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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Sun Jun 14th, 2009 14:23 |
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I can't imagine that there is anywhere else on the Net where people celebrate their own misery with such a glad heart!
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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
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Deb Grabetz
Moderator
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Posted: Sun Jun 14th, 2009 15:31 |
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*Deb laughing hysterically* Now Claire, that was the best I've heard in awhile!
Should be a quote of some sort for our MP t-shirts!
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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
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expate
Member
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Posted: Sun Jun 14th, 2009 16:05 |
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Awesome!
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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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Pipistrelle
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Posted: Sun Jun 14th, 2009 20:57 |
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Yeah, BAD = good
(Bugs Are Dying) 
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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Deb Grabetz
Moderator
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Posted: Mon Jun 22nd, 2009 18:33 |
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MY NAILS!!!! In my 20's I used to have the most beautiful nails. People used to think they were not real. They were hard and would grow as long as I'd let them. Sometime in my early 30's this stopped. I then switched to acrylics as I missed those nice nails, which hindsight, with my bacterial load that I was unaware of was probably a BIG mistake. When I flared in '06, I had the acrylics taken off for good.
Now, I have my own nails back! A small improvement, yet tells me that the MP is working in many different ways! Oh and today I have them manicured French style.
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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
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Sarah Jane
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| Joined: | Fri Jun 15th, 2007 |
| Location: | Alberta Canada |
| Posts: | 155 |
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Posted: Mon Jun 22nd, 2009 20:26 |
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Congrats on the beautiful, natural nails, Deb!
I used to have a lot of ridges in my nails, but they've evened out on their own nearly all the way over the past year. I have just a few small ones on a couple of fingers now. They also used to be very weak, and they're stronger now. 
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Deb Grabetz
Moderator
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Posted: Mon Jun 22nd, 2009 20:44 |
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| Thanks Sarah Jane! It is nice to see these milestone improvements that we fail to understand when we've lost in the first place. Yes, I too had the ridges...and it seems like I've looked this up before I was on the MP, to figure out what was causing. Any ideas??
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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
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Sarah Jane
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Posted: Mon Jun 22nd, 2009 21:10 |
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I did a Google search, and it seems to be that when your body is in a state of crisis, your nails are an indicator. Vertical lines are very normal and are no cause for worry (the kind that run the length of your nail from bed to tip), whereas horizontal lines tend to indicate some interruption in your body's ability to create the nail and is likely a sign of underlying illness.
I tried adding the MP to my Google search, but all that came up was a post at Sarcinfo by Belinda discussing cold hands and feet, with a passing mention to damaged nails.
So it seems that the resolution of nail issues is a sign that things are working more smoothly internally.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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eClaire
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| Location: | Virginia USA |
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Posted: Mon Jun 22nd, 2009 21:54 |
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I do not believe for a second that vertical lines mean nothing. I think it depends on the lines. Even the healthiest nails probably appear to have lines, whereas folk like me have noticeable ridges that are sometimes inflamed underneath. When your nails are splitting both vertically and horizontally, you know you have problems.
Again, I think this is a sign of medical science not having a clue about early indicators of chronic illness.
ClaireLast edited on Mon Jun 22nd, 2009 21:55 by eClaire
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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
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Sarah Jane
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Posted: Mon Jun 22nd, 2009 22:20 |
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The articles I was reading did mention that colour changes or inflammation at the ridges were indicators that something more serious was going on, whether the lines were vertical or horizontal. What they seemed to be saying was that very minor vertical lines are nothing to worry about, whereas horizontal lines seem to always indicate an issue, whether those lines are minor or not.
I have no idea what science was used to back any of that up- it was just a cursory search.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Deb Grabetz
Moderator
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Posted: Sun Jun 28th, 2009 18:22 |
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Sarah Jane and Claire,
This morning I had some research energy and decided to see what I could find about fingernails. My fingernails are incredibly changed, so much so that this has been on my mind lately as to what healing is going on! My thinking is that I've not had nails like this since my 20's, as I posted earlier. It was not unusual back then to get compliments on my nails because of the way they looked. Of course I made a huge mistake by wearing acrylic nails, with my body fighting sarcoidosis all these years. Ugh, the bacterial load I added.
So, here's the clip that I found the most interesting in regard to healthy nail growth...
What Makes Fingernails Grow?
"If you’re concerned about how to make your fingernails grow faster, it’s important to understand how fingernails grow in the first place. Fingernails are composed of protein fibers called keratin which is the same protein hair is made of. Growth occurs from the moon shaped area seen at the base of the nail which is sometimes known as the growth plate. As the nail grows, cells from the matrix multiply, mature, and die."
"Another consideration is your general health status. A variety of underlying disease states can slow down fingernail growth and make nails more fragile. These include kidney disease, thyroid disease, and a host of other medical conditions. If you’re concerned about nail growth and are experiencing other symptoms, a few lab studies might be in order to rule out underlying health conditions that could contribute to nail problems."
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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
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Sarah Jane
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Posted: Sun Jun 28th, 2009 18:55 |
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Very interesting! Thanks for the info, Deb.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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eClaire
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Posted: Sun Jun 28th, 2009 21:24 |
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Thanks Deb.
Hmmm...I was a premie and so have small nails and no moons. My nails grow fairly quickly, but are very fragile. What's weird is that my hair was always incredibly healthy looking and grew quickly until a couple of years before total disability. Indeed, my hair growth slowed with total disability and I noticed that in year two of the MP, my hair grew faster. I've always wondered how my nails could be so lousy my whole life--just getting worse with age and health--while my hair could be so great for so long. Given the state of my nails my whole life, it is obvious that SOMETHING was going on.
Claire
P.S. I don't know if this is an improvement or unexpected IP, but my freckles are returning. I always had a smattering of freckles on my arms and neck (less elsewhere). Now they are back. Unfortunately, 4 small age spots also appeared on my left arm, which has me thinking that all of this might be unexpected IP versus improvement. Last edited on Sun Jun 28th, 2009 21:27 by eClaire
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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
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Sarah Jane
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Posted: Tue Jun 30th, 2009 20:04 |
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I've also noticed a change in skin spots since being on the MP. I have a few small new ones (they're all benign) and one that has shrunk by half. I've also noticed little freckles popping up here and there and then sometimes they'll disappear (all the females in my family freckle easily, but usually in the sun and we've been avoiding that for 2 years now). And some of my little scars (I scar really easily from every scratch and always have, so there are plenty) are fading.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Alayne
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| Location: | California USA |
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Posted: Wed Jul 1st, 2009 10:31 |
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I found new freckles occurring on the sides of my face last year. Pretty much where pregnant women often get pigmentation (from what I've gathered from women who've been pregnant - not a study). Some of the freckles were more blotchy than circles.
Normally I'd had gotten something like that from too much time in the sun (I'm very fair), so naturally I was surprised. However, now I'm in the daylight a lot more than last year and the spots are not only gone, but haven't recurred. I've worn Zinc Oxide the whole time.
What this says...I don't know. I didn't feel worse for the blotches. In fact, I'd rather take a blotch on my face over hip pain any time.
As for my fingernails - they're still extremely ridged. Vertically challenged on the most part, but the thumbs have little mountains, valleys, and of course ridges. Right now my toenails seem to be growing faster than anything. What a difference to my life! I get to cut them once to twice a week. Just what I was looking for when I signed on. LOL.
In the end, I will admit that my hair is not getting any less gray, which at times bums me out when I read about others growing new darker hair. <sigh> Mine certainly grows, but is less curly than it used to be, is holding the gray with an iron fist, and grows more slowly (which saves me money at the hairdresser!).
So, there are a few silver linings in all of this.
~Alayne
Edit: Ah, but this thread is about unexpected improvements. Well, then I will tell you I was completely pain free for over least three hours today. I went for a long walk on the beach, plus jumped from big rock rock on the marina, looking for sea creatures. I felt like the little old mountain goat I used to be. My friend said I looked perfectly normal and full of life. He couldn't believe it. HA!
This is coming from a wheelchair or bedbound woman who started the MP 3.5 years ago!!!! And who still looked like an 90 year old lady getting up from a chair just a month ago. Call me gimpy until now.
Quite honestly, nor could I believe it. I had balance, strength, no pain, and sticky shoes soles that let me run from giant rock to giant rock. I felt about 15 years younger. It was lovely and overcast, which made it all the better. I held out for over 6 hours, then wanted to go home. Took a 3 hour nap and here I am, still awake. Yeah, didn't quite mean to throw a pseudo sleep schedule off, but what the heck. I had GREAT day! It was really something after all this time. Totally pain free for over 3 hours and could run the rocks! I found a stunning starfish too. Wow!!!
Last edited on Wed Jul 1st, 2009 10:50 by Alayne
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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eClaire
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Posted: Wed Jul 1st, 2009 15:15 |
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Alayne, I am so happy for you that you had your day at the beach and felt so well! When we have been bedridden and housebound, having days like this are like receiving little miracles. I sometimes forget that just being able to sit up in a chair for more than five minutes or a recliner for more than 20 is something I could not do pre-MP.
While grateful, if you are like me, you want More! We want more!
Congrats again. Claire
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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
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expate
Member
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Posted: Wed Jul 1st, 2009 16:43 |
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Alayne, what a wonderful entry. Thanks for sharing.
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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JanEE
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Posted: Wed Jul 1st, 2009 17:48 |
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Alayne, I know exactly how you feel. It's indescribable and wondrous. I had almost a week of that once in phase 2. Even time expanded. While I've had some good days I haven't had anything quite like it since, but I hold out hope. To me it was a sneak peek of things to come.
Recently, I had something odd happen that kind of startled me. It happened so quickly that I didn't fully realize what took place until it was finished. I was at the checkout in the grocery store and returning an item. She asked me if I wanted a refund or did I want to go get another one. I said I might as well get another one, so I turned and suddenly something in me said run. But as quickly as the thought came---the thought went, and I just settled for walking fast. I hadn't even been feeling that great up until that moment, but walking fast felt good and nothing hurt. I was kind of stunned. Running is something I haven't done for a very long time. At 75 I thought my running days were over. It made me wonder if I would run again at some point.
So, congratulations on your day at the beach. I hope you have many more.
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
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Sarah Jane
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Posted: Wed Jul 1st, 2009 18:48 |
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Alayne, what a wonderful post! I am SO happy for you for the day at the beach, and the 3 pain-free hours!!! Precious, aren't they? Precious... (my Gollum impersonation ). What a fabulous break from daily drudgery, and I'm very glad to hear that you've improved so much since first starting the MP! Surely a sign of more wonderful things to come.
Jan, I've always loved running but have been frail and easily tuckered out since I was a kid, so I never really ran much (my older sister ran everywhere, she had two speeds- running and asleep, lol). Last year, around February, I was able to run on our treadmill at 7 miles an hour for 5 min or longer (as part of a half-hour walking/running workout), whereas now I can't take the stairs without feeling winded and completely trashed. So perhaps that was my window into what progress will look like for me further down the line. I'm sure one day we'll both be running fools- going as far and as fast as we like and feeling fabulous. 
Claire, you are definitely right. The more areas of progress we see, the more we want. Luckily, we're slowly but surely moving in the right direction and we all have many more improvements ahead of us!
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Juanita
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Posted: Thu Jul 16th, 2009 18:36 |
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A mole I've had since I was 12 just fell off. And a flat wart that's been coming and going for 10 years finally disappeared. And for the first time since I got sick, the heels of my feet are smooth and crack free.
Darn crack. So addictive. Tell your feet. Just say no.
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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
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