Grabetz
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 Posted: Fri Aug 8th, 2008 18:04

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:D:D:D:D



____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4

Juanita
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 Posted: Fri Aug 8th, 2008 18:35

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My irregular heartbeat, that had stuck with me since surgery when I was eight, is gone.  And this last set of potential skin cancer spots that were removed are the first set since 1998 that are completely benign.  That one makes me do the Happy Dance.  :cool:



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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
Kas
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 Posted: Fri Aug 8th, 2008 21:38

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I also have happy news today.

Doc just called with the results of my annual physical,and kidney function has improved quite a bit from the last result - eGFR is now 62 ( had been down to 46), creatinine is now:) 89 from the 100's- she called this 'terrific' news!

Liver as usual, but half of what the highs were. Cholesterol - well, it could be better - good cholesterol is too low, bad is borderline high. I am sure it will improve, though as I progress.

Calcium normal,lymphocytes normal, anemia still present,but we do not worry about that.

I am the healthiest sick person around!

I'm going ever so slowly, but I AM making progress. I feel like celebrating withall of you here!:D:D:D

Last edited on Fri Aug 8th, 2008 21:40 by Kas



____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
eClaire
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 Posted: Fri Aug 8th, 2008 21:48

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Kas, You are my inspiration, as I am struggling with kidney issues myself right now (GFR down to 42).  Yay! for Kas!!!  Yay!

Claire



____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
Deb Grabetz
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Joined: Fri Mar 9th, 2007
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 Posted: Fri Aug 8th, 2008 22:03

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Kas, 

  Congrats! Let's throw you an online party....     



                         The Party is Here for Kas   

 

    On a very serious note, when I read of success like yours, it is like hearing the news for myself.  It is amazing to me how important others progress becomes, after you realize the patience, work, self sacrifice and complete dedication that goes into getting well at this level, from being on the MP yourself!   Good for you Kas and may your reports just keep on improving... 

               ....as you *walk the red carpet* of MP!

Hugs to you!  Deb




____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4

Elisabeth
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 Posted: Fri Aug 8th, 2008 22:57

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Nat -  REALLY glad to hear about the "happiness" thing.  Right now I wake up feeling "hit" w/ a tremendous amount of anxiety, so I'm REALLY looking forward to being "hit" by HAPPINESS!!!  So glad 4 U . . . ! :D

Deb - U'r funny!  I'm 43 and looking forward to lots of things exiting this bod. too!

New reportings for me: I've noticed of late (this sounds SO weird) is that my ear canals are getting larger; that's right!  As a child I had multiple cases of "swimmer's ear" (ear infections) and sometimes "double" infections.  Guess I was trying to collect some of the pool water in my ears!:P  Doc's used to tell me how small my ear canals were and I believe now it was from chronic inflammation there (swelling being one of the sx's of inflammation).

It seems also that my left elbow tendonitis is resolving.  I used to have to "pop it back into joint" multiple times a day from Spring 2006 on.  Thought it was b/c I'd damaged it pulling a patient up in bed or something, but now it seems that it was probably due to inflammation; the BBB (Big, Bad, Bugs) were settling in muscle groups of my left arm/shoulder/neck causing swelling and the push/pull of it all caused my elbow to go out.  I now have range of motion when turning my head to the left that I've not had since I can remember as a child; i.e., my left neck was always "stiff"....

mE :cool:



____________________
CFIDS FM hypothyroidism depression TMJ sinusitis bronchitis Ph1 Mar08 (1/08) 25D10 (3/08)25D24 (9/08)25D12 (1/08)TSH5.8 (9/08)TSH0.3 Ph2 June08 Zoloft Synthyroid MgOx Colace FiberChoice Lactaid NoIRs homebound in lo lux
eClaire
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 Posted: Fri Aug 8th, 2008 23:58

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mE,

I've noticed the same thing about the size of my ear canals.  So now when one or the other swells on the MP, I know it is more IP.  It's so funny that you can live with something for years and think it is "normal.":) 

Oh I love BBB instead of CWD!!!:D  You ought to post that on the MP terminology thread!!!

Claire



____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
Kas
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 Posted: Sat Aug 9th, 2008 00:11

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Thank you SO much, ladies, for all your support and encouragement. I could not have my cyber party with  nicer folk!

It is quite amazing how good results can lift your spirits, isn't it?

Claire,I know how the kidney issues can become a real concern for everyone, but hang in there, and things will get better. I am sure I will be going up and down with kidneys with each new dosage, but at least my doc can now see that low numbers are not permanent. I am also lucky in that I have a dear friend who is a specialist kidney pathologist, and he is totally au fait with the MP and is able to let me know when my results become too worrisome for even him! I find that being on Beni every four hours during the day, is beneficial and trying to raise my BP a bit with more fluids/salt, often helps.

Now, I hope I can get through my Aug 18 colonoscopy on the Beni,but I think I  may have to stop it for a few days prior due to my low BP. The docs will be too nervous to sedate me with my numbers,and no way is anyone shoving a hose up my behind when I am awake!!

Have a great weekend, everyone and enjoy the party!



____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
Elisabeth
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 Posted: Sat Aug 9th, 2008 00:39

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Kas,

I think they refer to the hose up your behind as "the ol' tube up the exhaust pipe"!:P

I struggle w/ low b/p too now that I'm on the MP and DO LOVE my salt - ummm!

Hope it goes well for ya (the tube thingy). :D

Elisabeth :cool:



____________________
CFIDS FM hypothyroidism depression TMJ sinusitis bronchitis Ph1 Mar08 (1/08) 25D10 (3/08)25D24 (9/08)25D12 (1/08)TSH5.8 (9/08)TSH0.3 Ph2 June08 Zoloft Synthyroid MgOx Colace FiberChoice Lactaid NoIRs homebound in lo lux
expate
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Joined: Wed Apr 16th, 2008
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 Posted: Sat Aug 9th, 2008 05:01

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Kas,

Just my experience with colonoscopy (and this was pre-mp)... they had trouble giving me intravenous sedation because of trouble finding veins. Well, yeah, after all the cleansing, you're pretty well drained of fluids. So whatever you can do to keep hydration going during the purging process, do it.

Finally, after 2 or three attempts and two different nurses, they found a vein. Then all was well.

Odette

Oh, and it's not so bad then. I had conscious sedation and voluntarily stayed awake during the procedure. I watched the video as it was being done and listened to the doctor's commentary. It was interesting. OK, it was interesting given the given.

Not to worry. :)

Last edited on Sat Aug 9th, 2008 05:05 by expate



____________________
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.
Deb Grabetz
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 Posted: Mon Aug 11th, 2008 17:48

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I've had an interesting symptom return recently....so I guess this could be an unexpected improvement!   As a young child I started *scratching my throat* with my tongue.  It drove my parents crazy as it sounds like a noise a   would make!  This continued through adulthood although my husband was much more patient with my crazy habit.  All along I thought it was allergies!  The urge to do this went away for many years and now since my last increase with abx it has returned!  I was surprised to *catch* myself doing this...and has me believing that this disease goes much farther back in years, than I realized!

Anyone else do this serenade????:cool:

Deb



____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4

eClaire
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 Posted: Mon Aug 11th, 2008 18:03

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Oh Deb, In my twenties, I used to rub my nose so much that my ex-Y would make fun of me by rubbing his nose at me.  This stopped and I now find myself doing it again over 20 years later.  Yes, I think returns of these old symptoms show us just how far back these symptoms go and that we are making progress on the MP!  Claire



____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
expate
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 Posted: Mon Aug 11th, 2008 19:32

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Wow, I used to do that too, rub the back of my throat with my tongue.  It doesn't make too much noise though.

I currently have periodic nose itching.  I thought it was just that my mom was thinking of me.  Um, wait she died 40 years ago. 

:shock:dette

 



____________________
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.
Deb Grabetz
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 Posted: Mon Aug 11th, 2008 20:40

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:shock:dette,

Whenever you're ready we can serenade together...                              

p.s.  Claire, maybe you could play the :D:D:D:D:D

to accompany us!  We could start a band...we need a *name*!!!!!


 



____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4

eClaire
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 Posted: Mon Aug 11th, 2008 20:57

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Well, I have my Dad's old harmonica, but I never learned to play.  However, just making the effort to play the thing would give me a reason to have my hand up near my nose where if would be, well...handy for rubbing!!!:D:D:D  Claire



____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
caroldeleah
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 Posted: Mon Aug 11th, 2008 21:43

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 You guys are the greatest!  Keep my laughing!  I was thinking.....my daughter could join you on the keyboard:D (maybe not--that takes two hands!!:?)

BTW She started benicar 2 days ago and despite lying down while watching the Olympics and despite not doing the stretches recommended by her chiropractor; this morning, she had no neck pain, which she came to expect daily:D:D.  Just the beginning......

Carol

Last edited on Mon Aug 11th, 2008 22:19 by caroldeleah



____________________
Uveitis|HashimotosHypothyroidism|Thyroid Nodule|Arthralgias|RefractiveMyopia|1,25D34| Ph1Aug08|Ph2Nov08|Ph3Jun09|25D 6(02/09)|25D 9(12/08)|Combigan/Cytomel/RefreshPlusSgl/NoIRs
natalie17
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 Posted: Tue Aug 12th, 2008 01:49

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Deb... I do that too!  & I sound like a pig too!  I actually get complimented on how good my pig impression is, haha.  I tend not to tell peopel I'm not trying to do a pig impression....

& Carol that is fantastic news about your daughter :D.  I know what it's like to have bad neck pain so I did a sigh of relief for her just reading that! 



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CFS/ME from June05| Ph1-July07| Ph2-Feb08 | Natalie's Story | ABCofMP
JanEE
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 Posted: Tue Aug 12th, 2008 02:59

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Deb, what do you mean being confused by posting pictures?  You are already the queen of picture posting.  Do you go through all the steps that Natalie wrote out?

Jan



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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
DNStog
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 Posted: Wed Aug 13th, 2008 01:52

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Carol...45 years of neck pain disappeared while I was in the Benicar only phase. A whiplash suffered in a car accident as a teenager left me with frequent neck pain, especially when stressed. With the exception of one short very mild period during Phase III, I've not had any more neck problems. In addition, I can move my head completely from side to side...used to be stiff when turning head to the right. --Donna



____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h

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