Psoriatic Arthritis Journal - 2.5 year Update Page 63

[nicoles]

Hi Leslie!

Is that strange that your rheumy was baffled by your condition back then? (I only know about PSA from the Enbrel ad.) What is the test for PSA?

It is a little strange, but really he was mostly baffled by the burning symptoms. Once I got the diagnosis, that is. Other doctors before the diagnosis were baffled about all of my symptoms and considered me a malingerer.

The PsA test is a genetic test for the gene HLA-B27, which is also present for psoriasis, Ankylosing Spondylitis, and Ulcerative Colitis. Aside from that, they look for pain and swelling in joints, bone fusion in the lower back - since Ankylosing Spondylitis is often present with PsA(I did not have that,) swollen, sausage-shaped fingers and toes (I did not have those,) horizontal ridges on the finger and toenails, which I did have, but very slightly, and psoriatic lesions, or psoriasis, which I also did have.

Sometimes the C-Reactive Protein and SED rate will be elevated but mine never were, even at my worst.

Now that you're feeling mostly nomal-ish, do you focus less on your health and more on other things? Or not yet? Seems like you/we will always have a lot of work to do testing foods.

Oh yes, absolutely,it has been wonderful to feel like a human with outside interests other than disease and diet again!

There is a baseline level of attending to my health that I don't sacrifice, though. Plus, food testing is ongoing. And food prep, planning, purchasing is a huge task still. Easier now that I feel better.

When I was really bad it was all I could do to research what I needed to do with diet, then do it. No spare time or energy for anything else. I was really boring! But it was so worth it, and even then I knew it's value.

I remember, the first time I was OK enough to go food shopping for myself for the week! I was so excited, I felt like a free and autonomous adult again. And now, I can do so much more, food shopping is a chore again!

One thing I don't really understand is that when I read people's stories, it seems like as well as eating on plan, nearly everyone who has a similar disease ALSO ends up having to do an elim. diet eventually. But maybe I'm not seeing this correctly because if this were true then Dr. McD would be more focused on that (like Neal Barnard is.)

I wonder about that, too. I think, from what I understand from Dr McD, Dr F and Dr B's work, that a large percentage of people with AI disease have it clear it up quickly with just a plant-based shift. Maybe not 50%, but a significant amount. The rest of us have to do more work, and I sometimes think that the ones who need to work the hardest come here and post here the most because we really need the support and have a lot of questions. So that we might be over-represented in the forum. And I also wonder if Dr McD does not want to scare people away, and so de-emphasizes the need that many have for more work to get well.

But I could be wrong.

[nicoles]

I take a probiotic daily, it has helped me a lot, and made me a believer in the whole Leaky-Gut-and-AI-Disease connection.

Anyway, Michelle had asked me bout it in her journal (anyone reading this who has not visited Michelle's Journal, take a look - she is dealing with Fibromyalgia and is a also a simply lovely person to get to know) and I thought I'd add my answer here, too. Maybe it will be helpful information for someone

Let's see...I think I started getting *sick* all the time about 3-4 months into this WOE, after a lovely honeymoon phase where I was steadily improving, initially.

The crises would last a couple of weeks at minimum to the last really bad one - where I feel like I got over a big hump of toxicity - lasted about two months, with varying degrees of severity, then turned into a slow but linear improvement trend.

It took me a long time to regain my energy after that one, as I recall. Lot's of naps.

When I first started probiotics I was taking the Allergen-free Jarrow-Dophilus, 2 capsules about a 1/2- hour before each real meal, so 6 a day. It was noticeably different, but not miraculously curative. I'd more notice that I felt worse if I forgot to have it than noticed feeling much better, if you know what I mean.

Then I found out about VSL#3, which is expensive, but has no fillers, unlike other capsule probiotics, and has 450 billion bacteria per packet, as opposed to 10 billion a capsule, so each sachet did not equal one day.

The thing about VSL#3 is that it helps grow the good guys in the gut, but also coats the lining of the intestinal walls if you take a good amount (around 50 billion or more) 1/2-hour before a meal, and therefore decreases permeability faster than your gut can heal on it's own. This is the one that really sped up the feeling good, but I felt a bit weird in my tummy for two weeks before I got used to it.

For that one, each sachet is about 7 teaspoons (or 1/2-teaspoons, I can't remember ) and so I'd take a teaspoon (or a half) before each meal - which is about 65 billion microorganisms. This means that each sachet really lasted about 2 days, so the $86 price tag was really $43 a month, comparable and even a little cheaper than what I'd end up spending on Jarrow-D at 6 caps a day.

Then I convinced my GP to prescribe me VSL#3 DS, which is only available by prescription but has 900 billion microorganisms per sachet. I managed to get the 'script because Psoriatic Arthritis and Ulcerative Colitis share a common genetic marker - HLA-B27, and this probiotic is appropriate for UC patients.

Yep, not being a McD poster child seems reserved for those of use with real illness, the kind that resulted from perhaps some changes to our DNA even.

I'll be praying right there with you for the best! {{{HUGS}}}

Edit: P.S. - VSL #3 can be purchased online, but that comes with a $20 S&H fee. I got mine at the local CVS - I called and asked if they had any (it has to be refrigerated) and they did not but ordered some so I could get it 2 days later.

[Lesliec1]

The PsA test is a genetic test for the gene HLA-B27, which is also present for psoriasis, Ankylosing Spondylitis, and Ulcerative Colitis.

Interesting! I also have UC though no flare ups for a long time.

I'm glad you posted about the probiotic. I think/know I have leaky gut. A few years ago my natural doctor said that prednisone strips the intestines of any good bacteria. Then he tested me and was more than right. (I had zero good bacteria.) I assume that's still the case (because after he treated me, years later, I went back on prednisone.) I feel like it may be a waste to bother with probiotics until I'm off this drug. Maybe I'll have to re-think that.

[nicoles]

Leslie, you have UC too? Glad you have not had flare-ups for awhile, my best friend has it pretty bad and it is really hard on her in so many ways.

Might be worth trying out the DSL#3 DS, or otherwise. I'd say it is worth it even if you are on meds. Maybe especially if. Another good thing for the gut is Quercetin, Glutamine and also Aloe Vera juice, with the inner fillet in the juice.

You know, better yet, here is a handy reference page about healing Leaky Gut, by Dr Klaper, one of the doctors at True North, the Fasting center in Santa Rosa that Dr McDougall recommends.

[Lesliec1]

Yes, UC is awful. Sorry for your friend. It also means you have to take huge doses of prednisone- that probably set me up for many more problems. I'm cautiously optimistic that my last attacks were due to either wine or NSAID's. That was 4 years ago and no problems since then - now that I'm careful not to ingest those items. So knock wood.

Thanks for that link on Leaky Gut. Printing that out now! Most doctors do NOT believe or know about leaky gut, true? I was just wondering if I could get the good probiotic prescribed by someone. I should try.

My neighbor had a teenage boy who slept crazy amounts of hours. She took him to 13 (!) docs to no avail. Many said basically "make the lazy kid get up" sort of thing. Luckily she had lots of time to search and search for answers. Turned out to be leaky gut and once he was on a "special diet" he got cured. This was a while ago so I don't know what diet. I wonder.

[nicoles]

Wow, that is crazy story about your friend's son! I am glad they looked hard to find a real cure/cause!

I know, Leslie, my GP does not believe in Leaky Gut at all. He does believe in probiotics, though, so when I asked for the 'script, he was fine with it. I have had digestive "issues" in the past, although nothing like full-blown UC, but it was enough to get him to write a prescription for the VSL#3 DS.

Yes, my bestie was on Prednisone for about 6 months, and it was awful. Her GI doc told her emphatically to take probiotics while on corticosteroids, and she did and does. In fact, she came to visit last spring and we each had our joint ritual of taking the probiotics in the morning and at night. It was kind of nice, in an odd way

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Yesterday I went to my first group Iyengar Yoga class since a bit more than a year ago. Before that, it was two years.

I have been doing yoga at home, myself for awhile, but have been unsure whether I could keep up in a group class. The summer before last, I took an 8-week introductory series there and had a bad experience. I *looked* like I was more advanced than I was, because I am rather flexible and have been doing yoga for more than 20 years, but at that time my strength was not there and I had inflammation issues still happening. So the teacher would always ask me to demonstrate, and I'd have to say "No, I am not up for it" in front of the whole class, and then she'd try to bully me into it, even though she knew I had psoriatic arthritis. It was stressful and upsetting to be in that position (I know, not very "Yoga" but Iyengar Yoga? They are very strict! I like the practice, though.) I allowed her to bully me once, hurt my hand and could not use it for two weeks. So, understandably, I think, I was apprehensive.

Anyway, yesterday I came equipped - I spoke to the teacher ahead of time and mentioned that I might look more able than I was and why. This teacher was a bit more graceful and experienced than the last one, so it all went well. Not only that, I better than kept up - I was just fine! I am very happy about that, and now I may begin the slow process of taking classes again, so that ultimately I may be able to teach once more.

Today, however, I am sore in my muscles and tired. Oh well, all worth it. I love to be "appropriately" sore!

[nicoles]

Day 2 after Yoga class, and I am TIRED! Really worked me out.

Not much DOMS, though, which is great. Not really any, actually. Just reeeeally tired.

[nicoles]

Been Feeling a bit under the weather for a while, so I took Katydid's advice in another thread and took a hot bath to induce a fever, then drank ginger tea and went to bed.

Purely anecdotal, but feeling much better today.

[Lesliec1]

That is so fantastic about the yoga class!! What a huge milestone. Really awesome to get back to something that you worked SO HARD to get back to. And yes, what a feeling to have that "good sore" again.

Hope you're not getting sick. Glad you're resting.

So glad you brought up the probiotic issue. Gald your friend has a doc smart enough to tell her to be on probiotics. So many docs I've had over the years and not a single word about it. (Wonder what else I should be doing that I don't know about!)

Anyway, I already bought some. Just a type from whole foods because I'm not home and I wanted to start right away. I'm definitely going to try to get an Rx for that "good stuff" when I see a doc. Thanks so much for that suggestion!

Feel better soon.

[fulenn]

So glad it worked out with the yoga class--and what a great thing that you were more than able to keep up!

I know what you mean about feeling like an adult again as you get your abilities, and thus your freedom, back. It's hard to be dependent on another person, no matter how little it may be.

Fulenn

[nicoles]

Hi Leslie and Fulenn! Yes, it was great to get to class, and so great to be able to do more and more.

Bummer Alert Once More - FIL is in the hospital again, as of an hour ago. Don't know what is wrong yet. Apprently he passed out in the shower. My first thought was that the BP meds he was on were working too well for the diet, but then was told they took him off BP meds a week ago. Oh well. I was hoping for an easy reason with an easy fix, but that twas not to be.

I am hoping that this is ultimately a good thing, that it reinforces his and MIL's commitment to a healthy lifestyle. They snap into denial so quickly.

[Lesliec1]

Oh that is a bummer about your FIL. But I really think something good will come of it, no? At least it seemed like they believe in this WOE even if they weren't able to be 100% at the time. Sometimes people need a couple wake up calls. I wonder if this means they will put him back on meds.

[nicoles]

Hey Leslie! I think you are right - good will come of it.

Good news FIL WAS on BP meds! (when my DH asked, FIL was understandably confused enough, because he also hit his head when he passed out, to say he was not.) And the BP meds were what caused dangerously low BP (40/60 or something crazy like that) that led to the fainting. So FIL and MIL and the whole family are all really impressed with how effective the diet is.

He is still in the hospital, waiting to see when he can come home, and both MIL and FIL have lost a little faith in modern medicine, because they WARNED their doctor about their dietary change and how they'd need lower doses, but the Dr. did not listen, and the Dr was wrong.

I do not think they ever entertained the notion that a doctor might know less than DH and I about certain aspects of health, and especially nutrition, but I think they might now.


So it is all a relief today. Phew! Back to attending to my life! Self-absorption, here I come

As far as me...

I have been basically replicating the yoga class I took last weekend at home all week, and I can feel and see my muscles getting stonger and bigger, and my flexibiility improving.

Very cool is that some of the residual aches and pains that I have long suspected to be structural, not inflammatory (even though one rheumy told me once that ANY pain I EVER had was DEFINITELY psoriatic arthritis . Look at me, being all contrary ) are rapidly dissipating after several days of good yoga. I guess the hard thing is figuring out what to do to address the locked up muscles. A puzzle I will enjoy solving.

There is a Yoga Therapeutics class at the Iyengar Institute of LA that I am considering taking, if the instructors deem it appropriate for me. One of the instructors is Marla Apt, who also taught the class this past Sunday, and I thought she was excellent.

Now I have a long-term dream goal of eventually taking the Iyengar Teacher Training at the IYILA, and becoming certified in Yoga Therapeutics.

Other than that this week has been all about painting, and thinking about things like the parts of a shadow, specular reflection, chroma, hue and other wonky painting things.

Also, just loving and being inspired by the paintings in this etsy shop.

As far as the food, I have been on plan. Was not super hungry this week, probably because I was in painting head and not bored or frustrated. I am feeling the need to get back to reintroducing news foods on my ongoing elimination diet. I stopped for awhile because things were so hectic and I did not want to risk eating something I reacted to and not being able to fulfill my responsibilities. So perhaps when this portrait is done I will get back to it. Exciting! Each new food is like a gift.

Hope Everyone has a great weekend!

[moonwatcher]

hi nicoles,

Great to hear about the yoga class, and being in painting head, too. When I started reading about your FIL's all that first thing I thought was BP meds, too. How interesting. I remember my Dad being like a yoyo with his going up and down and it not getting changed to the right dose fast enough. But he was not trying to eat this way, either, couldn't, so there's hope at your end!!

Sorry I have not been around much.I'm afraid that's likely to be chronic, as my blog went live on Friday! Here's the link:

http://fatfreevegan.com/slowmiracle/

Let me know what you think. The first post is brand new, the other ones will likely be a mix of new and reworked for that format. Hope you'll join me. I am still catching up with myself over this wonderful new development!

I am really happy for you for standing up to the new teacher, then finding out you have improved enough for it to be just fine. And to have the freedom to concentrate on that without having to demonstrate!

xo

moonwatcher

[nicoles]

Hey Moonwatcher! Thanks for the link to your first post! I read it right away - and all the comments - and it is so cool to see! I am trying to figure out how to comment on your blog, so we can stay in touch more regularly with less work for you

I also noticed that some people I know from Dr Fuhrman's forums are reading it, based on the comments. Your audience has grown by leaps and bounds! I am curious, and cannot remember right now - are you already published elsewhere, in books or journals?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Anyway, thanks for taking the time to say hello and catch up! Very interesting to hear that your father had a similar yoyo experience, even though he did not change his diet. Hopefully it will be easier for my FIL, we'll see.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Yesterday I had a lot to do, but I really wanted to go to the yoga class again, so I got up early and managed to get all the cooking and ironing done before 10, a.m., which is when I had to leave to get there. It went great! I kept up fine, am feeling even better physically than I was before, and I even managed to do shoulderstand, something I have avoided for 4 years because my right shoulder and wrist can act up. It seemed instead to actually help with the shoulder and wrist, not hurt it, which reinforces my notion that any pain I have ow is structural, unless it is unusual and happens after eating a new food.

Not only did I do all the housework and yoga in the morning, but I also took a 3 mile walk in the afternoon! Something good is happening here, my energy levels are way up, and I can do more and more without negative repercussions.