Psoriatic Arthritis Journal - 2.5 year Update Page 63

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Re: Psoriatic Arthritis Journal

Postby Lesliec1 » Sat Dec 22, 2012 6:45 am

Hey Nicole, Later I'm gonna forward you an email I got from Neal Barnard. I'd like to know if you know anything about what he mentions. I had been corresponding with him a little bit and that's why I tried the ED again. I know his friend Ingrid pretty well and I think she's been prodding him to help me. Nice to get personal attention from such smart and kind people.

ANYWAY, don't respond soon. Go have yourself a fabulous holiday! My brain gets turned off for a few days starting tomorrow morning.
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Re: Psoriatic Arthritis Journal

Postby nicoles » Sat Dec 22, 2012 11:11 am

Hey Leslie - how cool to talk with Dr Neal B! Nice! You are pretty close to PCRM headquarters, right?

I just got your forwarded email, and it is really easy to reply, so no need to wait. I looked into using antibiotics for the treatment for inflammatory arthritis before I looked into diet, and it seemed like a good idea initially. I even read a book about it, although I don't remember what it was called.

I like the idea of treating an underlying infection, in case that is the trigger for the overactive autoimmune response, but I also am fairly convinced of the leaky got connection to autoimmune stuff and antibiotics really damage the gut and increase it's permeability.

A doctor I spoke with about it said it makes sense that it would seem to work, because antibiotics have an anti-inflammatory effect on top of their other properties, so it might be more like taking a pain pill than a cure, and a pain pill that is connected, like so many others, to a higher chance of getting cancer down the line. This was his explanation for why he happened to think it was not a good thing to try, and also why people were on them for so very long.

Anyway, it seemed like there were pros and cons to the whole thing, and then I found other stuff - diet!- and stopped looking into it.

Very interesting to hear Dr Neal's take on it too, though! Thanks for showing me that.
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Re: Psoriatic Arthritis Journal

Postby moonwatcher » Sat Dec 22, 2012 11:37 am

Hi nicoles,

Thanks for the great Zen "Do" post--yes, a thousand times YES!!

xoxo

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Re: Psoriatic Arthritis Journal

Postby Lesliec1 » Sat Dec 22, 2012 12:23 pm

I like the idea of treating an underlying infection, in case that is the trigger for the overactive autoimmune response, but I also am fairly convinced of the leaky got connection to autoimmune stuff and antibiotics really damage the gut and increase it's permeability.


Good point. See, I knew I should ask you!

might be more like taking a pain pill than a cure, and a pain pill that is connected, like so many others, to a higher chance of getting cancer down the line. This was his explanation for why he happened to think it was not a good thing to try, and also why people were on them for so very long.


Hmmm, yes indeed. People sure do seem to be on it forever. I certainly noticed that and wasn't too encouraged.
Anyway, it seemed like there were pros and cons to the whole thing, and then I found other stuff - diet!- and stopped looking into it.


Yes, me too. I let it go from my mind when I heard about this diet. The fact that he mentioned it just made me wonder if I should re-visit the issue. I thought hmm, what if diet AND that would make a difference? I never happened to hear of anyone who tried both that and a plant-based diet.

P.S. You should be a doctor. What do I owe ya? Send me a bill!
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Re: Psoriatic Arthritis Journal

Postby nicoles » Sat Dec 29, 2012 4:58 pm

Lesliec1 wrote:Yes, me too. I let it go from my mind when I heard about this diet. The fact that he mentioned it just made me wonder if I should re-visit the issue. I thought hmm, what if diet AND that would make a difference? I never happened to hear of anyone who tried both that and a plant-based diet.


I never heard of anyone like that either. Although there is some risk involved of undoing some of the ways the WOE is helping, namely re-injuring the healing gut, it might be something to try at some point. Did you ask Dr ND about tests to determine what kind of infection it might be that you'd take antibiotics for? Might be a place to start.

I'd eat hookworms to get better. Or go for a fecal transplant, if it was possible it could work. What I mean is, anything is fair game with the kind of illness we have.

Lesliec1 wrote:P.S. You should be a doctor. What do I owe ya? Send me a bill!


:lol: Shut the front door! :lol: I love talking to you about this stuff - believe me, most other people I know are not nearly as interested in hearing (as I am in telling at least ) about all the information and opinions I've formed about this subject over the last few years!

Hope your holiday went well!
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Re: Psoriatic Arthritis Journal

Postby nicoles » Sat Dec 29, 2012 5:27 pm

Holidays 2012

Well, I made it. I pushed myself, did too much, ate too much, gained 8 pounds, and generally overstretched myself for a month, yet I am still not that bad off. This is progress!!

Things I did this year, that I formerly could not do without paying for it, BIG TIME:

1) Did not get enough sleep for days on end. Stayed up until 1, 2 3 in the morning, and am not in the middle of a huge flare-up. Most that happened is I feel tired, a bit stiff and I am wearing my crabby pants. This seems pretty normal.

2) Overate. I ate and ate and ate until way past I was stuffed on multiple occasions between Thanksgiving and Christmas. While overeating is not a comfortable thing for anyone (try getting to sleep when you are packed like a musket - ick! Almost like being sick-drunk.) (OK, not really. But still.)

Overeating used to make my psoriasis and joint pain and digestive pain really act up. Not so much nowadays, although I still believe it isn't good for me, at least I did not totally mess myself up.

3) Dropped the ball on exercising and, more importantly stretching, and relaxing, for three weeks straight. Used to be that if I did not stretch or get moving, the stiffness and joint pain would accumulate beyond normal levels. Now, I fell what I'd categorize as normally stiff. I mean, exercise and stretching are good for all, right? Not just us sickos! :lol:

4) Did not meditate regularly, and yet I did not spiral downward into a full-on, catastrophizing, self-defeating pattern of thoughts or actions. This might have to do with some measure of burgeoning maturity, not diet, but why not throw it in with the rest? ;-)

5)DID NOT FEEL DEPRIVED OR JEALOUS OF OTHER PEOPLE"S FOOD This one is a biggie. I usually am barely, if at all, successful at fighting off the "poor me's" before, during and after any holiday, and definitely not above being a real jerk about it to really nice, considerate people like my DH.

This year was so different, though. I was not jealous at all of the foods I saw on the table at Christmas. I actually felt bad for the people who were eating them - they were eating boring, bland scalloped potatoes, cooked cabbage and crowned pork roast, (which my DH said was truly tasteless) while I got to have my delish sweet potatoes, salad and soup. I think all the tasty veggies have really turned our tastebuds around. They had wine, and I had fresh pomegranate juice with soda water. They had cheesecake (never liked it, myself) and I had yummy frozen cherries!

Why did this happen? Maybe because I was really organized and made sure I had ample foods I like made and ready, including treats that are on-plan for me (bags and bags of frozen cherries! Mashed sweet potatoes! My fave veggie soup, blended with cashews to make it super-creamy! Salads!) (yes, I really love salads - they are like a treat for me.)And I gave myself permission to overindulge to my hearts content, for this brief time. (yesididgain8poundsbutnevermindthatsmallpricetopayikowhowtooseitagain)

And maybe it was because my food really was better, and I could see that, once I got over the addictions and associations, both physical and emotional, of SAD foods.

And possibly because our bodies know better! My DH had three days of being off plan, as we were travelling with all my food and he thought he wanted to treat himself.

Turns out, the "treat" quickly turned into a "bummer" and now that we are home, he is craving homemade veggie soup, salads and fruit.

CRAVING.

Innersting, innit it?

Anyway, I dunno why number 5 worked out this way this time. But it was really nice to relax about it - for real - and just enjoy the holidays.
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Re: Psoriatic Arthritis Journal

Postby moonwatcher » Sat Dec 29, 2012 6:26 pm

This post really made me giggle and chuckle, nicoles. So glad things went well for you!!

When Mike and Kelly were here, Kelly was saying the same thing about the food at her sister's--she just didn't crave it or want it or miss it anymore. What a breakthrough, yes?

And you have such a good attitude about how it all went. So glad you are weathering the little imperfections so well. Bravo! And thanks for the entertaining way of presenting it!!

Happy New Year!!

xoxox

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Re: Psoriatic Arthritis Journal

Postby Debbie » Sat Dec 29, 2012 8:21 pm

That's interesting about the antibiotics. Before I got actually diagnosed with psoriasis, my GP, well not mine but I really wanted him, he thought I had some kind of skin condition (forgot the name now) but he thought is was just infected. He put me on a 7 day course of antibiotics. The "infection" cleared up. (I wasn't at my worst yet) But once I stopped the meds, it came back. So he doubled the length of time. I cleared up even more. But again when I stopped taking them, it came back. The third time he had me take them for 21 days and again it went away then came back. He sent me to a derm. The derm did not believe me. My biopsy came back as palmo plantar pustular psoriasis. In the biopsy they also found staphylococcus bacteria. I of course was convinced that the source of my troubles were the bacteria. He said it wasn't. I told him about my successes with the antibiotics. He said it wasn't possible. He sent me to an infectious disease doctor who also said it wasn't possible. So I left with an antibiotic prescription in hand. I planned on taking day by day pics to PROVE to these unknowing doctor just what was what. The problem? It stopped working :cry: I was devastated. I took the full course but I didn't get any better.

My first inkling that diet might be involved was when I went back on a low carb diet, after trying this one for 4 weeks. Of course after 4 weeks I got no relief, not enough time. But when I first began the low carb diet, my hands got better. Lots better. Of course it came back with a vengeance. I don't know why I got better when I restarted low carb, maybe a disruption or something. But I really didn't think at all, after trying this way of eating diet had any role in it. And of course my derm confirmed my hunch. :roll:

I remember being on a psoriasis board and after curing mine I kept telling people there about this diet. I was called a troll. Of course almost everyone who answered me said they tried diet and their doctors had told them diet had nothing to do with it. I stayed away for almost a year then went back. The same people were still trying the same things, new meds, new concoctions. Getting sicker. I made my last post that I had been free from a flare for a year and I was taking no medicine. The replies I got were all about the science of waxing and waning symptoms and la da da. Left them the link to this site and wished them well. I was very sad. I was close to many of them and they wouldn't even consider trying diet.

I am hopeful that next year for the holidays I will be where you are. I need to recount my story again. Everyone seems to have forgotten just how sick I was. I just eat weird to them. Not because I was sick. In fact, as I was writing this, my hubby asked what I was writing and I told him. He had forgotten so many details of how sick I was. Extended family doesn't remember either. Unless I remind them. On my facebook page, I talked a little in the info page about my psoriasis. I need to make a note, a long one at that, about it, with pictures. That way people will understand why I try so hard to stick to this way of eating. Im sick of crumbling under peer pressure, even just glances that say "I wonder if she'll eat". Maybe if I was sick enough I wouldn't. And now the back pain thing is an issue, well has been for a while. But eating good and losing weight will definitely help that. Took a big detour. :roll:

Thanks for all you share here.
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Re: Psoriatic Arthritis Journal

Postby nicoles » Sun Dec 30, 2012 4:48 pm

Hi Moonwatcher! Very interesting to hear of Kelly's similar experience. Quite a breakthrough, yes! Thank you for visiting over here! And Happy New Year's to you as well :-D

Hi Debbie! Thank you for sharing your experiences with the antibiotics - it was very interesting read.

How unfortunate that you were called a troll on the psoriasis board. I was on a few boards like that too, but I got iced out after things really started to work for me, diet-wise. I still lurk now and then to see how my old friends are doing, but it is really hard to find anything to say that won't raise their defenses.

I mean, it can seem like everyone is talking about how they are such victims because they keep hitting their hands with a hammer (i.e., eating poorly) and complaining about how it hurts and it just does not feel right to say "oh you poor thing, life sucks!" you want to scream, "STOP HITTING YOUR HAND WITH THE DARN HAMMER ALREADY!!!" But if I do they have a mad at me. :cry:

I have not forgotten how sick you are at all, if that helps. My psoriasis was never painful but I always knew it could be. Whenever I encounter someone who says psoriasis is no big deal, I always think of you trying to nurse your newborn and crying because your hands hurt so much. But I know it is really easy for people to forget. Especially people who were not personally impacted by it at all. Definitely remind them if they are getting on your case about how you eat!

I have been following your Pain Elimination Journal. It was very interesting to see how you could crack your neck the other day. That seems to be a big indicator for me that something is clearing up, when I can crack a joint that was stiff for a long time. Those pain free exercises are good too. And a good chiropractor. I am looking forward to seeing you doing great this time next year!

xoxo

Nicole
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Re: Psoriatic Arthritis Journal

Postby eri » Tue Jan 01, 2013 6:51 pm

Happy new year! Hope 2013 brings you only the best! Thank you so much for all your support & encouragement over the past few months. I really appreciate it. *hugs*
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Re: Psoriatic Arthritis Journal

Postby nicoles » Tue Jan 01, 2013 6:56 pm

Hi-Di-Lee-Ho and Happy New Years!

Alas, I rung in the new years sick in bed with a fever - the two-to-three day bug my husband got which I thought I have avoided hit me hard during the night of Dec 30th-31st and I awoke with a climbing fever, which topped at 103 degrees and broke this afternoon.

No biggie, I been sick before. What is of note is something I always forget, but occurs to me that might be relevant to my AI stuff and that others might also experience this:

After every illness*, especially one where there is a fever, but not exclusively, I get a large patch of bright red hives all over my chest and abdomen. It is really like all the skin turns pink and raised in a swath.

*I categorize the odd times of feeling unwell that might be some form of detox under "illness"

Anyway, it is usually my clue that the illness is on it's way out, but it is odd. I wonder - does this happen to anyone else?
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Re: Psoriatic Arthritis Journal

Postby nicoles » Tue Jan 01, 2013 6:57 pm

Hi Eri! We crossed posts! :-D

Happy New Years to you, and may 2013 be the best yet for you!
{{{{HUGS}}}}
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Re: Psoriatic Arthritis Journal

Postby eri » Tue Jan 01, 2013 9:02 pm

Oh Nicole, so sorry you have been sick. Shouldn't we get a pass on run-of-the-mill illnesses?! LOL
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Re: Psoriatic Arthritis Journal

Postby moonwatcher » Tue Jan 01, 2013 9:29 pm

Hi nicoles,

Hoping you feel better really soon. Glad the fever is past. I can relate to your way of categorizing these "illnesses," that sounds very familiar to me, but alas, I have not had the hives reaction you have had. But then I don't have the psioratic arthritis, just other plain old auto-immune treasures. :) But it makes sense to me that your skin would react.

A very happy and healthy new year to you, my friend!!

xoxo

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Re: Psoriatic Arthritis Journal

Postby nicoles » Fri Jan 04, 2013 1:51 pm

:lol: Eri :lol: We totally should get a pass. Oh well. :lol:


Moonwatcher
Good point about my skin reacting, since I have psoriasis. Ah well, it is a known quantity for me, at least in terms of what it portends. (Hm, maybe "portends" is not the right word. Adds an unnecessary edge of danger and drama to it. Perhaps "predicts" is better.)(As long as it starts with a "P" :lol: )

Still recovering, but definitely getting better. Went for a walk today, and it tuckered me out! Ah, the twilight limbo of still being sick, but feeling better enough to be bored, yet unenthusiastic and lethargic. What Netflix Streaming is made for!
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